Brianne talks hypermobility, mast cell disorders, and recontextualizing old experiences using new frameworks.
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Transcript
I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Okay. Well, I’m really excited to finally be sharing a relatively recent interview. Today, No End In Sight’s brand new associate producer, Drew Maar is interviewing me about all of my health updates from this year. Plus lots of semi-related rambling and a bit about what to expect from upcoming podcast episodes. You’ll get to know more about Drew in episode 71, and you can expect to hear his voice more in future episodes as he takes on more production work.
In this episode we talk a lot about hypermobility, mast cell disorders, PTSD, and the ongoing work of recontextualization as you find new frameworks for interpreting old symptoms. We also talk a bit about my TEDx talk, my storytelling anthology, and the #NEISVoid hashtag on twitter so I’ll include links to all of those in the show notes.
We’re also refining how we do content notes for the show so you might see a few iterations of that before we settle on a style. If you have any feedback about what’s most helpful, we’d love to hear it!
Today for content notes, you can expect conversations about alcohol at about 22 minutes, in 26 to 32 minutes, and 49 minutes. I start talking about a bike accident around 28 minutes, then that gets a bit gruesome in terms of wound description around the 30-minute mark. And shortly after that there was a description of violence and secondary trauma that continues to the 35-minute mark. Then from about 35 to 40 minutes, there was significant discussion about parent loss. We also talked briefly about restricted diets at 53 minutes in, and then about COVID and lockdown at about the 60 minute mark.
Before we start, here’s my disclaimer: This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
[guitar riff]
Brianne: [00:02:02] Okay, great. Do you want to ask me about my health, and then whatever questions you have?
Drew: [00:02:09] So how was your health as a kid?
Brianne: [00:02:12] Great question, Drew. Thank you. I have thought about this a lot, and I think I talked about it a lot in episode one, but not in episode 50, but I was not a very healthy kid, but I didn’t really register that at the time. And I think there’s a lot of reasons why. So, first of all, I was exhausted all the time in elementary school. My mom used to dress me in bed, which is not normal. I don’t think for a prepubescent kid to not have that much energy. And I also was probably in a lot of pain. So when I was in third grade, my teacher called home to say, “Brianne keeps saying that she has a stomach ache or a headache, almost every day. What’s up with that? Is something going on?” And this is how the split happens. So both my parents were psychologists, which is not typical, probably for a lot of people. And they split up when I was pretty young when I was two or three years old. And then my stepmom was a social worker, and then my stepdad was in sales. So he’s on his own trajectory, but three of my four parents were mental health professionals, which is not normal.
Drew: [00:03:20] Yeah.
Brianne: [00:03:20] So when I was in third grade and I was having a really hard time, I was also miserable. I came home crying from school almost every day. It was just… a lot of things weren’t going well, and also I think I was pretty uncomfortable. And at that time is when they do standardized testing in Ontario, which is where I grew up in Canada.
Drew: [00:03:38] Right.
Brianne: [00:03:38] And according to Canadian achievement test results… that’s what it’s called the CAT test. They would use that as a screening tool for special education. Okay. Including gifted. And so I think it’s kind of a bell curve situation, even though obviously there’s a lot of bias that goes into testing and the construction of that bell curve. But they’re like, “Okay, kids who performed in a certain percentile on this standardized test get pulled out for more follow-up testing,” Including a lot of tests that I now know are used to test for other types of neurodivergence, like Raven’s Matrices and other stuff that eight year olds can do to test… I don’t know what they call it, but it’s probably like, “Innate intelligence,” which I put in air quotes because it’s a horribly flawed concept, but it’s checking for how your brain works, basically.
Drew: [00:04:23] Yeah.
Brianne: [00:04:24] So that was optional, but… gifted education… I know you know this, but gifted education is a type of special ed, but it’s not usually identified or talked about that way, probably to make it sound less stigmatized. And for a whole bunch of other reasons that maybe we talk about, maybe we don’t. But anyway, so I went into gifted in fourth grade and this impacted, I think, a lot of things. It was a full-time program. It was one of four in my city. So…
Drew: [00:04:51] Okay.
Brianne: [00:04:52] It was like a normal… I don’t know why I’m using the word normal so much, but it was like 30 kids in a classroom. It felt like any other education, but all of the kids in this classroom were kids who had been flagged by standardized testing as being… at the time they would call it, “deemed gifted.” So you had an asterisk next to your name, but the reality is that probably most of those kids were neurodivergent and getting put into this new environment that has been specifically designed for kids whose brains quote, “work a different way,” but like, “in a good way,” again, quote, I think creates an interesting environment and for me, and I know a lot of other people feel this way.. I was a lot happier in school from fourth grade on, but I didn’t think critically about that very much. So that is one thing that I think played into it. And then there’s a couple other layers that I’m going to put into it that I didn’t talk about, I realize, in my last couple of episodes. So layer one is that I said both my parents were psychologists. And the reason that my dad is a psychologist or was a psychologist, is that he grew up… he was dyslexic, and he had ADHD and neither of those were diagnosed until he was in at least his twenties. So he went through high school… I think he started college and then dropped out and then my grandfather who I never met, it was his greatest regret that he hadn’t gone to college. And so as he was literally dying, and my dad was a college dropout, he was like, “No, son, I’ll be so proud of you. I want you to be happy, get your education,” kind of. Maybe I’m misrepresenting that. But…
Drew: [00:06:30] Woof.
Brianne: [00:06:30] Yeah, right? And so that’s the picture that I got from my dad, I don’t know how true it is. And ultimately he did, and I think the diagnoses made a big difference. So basically my dad in the 70s and 80s, we’re talking about, so… this is really important, actually. My dad who had gone to boarding school for high school.
Drew: [00:06:48] Okay.
Brianne: [00:06:49] So he was… his grandfather had been pretty affluent, if that makes sense. So my dad came from a pretty affluent family. He was living with undiagnosed disability, but one of the realities of having a lot of privilege is that you also sometimes get a lot of invisible accommodations.
Drew: [00:07:06] Right.
Brianne: [00:07:06] And so I know, going all the way back, that that was happening with my dad. He failed high school French, and they were just like, “Please, we will give you a passing grade if you just, don’t take another French class ever,” kind of a lot of stuff like that.
Drew: [00:07:19] Yeah.
Brianne: [00:07:20] And so at this point, he’s made it, he’s dropped out of college. He decides to go back. He gets diagnosed, I think somewhere in his twenties, and he’s able to get some accommodations to get back to college. And in the 80s I don’t know exactly what that looked like, but I know that he… when I was a kid, he was using early versions of text to speak software.
Drew: [00:07:41] Oh, cool.
Brianne: [00:07:41] So he had early versions of Dragon, which were not very good at that time. And he was just like, “This is the worst thing in the world, but…” So this is another thing that was kind of going on around me that was normal to me, that I had never really thought about.
Drew: [00:07:55] Yeah.
Brianne: [00:07:57] So as I’m going into the gifted program and trying to make sense of… at eight years old, of getting this designation and what it means and getting put another class, I have my dad who had a really different education experience, but now has a PhD, being like, “This is just one part of it. Everyone’s smart in different ways,” trying to really aggressively push back on this narrative that’s like, “You’re special because you’re smart.” And… because he had been diagnosed with ADHD at that time, and he actually was a specialist who worked exclusively with kids with learning disabilities. So that was his entire practice when I was a kid.
Drew: [00:08:33] Okay.
Brianne: [00:08:33] And so another thing that that means is that I was… my parents had split custody, so I lived with my mom, and I spent every other weekend with my dad, and then he would come take me out on Wednesdays, which was a lot to see a non-custodial parent, but also, it meant that every other weekend at my dad’s was very casual conversation about ADHD all the time. The entire culture had ADHD coping mechanisms that were intentionally built-in, like lots of list-making, lots of schedule-making, all of this stuff. And they called it the A-thing, and it would be like, whenever in a conversation, someone said a non-sequitur, it would be like, “Oh, that’s an A-thing… what was the thread? Where did that come from?” So, meanwhile, I’m being put into a gifted program that I don’t know to label as special education, and also I’m being given all of these coping mechanisms for what’s being called… what my dad would call ADHD, but I was never evaluated for. And basically what I can see now from adulthood is that I got a lot, a lot, a lot of coping mechanisms. And invisible accommodations just built into my entire environment that I couldn’t see from a very young age.
Drew: [00:09:42] Yeah.
Brianne: [00:09:43] So, okay. Those are two of the three things, and then the other thing that started happening around that age, is that my mom was navigating a lot of her own mental health stuff. And so right around the time… around the age… between eight and eleven is when I think back to it. I don’t want to armchair diagnose or make meaning of the situation that wasn’t there, but the way that I would explain it now is that she was probably processing a lot of trauma that had isolated her from her family, and so 1.) I was hearing about a lot more of it than maybe an eight to eleven year old needs to hear, and 2.) one of the reasons that that matters is that there was a lot of… I don’t know how to characterize this… fluid relationship to reality, I will say.
Drew: [00:10:28] Sure.
Brianne: [00:10:28] And when you’re a kid and someone… your main person in your life has a fluid relationship to reality, you don’t necessarily have the tools to interpret that critically.
Drew: [00:10:38] This is sounding very familiar to my life experience.
Brianne: [00:10:42] Yes, I suspected that it would, for a variety of reasons. So that also started around that time, and it was… I think kind of peaked while I was in middle school, during the years that I was in middle school, but… Okay, so that’s a bunch of stage-setting that I didn’t have context to even think would be relevant for all of this story the first time that I talked through it, so that’s some background about my health as a kid, which is that, I was probably… I mean, I was almost certainly neurodivergent, but I was in special ed. I was having a lot of body stuff, but all of a sudden, I switched to a much better environment. And so my body stuff just didn’t seem that critical or it wasn’t as disruptive. And I was in an environment where mental health was tricky.
Drew: [00:11:29] Yeah.
Brianne: [00:11:30] Okay. So then moving forward, I already talked about a lot of the anecdotal health memories that I have in episode one, which is like, I had really bad neck pain when I was a kid, and I lived in Canada so healthcare was socialized medicine. So it wasn’t a big deal to go and look into stuff. So I got x-rays, they came back negative. I had a lot of phlegm when I was a kid, a lot of mucus. That was pretty gross. I got some kind of a GI tract investigation. Again, came back pretty normal, “We’re not worried.” When I was 11, this is actually the same week that I got my period is the first time that I, on a family hiking trip, kept lying down on the side of the trail and being completely unable to get up. And everybody in the environment thought that it was a mental health thing. So everybody is reading it as like, “What’s going on with Brianne? Why won’t she fight through it? Why won’t she just get up? We get it, you didn’t want to come on this hiking trip or whatever, but stop throwing this temper tantrum, you’re going to die in this crater or whatever. It’s going to be cold overnight.” And I have no idea what I was thinking at the time. I had no words for describing it. I didn’t have words for describing it for literal decades. And now I’m like, “That was orthostatic intolerance.”
Drew: [00:12:44] Yeah.
Brianne: [00:12:45] That was almost certainly POTS. That’s exactly what that feels like, so… and similarly there was another story that I talked about in episode one in 2015, to just aggressively jump the gun for a second, where I was like, “Yeah, I was out with my friends and it was late and I had just changed a bunch of things about my life. And then I blacked out on the corner,” and I’ve blacked out a lot as a person before, but never like that. And I’m like, “That was POTS. That’s what that was.” Okay. So that’s a lot of the stuff…
Drew: [00:13:15] Yeah. Like, “I need to be horizontal right now.”
Brianne: [00:13:19] Yeah. Yeah. I’m just going to curl up, and we’re both horizontal right now as we’re talking, so that’s relevant.
Drew: [00:13:25] Yeah.
Brianne: [00:13:26] Okay. So yeah, and another fun fact about me when I was a kid is that I could put each of my feet behind my head, and knew that human-pretzel style. And in fact still can, although I didn’t do it the whole time. I just discovered that recently, and I also could do all of the splits. So I was a pretty flexible kid and thought of myself as a flexible kid and thought of myself as a kid who bruised easily and thought of myself as a kid who got sick easily. But none of those really… I think that was because I was benchmarking against the people around me, but… still those were within the normal standard deviation. Okay. So then I think the next major thing was that when I was 16, I got mono. So I was working at a summer camp, which are disgusting just everything about summer camps are disgusting.
Drew: [00:14:15] Yeah.
Brianne: [00:14:16] And I think one of my coworkers had mono, so probably everyone got it, frankly, but different people’s immune systems responded differently. So I was working at the summer camp. I knew that I wasn’t doing well. I was getting more and more fatigued, beyond what I would already expect for me. So it had already been a problem when I was 16 that I had more trouble than other people activating or getting into things, but I think it’s because of something underlying in my brain, for sure. I’m labeling it maybe as depression, I’m honestly not sure. And so I got mono, I went to the walk-in clinic. They were like, “Oh, it’s probably strep throat, take these antibiotics and go back to work.” So I took a round of antibiotics and went back to work. And then I was just getting worse and worse, and the last week of summer, I had a fever the whole week. It was my week off, and it was awful. And then finally, I go to my doctor. I was like, “Well, they gave me some antibiotics. So maybe it’s that.” And she’s like, “Sure, here’s more antibiotics.” But she also actually tested me for strep and was like, “By the way, that was negative. Come back, please.” So she was like… I assume they did blood work for mono, but she was like, “You have mono. Your mono is very bad.” I was… my lymph nodes were so swollen that it was like a straight wall down from my jaw line. Basically I was extremely inflamed. I want to say your spleen is at risk during mono.
Drew: [00:15:37] Yeah.
Brianne: [00:15:37] And that was also very tender to the touch and kind of noticeably inflamed as well. So she was like, “I need you to stay home for five weeks straight because of how sick you are, and then we’ll talk.” And then this is another story about how being in gifted education was invisibly accommodating, which is that I missed… one of those weeks was a holiday. It was the fall break. So I missed four straight weeks of school. And my high school was self-paced. It was a completely experimental high school. It was a public school, free to attend. It was the only high school that offered gifted education. So it had four gifted… four middle schools with gifted program streaming into it. Plus it had all of the other alternative ed models that the city was messing with were at my high school. Or maybe there were two high schools. It doesn’t matter. It was self-paced is the takeaway that I was trying to say. So I’m really sick. I’m missing all of this school, and nobody’s talking about holding me back, nobody’s talking about truancy, nobody’s talking about any of that stuff. Honestly, the only thing that happened is that my guidance counselor, who was also incidentally, a friend of my mother’s was like, “Hey, do you want to study for the SATs during this break that you have?” Because we don’t have any, college level standardized testing in Canada.
Drew: [00:16:51] Right.
Brianne: [00:16:52] She was like, “It might just keep your brain busy.” So I was like, “Uh, sure.” So she gave me an SAT study guide, and I literally took the SATs because of that.
Drew: [00:17:01] funny.
Brianne: [00:17:02] Yeah, just a weird thing that actually kind of majorly impacted my life, and this is in… so based on how old I am, this is in 2003, I want to say, And so the internet didn’t… well, the streaming internet didn’t exist, so the internet existed, but there was no streaming television. So I was watching Murder, She Wrote in syndication all day. And then maybe I think I got my parents to get The Sopranos on VHS from Blockbuster, like season by season so that I could watch them in order, which is very difficult to do without streaming television. So it was… I know that there are many people who have been sick constantly since then, but it was very different to be sick at home pre-internet.
Drew: [00:17:45] Yeah.
Brianne: [00:17:47] Okay. So then I basically started going back to school, and I just kept missing first period. So I found that if my sleep was disrupted, my lymph nodes would always hurt. And I knew that’s what it was because they’d been so inflamed. So I didn’t fully recover, but I recovered enough that I could participate in everything again. And because I had pretty much always been dragging dysautonomia behind me and all of this shit behind me, I didn’t… I wasn’t like, “Oh, this mono was a turning point.” It was just like, “Cool. Here’s another thing that doesn’t work the way that it’s supposed to now.” So…
Drew: [00:18:21] Yeah, disease sort of slowly gets normalized.
Brianne: [00:18:26] Yeah. Yeah. And I was still like… I think one day I… my first period class was calculus, and my calculus teacher was like, “You’re falling behind and nobody ever catches up on this class. And like, if you don’t get your act together, blah, blah, blah.” And I… that was the extent of someone being not very nice to me about my health at school, which is not very much. And I think I went to the resource room crying just from that conversation. Cause I was like, “I’m trying so hard.” You know, like, “I’m so sick.”
Drew: [00:18:54] Yeah, because even though it’s not like that bad on the scale of possible things that could happen that still sucks to have a teacher talk to you that way, it really hurts. And especially. I don’t know, in my experience being labeled as gifted means that a lot of your self esteem gets wrapped up in, not just your grades, but also how your teachers treat you. So to have a teacher suddenly not like you after years of maybe having so many teachers be like, “Oh. You know, Brianne is a joy to have in the classroom.” It’s a really big hit to your self esteem.
Brianne: [00:19:40] Yeah. And it’s like… and there’s all kinds of weird stuff that I know would get caught up in the way that people were… probably everybody in this class has ADHD. So we could schedule our own tests. Self-pacing is really wild, but everybody is already going through this system in really unusual ways. And I think probably she had some experiential ideas about when students needed a motivational talk because they hadn’t been continuing to activate, but that wasn’t what was happening at all. And I test well, which is also, I think, related to all of this stuff. It’s not a usable skill, but I’ve always done well on tests. So there’s never been a cause for concern if you are a teacher who is evaluated on those things. Anyway. So, that was high school, so pretty good. And also relevant maybe I’ve never been very athletic, but I played water polo in high school. So… not a flexibility sport, kind of a context for… blah, blah, blah. Not super relevant yet, possibly later.
So I ended up going to school in the States, specifically because I took the SATs. I would never have looked, but I have dual citizenship. And when I was looking, my grandpa who was in his 90s and who was from Iowa… he was like, “I think you should consider the college that I went to.” And he… my grandpa’s college stories are hilarious because he was… grew up on a farm in Iowa. I want to say that his mom was a German immigrant and maybe… I don’t know. I think his dad was just a longer ridiculous settler story, but my grandpa ends up going to college during the depression and he’s like, “I couldn’t pay tuition. So I rode the train to get there and dated the dean’s daughter so that I could pay tuition late.” I was just like, “What? What are you talking about? This is an absurd story in every way.” Anyway, I went there for some reason. I was like, “Well, I took the SATs. I might as well apply to American schools. And if I don’t get into any, then no big deal.” But I got in, I ended up going.
Drew: [00:21:50] To U of Iowa.
Brianne: [00:21:51] No. So I went to Grinnell college, which is in the middle of Iowa.
Drew: [00:21:55] Oh, okay. Yeah. One of my friends from high school goes there. I asked about U of Iowa, cause that was one of the three schools that I applied to.
Brianne: [00:22:04] There you go. Yeah. In the middle. And I feel like Iowa… is it U of Iowa that has a really good literature grad program.
Drew: [00:22:13] Yeah.
Brianne: [00:22:13] This doesn’t matter.
Drew: [00:22:15] Yeah. It is.
Brianne: [00:22:15] Okay. I know Iowa is known for its writing programs.
Drew: [00:22:19] Yeah that’s why I applied.
Brianne: [00:22:19] So, I went to Grinnell. Yeah. And a lot of people that you know have gone there. I feel like a lot of writers that I like, so I always hear about it in that way. Yeah. But Iowa, so I went to college and my first year of college was… this should have been a sign, but also… I was 17 when I started school just cause when my birthday is and conflicting systems and stuff. I was 17 when I got to college, and I could tell my first… so first of all, my first year I drank a lot. I’d been drinking… I drank socially in high school, but not very often, and drank socially more in college. And first year, something that I started to notice but had no language for was that 1.) I had a lot of… what I would now describe as… I had an anxious attachment style, so I would get really worked up over communication stuff in a way that was unfamiliar. But also what I was more aware of was that this first year of college was… and I was living in the dorms was the first time that I had never felt like I was living in the middle of an active crisis. So at home that felt like an active crisis all the time. Partly because it felt like my mom was navigating an active crisis. Plus, now… probably because most of my friends were all undiagnosed neurodivergent or most of them were… a lot of them also had kind of complicated trauma things going on, and I’m not saying that to say that neurodivergence causes trauma, but I think we know anecdotally that there’s a pretty high crossover of navigating the world with an undiagnosed lens that you can’t see. So. Basically everything felt like active crisis all the time in high school, because everyone I knew was, my own home life was, and I didn’t have good language for that either because I grew up in the suburbs. So I grew up in a pretty… well, calling it financially stable would maybe be misleading, but I grew up in a relatively financially stable environment in the suburbs. And my closest friend growing up had a very financially insecure… they moved a lot. So I was really, really hyper aware of all of the privilege that I did have. But I did not have enough context to see that that doesn’t mean that trauma can’t happen. They can coexist.
Drew: [00:24:41] Yes.
Brianne: [00:24:42] So I got into college and I was just melting down a little bit because my nervous system was not stimulated in the way that it was used to being stimulated by crisis. And so I was aware of reacting disproportionately to things sometimes, or… I could kind of see those happening, but I also was like, “Okay, interesting.” And also I’m 17/18, and I’m in college. I’m… whatever doing college things. So that was, I think, a chapter that I did not talk about as much on the podcast, because it has been really… those depths have been plumbed a lot in other projects that I’ve done. That’s when mental health and trauma stuff started to kind of take shape for me, but things didn’t slow down enough to process for like, five more years. So my second year of college, my mom was diagnosed with cancer, and it was a skin cancer. They thought it was pretty treatable. They were pretty optimistic, but still not great.
Drew: [00:25:47] Yeah, Yeah. No, that’s hard.
Brianne: [00:25:50] Yeah, so I was like… I think kind of immediately went a little bit more into… I don’t even know what to call it now, but coping poorly, I guess. So the Thanksgiving of my sophomore year, I went home just so that… to do my week of driving my mom to chemo cause my sister had already done it kind of… that’s what was happening in the non-school side of things. And what I think now is… I think I survived the course load of college because I had gone to a self-paced high school that relied entirely on my own other coping mechanisms that I had learned because I was incidentally raised in a household that was very focused on ADHD coping. So that was happening. And then… so my mom was in treatment and I was drinking a ton, and everyone around me was drinking a ton. So that was not a big deal. However, most people weren’t drinking to blackout like three nights a week, as far as I was aware. And it was sitting as the kind of thing where I was like, “That is maybe concerning, but it’s not the most concerning. It’s not what I’m the most concerned about.” And the fallout, which was always contextually okay. One of my friends was like, “You know, sometimes you wake up, and you don’t remember what happened. And it’s like a shame hangover.” I was like, “I know exactly what that is. And also everyone around me is in that same space.” And everyone around me is in a perceived-safe campus environment where we’re all like, “That’s okay, this isn’t the real world.” You know, like, “We’ll learn to be safe later.”
And then… God. Okay. I have to think through this timeline. So, and then, my mom went into remission, which was great. But during the same time my dad had had a head injury, and he was rapidly deteriorating in an unexplained way. And so about six months after my mom went into remission, my dad was diagnosed with Alzheimer’s, and my parents were divorced. So this is two separate units. So my dad was diagnosed with Alzheimer’s when I was 19. And that did not help in the scheme of being a functional person who knows how to cope with things. So I was like… sophomore year. Yeah, still drinking a lot. And then I started dating this guy who definitely also had a substance abuse problem and other stuff going on. And so the impact of that, which I will mention casually is that then my junior year… oh God, no, this is… okay. A bunch of things that I didn’t even think to talk about on the podcast, barely, but now play into this whole story are about to happen at once. My junior year of college, I was dating this guy who was… who had gone through a lot and was not handling it well is what I’ll say, and I… and a bunch of my friends were abroad and I fell off my bike. And this is my second bike accident that sent me to the hospital actually, so I fell off my bike and got a concussion when I was in high school. And I forgot a couple of days for a while. And this time I fell off my bike, and I think the pedal tore open my foot. Cause I was biking literally across the street, from one campus building to another campus building. Cause I immediately had to go… I was going from class, to eat, to work and I… there was just no time. So I was on my bike. And I went off of the sidewalk, and I tried to get back on and I tipped, I was barely moving and the pedal tore open the side of my foot, right below my ankle. And it was gross. and this is… maybe this has been talked about before, because actually Clare from… who was in a really early episode of the podcast, who went to college with me, was the first person that I saw. I was like, “I just fell off my bike. I haven’t looked at it yet. I have this problem where I faint.” Because I just… I had… okay.
Drew: [00:29:46] Right!
Brianne: [00:29:47] So I skipped over that part too. So the whole thing where I like went to the ER, because I fainted at a back health lunch and learn, which I talk about in episode 50, had happened like three months previously. So I have literally just been told that the thing where I have triggered fainting is called vasovagal syncope. So I’m like, “I have an injury. I think it’s gross. I can’t look at it because as soon as I look at it, my nervous system is going to freak out.” And Clare is like, “Don’t worry. I want to be a doctor. I’ll look.” So I lie down on the porch of the student center and pull up my pant leg. And Clare is like, “Yeah, you need someone to take care of this.” So someone from security, I think drives me to the only hospital in town, and I get stitches. And basically, I had stitches for three weeks or something. And they told me to get them out after that long. But what happened is, it was like… this is going to be gross. Are you ready for something slightly gross?
Drew: [00:30:45] Yeah.
Brianne: [00:30:46] You’re like, “Yeah. No problem.” So it was a Y-shaped cut.
Drew: [00:30:49] I’m braced.
Brianne: [00:30:49] And it had been stitched together in a Y-shaped manner. And the middle of the triangle of the Y had completely died. So it was just a triangle of black flesh stitched to this other. Slightly dying flesh. So basically I had to have wound debridement surgery, which I’d never heard before, but it means like cleaning. They had to clean the wound because the first stitches had not worked, and nobody had any questions about that, I guess. They were like, “Yeah, I guess this happens sometimes. No thoughts.” So I had surgery… this is the only surgery I’ve ever had, actually. I went under, they cut away a bunch of tissue, restitched it. Blah, blah, blah. So that is relevant actually because now I know that poor wound healing is something that people should pay attention to, but at the time I was just like, “Well, this sucks. I have the worst luck. Why do I have such bad luck? What a mystery.” And so that Halloween… actually, no, this was the November. Extra details that nobody needs. My college had a party in November, like an annual all-campus party called Fetish, which was what you think. It was just Halloween II: Grosser Halloween, the way that people interpreted it. So I… and the weekend of… maybe I was using a wheelchair for Halloween, I was using a wheelchair for one of these parties. And then maybe this one… I think this is the first one where I was walking again after the surgery. So I was like, “I’m dressed up. I am participating in the party.” And unfortunately this guy that I had been dating, who had a lot of shit going on… we’d just broken up, and he was not handling it well, and he had had too much to drink. And so I walked into the party and yeah, he immediately, after I walked into the room, he attacked somebody that he didn’t know, just spontaneously attacked somebody basically. And he… this is story is ludicrous. And he had been wearing a belt around his neck as part of his costume because his costume was autoerotic asphyxiation. And so he took the belt off, and that’s how he went after this guy. And so I walked into the room, this happened. I’d been drinking. He’d been drinking significantly more. We weren’t together either romantically or socially in this moment. I don’t know how that kind of timing worked out. But…
Drew: [00:33:13] Yeah. You were just both separately drunk?
Brianne: [00:33:16] Yeah. Both separately drunk and… maybe I was the catalyst or maybe it was a complete coincidence. I literally have no idea, but I see this happen. I am somebody who, even if it didn’t have anything to do with me, immediately runs the other way from fights because I’m afraid I’m going to pass out. And so it was deescalated very quickly, but I went outside. I panicked, threw my wallet in the trash and then went and sat somewhere until I saw somebody that I knew… completely, completely a mess. and so that more or less ended up resolving, the longer version of the story is that he ended up leaving campus, but I… Okay. So my foot recovers, I’m living my life again, but when he came back to campus, I started having nightmares. So, and they were really like, “Okay, subconscious, I get it.” So, the first one… and I don’t remember my dreams very often, so that’s also significant. I’m not having weird dreams all the time. I never have dreams. And so I had dreams, and they were just all him perpetuating violence. So I was like, “You know what? I should take some action about this. This isn’t a healthy thing going on.” And this was my senior year of college, so at this point I was like, “I recognize that perhaps I have not been coping with some of the difficulties in my life in healthy ways, and I would like to take action.” So I go to the student mental health center and I’m like, “Hey, I’ve been having nightmares about my ex-boyfriend because I saw him attack somebody. And I thought, maybe you could help me with that.” And she was like, “Yeah, that does sound tough.” And it was just like… everything that I said, she just affirmed. And I was like, “Okay. I can tell that your treatment is in affirming people, but I’m not confident that that’s what I need right now.” And in retrospect, I’m like “Also, if somebody comes to you telling you that they witnessed a traumatic event and started having nightmares, then maybe you should talk to them about PTSD”
Drew: [00:35:14] Yeah.
Brianne: [00:35:16] Perhaps.
Drew: [00:35:18] Seems like something to bring up.
Brianne: [00:35:20] Yeah. So… but I didn’t know that at the time. So that, and then what’s happening with my body, and then my body is otherwise the same, so I can’t stay up all night or I’m in pain. All of the stuff that I think I’ve talked about it in other episodes, but pretty static. And then I went straight to grad school because basically… the way that I would describe it now is that basically I was in constant fight or flight mode all the time. And I was like, “How am I going to make decisions about my life? My dad is dying right now. I am not going to go home and go back to the restaurant job that I worked last summer. Not because restaurant jobs are bad, but because I will lose it on somebody. I am not in a place where I can go back and work full-time in the service industry without something really terrible happening, probably. So I’m going to just delay my return to the real world for a couple more years.” And so I applied to grad school, and I didn’t know what I wanted to do with my life at all. And I was like, “Well, when I was younger, I wanted to be an architect. I should do that.” So I applied to architecture school, and I got into Michigan, which was one of the… which is a good program. So I went, and I took out a bunch of loans because I was like, “This is what everybody does. Let’s get into tons of debt to get a graduate degree because of course the graduate degree will put me into a profession where I will earn money to pay back the debt.” The classic promise of education. And so while I was in grad school, my dad died, which was hard of course, and it also… the program itself was really intensive. So I now know that architecture is a really hazing kind of field like, needlessly. It has a lot of professors telling you, “You should never sleep again, if you really care about it.” And if you go into the profession, the intern years are very similar, and I don’t think that it’s appropriate or understandable in medicine, but in medicine, you’re like, “Well, maybe doctors need to perform in these extreme conditions in an emergency.” Which I do not mean to say flippantly because we’re living through that emergency now. And I don’t think training prepared anyone, and it’s showing us that it’s just hazing. And then in architecture, that excuse doesn’t exist because there’s no reason for do that
Drew: [00:37:43] The stakes are not that high.
Brianne: [00:37:45] No.
Drew: [00:37:46] Yeah. My mom dropped out of architecture school for that same reason.
Brianne: [00:37:50] Yeah. I had no idea. It’s bananas. It’s very intense. So I was in architecture school, and I was not staying up all the time, the way that everyone else was. And I had a pretty bad episode of… a couple of weeks of vertigo, and also my dad died in the middle. So I was just not coping very well, but again, I think that the reason that I was able to finish is that I had… that was the one thing that I… courses in school were the thing that I had learned how to completely tune out for and do, but it was taking its toll. The summer after the first year, I think, I was really basically bed-bound for two months, but I thought that I was just a depressed person who hated myself. I was just like, “Oh, what are you doing? You can just get out of bed and choose to cook, and that’s not what you’re doing.” And of course I was grieving. So then my mental health really was not great. And then… it was the same. I think I worked my third year of grad school, my thesis year, I was in school, and then I was working in a restaurant, like three shifts a week, but I think I was working Saturday night. So it was Killing myself. I was in a lot of pain all the time. I would not have called it pain because I’d been in pain forever and just was like, “Oh, it’s hard to have a body.” And after I finished, I moved to Toronto with my college boyfriend. So we’d been together since I think my junior year of college. And we lived in Ann Arbor together, and then we moved to Toronto together and it was like, once we got to Toronto, I had enough savings from the restaurant that I was not feeling panicked for at least a couple of months. So I was like, “Okay, I’ll look for a job and I’ll rest.” And it was like, same story again, just for a couple months, getting off the couch was basically impossible. And then slowly I would get back to a place where I was able to go for walks or go for runs or go to Starbucks.
And I don’t know how I was explaining that to myself. Honestly, I have no… I don’t… I think I was calling it all mental health. And one of the things about my mom’s mental health was that for a long time she would explain this kind of stuff and say that I had been possessed. She was like, “It’s not Brianne’s fault. Brianne’s possessed. She doesn’t mean it. We just have to…” it’s not really associated with theology, so I can’t explain it that way, but that’s in there. Like, “There’s some negative energy and if we can just get the negative energy out, then you’ll be able to go back and do your thing.” And so that was a really foundational concept. And also when I was little, cause I was in so much pain, I had been to see a chiropractor. I had seen multiple chiropractors, many times I had seen kind of miscellaneous other bodywork people. I had seen all of the stuff, all of the weird stuff, I had been doing. And so a lot of kind of woo-woo… I don’t even know to call it… was in this space and a lot of toxic positivity, basically. So I’m in Toronto, finally, I’m like 25. I got a job that started part-time and then it was at a coworking space. So I was working from home a little bit, and I was working in a coworking space a little bit, and I hadn’t even looked for architecture jobs because I was like, “I couldn’t hack the hours.” Me, a regular healthy person, who just can’t hack the hours and has to accept that about herself as a character flaw, question mark. It all makes sense so far, right?
Drew: [00:41:24] I, a twenty-something, in the prime of my life, just can’t work this job.
Brianne: [00:41:30] Yeah. Yeah. So I was… you know, I’m 25. I’ve already determined not to pursue architecture because I know that the hours won’t work for me, and that’s because I’m spoiled I guess, and just don’t want to give up my leisure time. So anyway, I start this job, and the situation of it ended up being really great for me for all of those reasons. And I talked about this a lot, I think in episode one, too. So because I was in a coworking space, I worked there for five years, and I could lie down all the time. I worked lying down at least 50% of the time, and it was no big deal. And this, I think about a lot, as it relates to gifted education, which is that coworking spaces are a really specific kind of space, targeting really specific kinds of people and companies and workers. And a lot of them are trying to mirror the environments of tech companies. So at the time that I started that job, one of my friends had just started working for Google. And so, I’ve been on the Google campus in San Francisco… not in San Francisco, but in Mountain View and been around there. I know what they’re up to and you can see it. You’re like, “Oh, you have snacks everywhere. You have healthy snacks and fun snacks. You have activities. You have massage.” You can tell what they’re doing, which is like, “You’re making your workers as comfortable as possible so that they never leave.” And coworking spaces aren’t quite the same, but they’re employing a lot of the same things to basically blur work-life boundaries. But the other impact of that is that they’re accommodating a lot of people without calling it that. So it was like, “Oh cool. I can…” for me, it was that I can lie down all the time. I think for a lot of people at Google, it’s like, “I don’t have to prepare my own food.” If I didn’t have to prepare my own food, my life would be a lot easier and I could work more.
Drew: [00:43:17] Yeah. For sure.
Brianne: [00:43:19] The trade offs are obvious when you’re Google, and all of a sudden, they’re not obvious when you’re trying to come up with… support net… care net? What’s the word? Social safety net. When you’re trying to come up with a social safety net, all of a sudden all of these concepts are completely mysterious, but I basically think that I got to… half of this story is how I got to maintain my denial for so long. And I got to continue to maintain my denial, I think, because I had a job where I could lie down all the time. And it was only a 40 hours a week job, anyway. I was never working after five or if I was, it was a special occasion… a lot of things about it. It also started at $12 an hour. So I wasn’t… not that architects make a lot of money, but I wasn’t making architecture money in this job, but I was pretty functional. So, continuing to be in denial… and so I got pretty stable at that point. So there was a little bit more disruption, my boyfriend and I broke up, so I had to move and… we broke up cause I was like, “I think I’m a mess.” He was in grad school then, and he, I think, went home for spring break or something. And I went out and did some stuff when he wasn’t there. And I was like, “I haven’t been doing anything. I’m not functional. I’m not functional, and you are supporting me in ways that we’re not seeing or acknowledging. We’re not calling this a caretaker dynamic, but it is.” And like, “I don’t want to be non…” nonconsensual is the wrong word because he was not… it wasn’t directional, but there wasn’t an agreement. We had never created an agreement that this was going to be the dynamic, and it was just kind of happening. And on top of that… yeah, just all of it, it was happening. And so he went home and I was like, “Okay, when I have to take care of myself, I don’t really do it better, but I’m pushing myself better and I’m confronting some different things. And ultimately, I think we have to break up because I don’t think that I’m going to get myself together, whatever that looks like, in the context of this relationship. And that’s not you and it doesn’t have to do with you.” So we broke up, I moved in with a new person.
I was now working a full-time job in a coworking space where there were lots of people and interesting young people who were doing things. So it was a really good transition time, and I ended up. Through the context of this coworking space, starting a writing group. Cause basically, what was happening at that point of the, “I don’t have any of the language for anything that’s going on,” is I woke up at 3:00 AM with paragraphs cycling through my brain that are just narrative paragraphs. And I’m like, “Fuck, I need to write this down.” So I’d wake up in the middle of the night and write a deeply personal essay about miscellaneous trauma and be like, “Okay, getting it out helped. Good note.” But I was like, “What the hell am I going to do with this?” Because it’s about, you know, my mom thought that I was possessed or my mom thought that all of my friend’s parents were in cults because that was a part of her whole thing. And that was messed up. And I couldn’t talk about it. Or when my dad was diagnosed with Alzheimer’s disease, when I was 19, I didn’t know anybody who had been through that and I didn’t know how to talk about it. And so I started a writing group basically on that pitch at the coworking space, I was like, “Hello. Do you write about things that you can’t talk about with anybody because they’re too personal? Come to my writing group.” And some people did.
And so it kind of evolved. And then we ended up starting an event in Toronto called Stories We Don’t Tell, which isn’t happening right now because of the pandemic, but was still… it’s still an entity. So it ran for five years. And basically, I was there for the first two. So I did a year of writing group and then two years of stories we don’t tell. And while I was doing that, because I was one of the co-founders, I told a story almost every month because we’d have to round out the lineup. So we were bringing… new people came in, new people wanted to participate, but new people are not used to turning around really personal stories in two weeks. So we were just trying to pad it until people were ready, and so I did something almost every week. No, sorry. Almost every month for two years, I did at least 15 to 20 events, and it was therapy. That wasn’t the point, but I had… I’ve glossed over a couple other times that I went to try to see therapists, and I just had the same outcome of me being like, “I think I’m a mess.” And them being like, “Good for you.” This isn’t You know, I’d be like, “I think I need to deal with this.” And they’d be like, “Yeah! Right.” I’d be like, “Okay, if this is what therapy is,” and I know it isn’t always, but like, “if this is what therapy is, I do not need to pay for it. I’m sorry.” And so I think for me, I stumbled onto this thing that had a really, really profound effect on my trauma processing that I didn’t… that wasn’t intentional, and that I wasn’t even fully aware of at the time, but… oh, I also, at the same time, right after I moved to Toronto, I went no-contact with my mom. So Will and I broke up, I stopped talking to my mom, and I was in this new job doing… in this new context. So I was like, “Okay, I’m just gonna get through it.” And the idea… this was the intention of the Stories We Don’t Tell, but it was like, once you’ve talked about some of this stuff in front of a room full of people, and the room… the audience is designed in such a way that, you can see people you’re not lit out, or whatever, but you realize that afterwards you’re still a person and nobody hates you. And it has this really good feedback effect. If some of the gremlins in your brain tell you that talking about the tough stuff will make everybody hate you because it’ll like… you’re too much.
So I don’t know, over the course of like three years, it had a huge impact on all of that stuff. And one of the biggest things is even… with alcohol, so I did not make any conscious effort to change anything. I think because I was still functioning enough that it wasn’t the biggest fire. But one of the impacts of just doing this is I was still drinking socially all the time, and I almost never blacked out anymore. And I was like, “That’s weird. I can tell that I’m doing better, but why would that be the case?” I have a few ideas, but I was just kind of aware of it. And I was like, ” Okay.” Maybe previously I had been like, “Cool, I need to stop that completely.” And substances are so complicated because we all have different relationships to them. But for me, I was like, “Oh, after a couple of years, for me, I can see really clearly that alcohol wasn’t the problem.” Something else was the problem. And when I drank, I, of course, it’s a coping mechanism. I’m numbing. So whatever’s going on in there. I’m gesturing vaguely at my brain gremlins take over. So that was… so this is when I was like 27, 28. This is the pinnacle of my most functional time. So all of a sudden my mental health is really great. I still don’t have language for why it may have improved or why it may have been suffering previously, but I can just tell. And I’m really busy. I’ve become more active. Some of that was also coping mechanisms. I was like, “Okay, I have to get, I have to find ways to get myself out of the house.” I’m a routine person. I was volunteering. I was doing a lot, honestly. I was doing a lot, and whenever I thought about it, I had crushing anxiety about when there would be time for rest in my week. But I was like, “Hmm, that’s weird. Maybe other people are also burning out.” But everyone else was fine. So that was around 27 or 28.
And then that’s when… I think the next catalyst is that I moved into a moldy apartment. So I was living in a basement that was fine. A basement with no windows in the main living area at all, and one small window in my bedroom that I almost certainly could not have escaped through and was definitely an illegal apartment. Yep, great times. In that apartment, I wasn’t really aware of anything, and I moved into a new above-ground apartment. It was bigger. Everything about it was great. And there was a gross patch on the bathroom wall that was obviously mold that had been painted over, but I was like, “Whatever, this is what it’s like to,” I lived still in Toronto. So, “This is what it’s like to live in an apartment in a city,” if you can’t afford the fanciest condos available, new construction, which frankly also, I think are probably environmental pits a lot of the time, but I was like, “No big deal. If it was a problem, someone would have done something about it already.” Like, I don’t know what I thought. but I got eczema right away. And so, I talk a lot about this in the episode one, too, but the eczema was the first thing for me that was the beginning of the cannot-come-back-from decline, as opposed to the ignore-everything-and-keep-going, which had been working for me so far, as far as these things go. With at least three periods of spending many weeks in bed that I’m not thinking of as a pattern. So I did the eczema, and then I changed my diet. Which I talked about a lot. I did the Candida Diet. It made my eczema go away, but removing alcohol, removing caffeine, removing sugar from my system was a hard hit. And so I couldn’t push through anymore. It was like I did the diet, the eczema went away.
I started reverting to what is like… I just saw the word chronotype. Did you see this floating around Twitter? The concept of chronotypes, so it’s basically like there’s a natural deviation in our, what’s the word? Our rhythms when we… circadian rhythms. And those are chronotypes. So my natural chronotype basically is go to bed at 7:00 PM and wake up at 5:00 AM. That’s what my body prefers, and so I started waking up earlier after I changed this diet. So I started going to bed earlier, and I felt really good if I stayed exactly in the pattern which is not possible when you were really busy. So I basically just felt great for a couple of months. I started a new job. It was an actual nine to five job, sit at a desk the whole time. And that was okay for a while. And I just deteriorated from there basically. So I got more and more exhausted. I was getting just getting worse and worse in other ways, but my skin was better. And now, in retrospect, I’m like, “That was mold.” I moved into a moldy house later, which was when things got really, really bad, but basically that entire period… so I’m going to do a quick list summary because this is… I talk about it so much in episode one, but it was like eczema, diet, crushing fatigue, and orthostatic intolerance episodes. And then, antifungal prescription treatment that was actually pretty effective and brought me back for a while. And then we moved into a moldy house again, and I became completely bed-bound, stopped working, could barely converse, pretty much lost my mobility, recovered, left that house, incredibly was able to do that. Had a ton of support for this part, left that house, recovered, and that’s kind of where things were when I recorded episode fifty. So now I look back at this entire time and I’m like, “That sounds like it might be a mast cell problem.”
Drew: [00:55:03] Yeah.
Brianne: [00:55:03] Because 1.) Mold, huge mast cell trigger, hugely correlated with EDS turning into ME, which I like knew… I certainly had heard of chronic fatigue syndrome. 2017 is when I probably first saw the words ME. I hadn’t even looked at it… since I was a teenager, I’d always been like, “Well, maybe I have chronic fatigue syndrome, but everything I know about it tells me that if I say that people will just be mean to me. So I’m not going to worry about it.” So yeah, like, mold, the diet thing, I’m also like, “That sounds…” probably, I moved into a moldy apartment. The mold tipped… overflowed my histamine bucket, so I started to get eczema. I changed my diet, which reduced the overall load, but things were still messed up because I was still in a direct exposure situation. That’s what I think now, and similarly in the other house, I’m like, “Yeah, that was the toxic mold exposure. And probably that caused a mast cell cascade type thing.” So that’s my re-interpretation of those events. And then, after that, I… we moved to Massachusetts. We live in an old house that is so old it’s plaster, which can’t grow mold. So it is not perfect, but it’s… I don’t know.
So far… the biggest thing that I’m aware of now is when I have really bad fatigue, when I’m here, it’s all dysautonomia fatigue, which is like orthostatic intolerance. And it’s not “my brain is filled with bees and doesn’t work” fatigue, which I’ve now associated with a histamine reaction. Because when I lived in the mold house, I couldn’t… my brain was filled with bees all the time. And I just called that fatigue. Now I’m like, “Oh, that’s a different thing.” Okay. So then in Massachusetts, it was the first time that I ever got real medical care, I would say, honestly, despite this story being entirely about pursuing medical care. And so in episode 50, that’s all I talk about, but I found out I have cervical stenosis. I found out I have small fiber neuropathy. I found out I have… I confirmed that I have POTS. I already knew at that point and that… so that was at this time last year, which is when that episode recorded. So good, we’ve been talking for an hour, and I have just brought us up to the last recorded part of the story. And so what has happened since then is that I went to see a physiatrist, to ask about my cervical stenosis and she was just like, “If you want pain management, you’re weak. And if you don’t want pain management there’s nothing else we can do for you,” she didn’t say it in those words. But that was the takeaway because I was like, “I just want to know if this is degenerative, what I should keep an eye on, and if there’s like any thing that I could be doing?” She’s like, ‘Well, here’s some really terrifying side-effects of pain management that would make your life worse. If you want to try it.”
Drew: [00:57:56] Word.
Brianne: [00:57:56] It’s like, “That’s not what I asked you.” She’s like, “Yeah. You know, we can do a nerve block, but because it’s neck pain… because it’s in your neck, here are all the consequences.” I was like “One, this is a weird way to deliver it anyway, because if I were in enough pain that I needed a nerve block, do you think that this is helpful? And two, I’m not, and I didn’t ask about it, so I don’t know why you went there.” Both sides aren’t great. Okay. So then… so I saw her blah, blah, blah, and so that was kind of a dead end. And I was just like, “You know what? I’m gonna wait until next summer, and just try to decide what to do because I’m not doing great, but I don’t have an overarching diagnosis. And I just don’t know how to plan for the future.” Basically, I’m avoiding mold. I eat a weird diet. I rest a lot. And I was pretty functional last fall. I talked about this. I would go… I was going to the gym to use the recumbent bike, so that’s pretty good. Just leaving the house, you know?
Drew: [00:58:55] Yeah.
Brianne: [00:58:56] And so that was kind of my plan, and then obviously life got in the way. So in… actually over Christmas, I went back to Canada… or it was after Christmas, for a funeral at the end of December, and I picked up a bug. So Adam and I both got a virus in late December. And we were kind of a mess for two weeks. We didn’t get sick until we got back, but like two days after we got back, we just both had fevers for like a week, and then we both had… I forget the trajectory, but so we were sick at the beginning of the year, and I started to fall behind on the podcast at that time because of that, but then in January 2020, I was like, “That’s fine. I have the rest of 2020 to get my life together. So no big deal.” And then I did a TED talk in February, which now feels like it happened on another planet, but I recovered enough from the virus that I could do that, which I had already committed to, but I… cause I was like, “Am I going to go? Am I going to sit? How am I going to do it?” And I ended up doing it standing because I have a lot of nervous energy and I don’t like talking while seated. And then of course COVID happened. So I think… this is one of the things… I know from Twitter that it’s affected a lot of us in obvious ways, which we don’t need to talk about right now because there’s… I’m working on a project, and there are plenty of projects that are about sharing those stories. But obviously a lot of us have been affected very directly because we’re at high risk and it has all of these implications, but also a lot of us have been affected indirectly, I’ve discovered, just because of the elevated stress levels. So I think I did a Twitter poll about it in May, and so many people were like, “I’ve been in a flare since it started. No, I don’t have COVID.”
And so the way that that looked for me is that I was stressed and hyper functioning at the beginning, being like, “Okay, cool. I’ll just stay informed and make sure that I can help people and make the right choices.” And what happened for me in March is that the pattern of being like, “I have this underlying health problem that I don’t know what it is, and so I have to make different risk assessments than other people.” And then other people being like, “Your risk assessments aren’t necessary,” turned out to be hugely triggering, and I don’t think I’m… I don’t know if I’m explaining the dynamic well, but hopefully most people know kind of what I mean. It’s just, people want to blur over health boundaries for most of us, in our regular lives, and all of a sudden the entire media narrative is about that. It’s like about how we’re disposable, but also how us wanting to take precautions was offensive to other people. And so at this point, at the age of 33, I was like, “Oh, I notice that I am behaving as if I’m in fight or flight mode. I’m in a trauma activation cycle. My amygdala is firing.” That’s the wrong word to use, but that’s fine. And so I was like, “Okay, just like, breathe, wait it out. You know what it is.” And okay, this is… there’s a couple of steps to this. So the first thing is that Obviously, this was not a new feeling. I’ve had it. And I used to have it all the time. But when I lived that way all the time, I didn’t identify it because it was all the time. And when it started to come down, that was one of the things that I noticed was like, when I was doing Stories We Don’t Tell, still living in Toronto, blah, blah, blah. And I was starting to stabilize like my mental health was starting to stabilize. I was like, whenever I hear from my mom, so if she texts me or if she emails me and we’d been no-contact but still some, things happen. I would immediately. switch realities is the only way I knew how to describe it at that time. So I’d see my mom’s name in my inbox and the rest of the day, I thought that all of my friends hated me. I thought everything, whole thing it’d be like,
Drew: [01:03:06] Yeah
Brianne: [01:03:07] so in my early twenties, I didn’t see it at all. That was just how I was all the time. And then in my late twenties, because I had been no-contact and because I had apparently succeeded, that’s the wrong word, but managed to process some trauma. It became more clear because it was not a regular pattern. So I could tell that something was happening and it was the same even like, you know, I’d hear from my mom and then I’d start picking a fight with Adam and then I’d be like, why are we fighting about this? I don’t want to be the kind of couple who fights about whatever, like, whether or not we should already be watching the movie that we agreed on together. it would be stuff that I knew I didn’t want to be fighting about, but I had clearly picked the fight. I was like, Oh, those are connected. I don’t know what it is, but those are connected. And so this year in March, I was like, yeah, I think of it as amygdala hijacking. I’ve read significantly more about trauma than I had five, 10 years ago, but I was talking about it on Twitter and someone was like, that sounds like an emotional flashback. And I was like, excuse me. And this is one of many stories that are like, I knew all of the setup for this information, which is that, I knew that flashbacks Aren’t the way they look in movies. I knew all of that, but I still was like, that’s not me. I grew up suburbs. It wouldn’t, it would be offensive for me to use that language. And then I was like, that’s exactly what that was. And that’s what, not all of those, but many of those were, those were emotional flashbacks. That’s a hallmark of and I know that the terminology on this is kind of disputed, but that’s a hallmark of C-PTSD specifically and generational trauma. And so all of those concepts that at this point I’ve been thinking about for at least five years, I’m like, okay, no, I have not pursued therapy since April, but maybe those labels are actually really appropriate and it would not be, I don’t know what like appropriation to use them given all of these things
Drew: [01:05:11] Well, I mean also even… I feel like because terms like that have been appropriated so much. Even though I personally am like, “Yes, I have PTSD. I have a paper diagnosis of PTSD.” Which I don’t even… I don’t know. I feel very strongly that self-diagnosis is enough for someone to use terms, but no one can argue that I would be appropriating those terms. I recently was having just basically the movie version of a flashback, and I turned to Margo and I was like, “I’m having forced recaps.”
Brianne: [01:06:03] This other way more casual thing. Not a big deal.
Drew: [01:06:09] Yeah.Because I just… I hear the word flashback, and I just associate it with people… I don’t want to use the word appropriating, but like diminishing? Invalidating language
Brianne: [01:06:31] It’s when people use health language euphemistically, is kind of how I think of it.
Drew: [01:06:35] Yeah.
Brianne: [01:06:36] They don’t mean… they know that they’re not talking about it. It’s not when people think that they’re using it, but they’re using it wrong. It’s when people are trying to make a point, and they’re exaggerating by using these health or mental health terms as a euphemism. Yeah. Something like that, right?
Drew: [01:06:52] Yeah. Like when people, I don’t know… walk into a Starbucks where they got the wrong order one time and they’re like, “Oh, I’m having flashbacks.” Like, “No, you’re not, and you know you’re not.”
Brianne: [01:07:08] Yeah. And also that we do… that’s a specific thing, but we do also separately have a connotation for the word flashback. That really is about memory. That’s not associated with trauma, which… so it’s when people are kind of trying to joke that something was traumatic by invoking trauma language. It’s really different than when someone is literally like, “I haven’t been here in a long time and I’m having flashbacks to other times that I’ve been here.” Memory.
Drew: [01:07:35] Yeah. Because there’s also two film constructions of a flashback. There’s a movie about someone with PTSD where all of a sudden they are literally in Vietnam again. And then there’s just a narrative movie where a person just goes back into their childhood home and remembers something, and we are shown this memory.
Brianne: [01:08:05] Yes.
Drew: [01:08:06] So I don’t like using the word flashback either.
Brianne: [01:08:09] Yeah, it’s not… for stuff around trauma, it just doesn’t… yeah. It ends up not evoking what it actually is Somehow but yeah, so I’m like, “Right. So it’s not inappropriate to use that language for these things.”
Drew: [01:08:26] It’s not inappropriate, but it can also sometimes just feel wrong in a way that’s complicated.
Brianne: [01:08:32] Yeah. Yeah. And I also… it’s interesting because as we are about to pivot to, I feel this way about self-diagnosis related to physical health too. I am 100% in favor of it, and also I totally have a lot of my own hang ups about it internally. Okay so March, so I had what I now believe… I had a kind of intense emotional flashback that seamlessly segued into two panic attacks in 48 hours. So, I just was really running on empty for… at that time, and as I know, a lot of people were because the world was really, really hard all of a sudden. And I was one, having… the flashback was definitely triggered by that kind of stuff in my interpersonal dynamics of just being like, “Oh my God. I now think that I have one, a ton of trauma from everything that I just… “a ton of,” I don’t mean to be exaggerating, but trauma from the things that I’ve just talked about, and also the through line of having grown up in a disabled body that was not acknowledged as a disabled body and that was the one that felt like it got hit this time. And that’s the one that’s felt like it’s gotten hit quite a few times over the last few months, but, so yeah, so that’s… so I was kind of in that place, late April, or sorry, late March/early April, where I was really just trying to be so nice to myself because I could tell that it just hadn’t come down from that yet basically.
And then on Easter weekend, Adam’s family did… they normally have an Easter dinner together. And so they did a call. They did a Zoom call, and I didn’t sleep very well the night before, like really poorly. And I knew… so we had already made it clear that I might not be able to join because I was like, “I can’t do group chats in this state, but I’ll try to say ‘hi.'” And then I slept really poorly. So I really knew that I shouldn’t have done it, but I hadn’t had major fallout from something like this before. So I was like, “You know what, I’m going to go on the call for like five minutes just to say ‘hi’ to everybody, and then I’ll go lie down.” And that was a really, really big mistake. So. I… we were on a couch. Adam had the computer. I was just sitting beside him, and I was kind of slouched down, and then I started slouching more, and then I started twitching, and then I started twitching a lot. And I’m doing the thing that I always do when my brain’s not working, which is like, “Just be casual.” I don’t have enough brain function to think through what I’m supposed to do or set boundaries. So apparently my brain defaults to just like, “Get as comfortable as possible and wait for it to end.” Which is a bad strategy. So after a couple of minutes, I was really just in bad shape, twitching a lot. So I went and laid down on the bed and just kind of listened, and I have not recovered from that episode. So… and I think using the word twitching overstates it, I don’t know. I think they’re fasciculations… I don’t even know if that’s how you pronounce it, but it’s involuntary movement. For me, it’s like my whole torso was shaking uncontrollably basically, and I could feel it as exhaustion and sensory overload gets much worse. So I think that was also… it was like trying to listen and parse a call in that state was extremely unwise. Yeah. So I… that night I tried… I didn’t know that I had made a huge mistake yet. I thought I had made a regular mistake.
That night, I tried to brush my teeth, and I couldn’t stand up straight because I felt like I had… I was like a dog wagging my tail. My entire torso was involuntarily just wagging back and forth. I was like, “That’s not normal.” And now in retrospect, I’m like, “Oh, both of my SI joints were out.” What was happening is that neither of my SI joints were doing… and none of the muscles that are supposed to support… just that whole system was breaking down. So I was wobbling from the SI joints. And then, so I tried to brush my teeth, couldn’t do it standing, switched to brushing my teeth in bed immediately, which I hadn’t needed to do in quite a while. Was like… the next morning I was like, “Cool, I’ll sleep it off.” So the next morning I get up and try to go about my normal life, which is not a healthy person’s normal life, but there’s… I’ve gotten some amount of function back compared to other situations. So I get up and go downstairs to make my coffee, and that was a mistake too. I don’t get all the way through it, I think or if I did, I was twitching really heavily at the end. And I was like, “That’s not safe for me anymore because if I’m pushing my body to failure then I’m going to keep failing.” So I basically, not that I had a choice really, but put myself on bed rest for… until that got better and it hasn’t. So I’m… okay, that’s… it’s improved. So I was on bedrest and in that time, my SI joints were a mess, and they were also in a lot of pain, and I was heating them a lot. And I rolled over in my sleep one night and I heard my shoulder pop, and my shoulder already is not a happy shoulder. It’s been an unhappy shoulder for years. It’s really painful when I drive, when my elbow is not supported, because it just feels like it’s hanging from the joint. And as I’m saying this now, I’m like, “Huh, what an interesting combination of words that…” I was literally making the podcast as I was describing myself that way, me, interviewing many hypermobile people about their ligament laxity, me, with my hangy shoulder, “Huh. What a strange unrelated issue that maybe I’ll mention to someone someday.” So I dislocated my shoulder, but I didn’t know because I’d been living with a lot of shoulder pain for years. But it was worse, and it popped back in a couple of days later, at which point I was like, “Oh, that was a dislocation.” And because of Twitter, of course, I had been talking more about it. I’d been like, “Oh, a lot of people who are hypermobile don’t know that they’re hypermobile. It’s actually not obvious.” It’s not obvious. You could even be having subluxations and not realizing it. And I think, tell me if you relate to this, but when I had heard people describing these before both in interviews and on Twitter, because people talk about it on Twitter all the time, I was like, “Oh, that sounds like a really serious thing that happens to other people you’re nodding.
Drew: [01:14:45] Yeah. I went to school with this girl who… her shoulders would pop out all the time, and now when I think about her, I’m like, “Oh, maybe I should reach out to Michelle and be like, ‘Hey,'” “look into EDS, maybe.” But she used to talk about it all the time. Like, “Oh, my shoulder popped out. I just have to pop it back in. It’s fine.” And I was like, “Oh, okay. So I guess if that happened to me, I would know because Michelle knows when it happens to her.” And you know, apparently not.
Brianne: [01:15:21] Nope. Not at all. So I did that, and then I also… in the same week as my shoulder had been dislocated, I knocked my jaw while I was laughing or something, and I like felt it… it didn’t fully dislocate, but I definitely subluxed it cause it was out of alignment for a few hours, I want to say. And then I was, “Oh, I’ve done that before.” And I remembered that when I was in high school… this is such a me story. So I laugh with my mouth really wide open all the time. And I used to get made fun of about that in high school, which is pretty benign, but I covered my mouth when I laughed. And so I was laughing, which meant that I was shaking, and I went to cover my mouth, and I just hit myself in the face. And presumably subluxed my jaw, but I was like, “Oh, it feels like my jaw is out of the joint, but if it were dislocated, I would know.” So I’m just running around telling everybody that my jaw is out of alignment, but it’s no big deal cause I’m, in high school, already great at that. And so then I started to be like, like, “Ohhhhhh. Oh.” There’s a couple of Twitter conversations where I’m like, “Ohhhh.” And then, this was my shoulder. I’m like, “Oh my God.” I’ve had ligament laxity in my shoulder for quite a while, and my shoulder is much worse than any of my other joints, which the only thing that I can connect it to is probably water polo because I played goalie and I played six or seven seasons. And I wasn’t good to be clear. I was a bad athlete, but I had a good throwing arm. And I’m like, “Oh, I bet throwing a lot… it’s not heavy, but the action of throwing a ball 20 meters all the time is probably…” I was probably hyperextending my shoulder all the time. That’s probably why I was good at it. And I probably have, ongoing use issue… repetitive, whatever, repetitive motion injury? I forget. I feel like it doesn’t matter.
Drew: [01:17:14] I think that’s what it’s called.
Brianne: [01:17:15] Repetitive strain? People know, that’s the one. So that… so I was like, “Okay.” And somebody, when I first got sick in the mold house and I was trying to figure out what’s going on. And I was just getting nowhere with doctors, and my doctor was being really unhelpful. And I talked about this in episode one. Somebody in my alumni group had been like, “My sister was just diagnosed with EDS. You should look into that. Could that be it? She had a really frustrating experience too.” So I Google it and I probably ended up on the Mayo clinic website… you know, it’s a pretty generic… and I read it and some of them, I was like, “Huh, maybe.” But not enough of them. And so many of them are subjective, right? Like, “Do you have stretchy skin? Do you have a velvety skin?” And you’re like, “I don’t… I have this skin that I’ve had my whole life. I don’t know what skin supposed to feel like.” But then, and this is also… so I’ve read this like two years ago. I’m like, “Maybe, but probably not.” And then I’m like, “Oh, maybe I am hypermobile.” Because of this history of flexibility, because of these injuries, that was probably a dislocation, but I don’t want to call it that because am I appropriating dislocation language? Sincerely. and so I started looking at it more seriously. At some point I checked my Beighton score, which I’d known about the Beighton scale for at least two years at this point. Finally check it. And I never checked because I can’t touch the floor because my hamstrings are so tight. So I was like, “Well, I can’t do that one. So if I can’t do that one, why would I check any of the other ones?” Which is really not logical. So anyway, I have a Beighton score of five, which is the lowest, qualifying score for my age now because I can touch both my wrists with my thumbs, I can… both my elbows bend backwards, one of my knees bends backwards, one of the other one-offs, I forget. And I have the little heel papules, some of the smaller stuff. Plus, poor wound healing, I know now about. Plus diagnosed POTS, plus small fiber neuropathy is also often comorbid with EDS. So I… and then another thing that happened was that a couple people on Twitter were passing around other diagnostic lists that some of their specialists had used. So we should just talk about hypermobility right now, because I feel like there’s a lot of stuff that people probably don’t know. So, okay. EDS is Ehlers-Danlos syndrome, which is a genetic connective tissue disorder where, presumably faulty collagen, and then maybe some other stuff. But that’s what we know.
Drew: [01:19:47] Yeah, I think depending on the type, it can be faulty collagen or a different type of connective tissue.
Brianne: [01:19:55] Yeah, and there’s many types and the number of types is going up because it’s an area of active research. So there’s classical EDS and then hypermobile EDS and then many more… vascular EDS. And I can’t name them all. But the reason that this matters is that vascular EDS has historically been associated with higher risk of mortality. So it causes increased risk in surgery and some other stuff. And so if nobody knows about it, it’s really dangerous. It’s really dangerous to have undiagnosed vascular EDS specifically. And then, so… okay. So I don’t know enough about the history to say when it was identified or how we got to 2017. But what I do know is that genetics research has made it so that they’ve identified some of the variants for some of the types. Right. So if you get tested, if you go to a geneticist and you get genetic testing for EDS, some of the types of EDS can be confirmed for genetic testing, but a negative genetic test result doesn’t rule out EDS because not all of the variants have been identified, even for the types that can be genetically diagnosed. So like vascular or classical, et cetera. Okay. This seems true so far, right?
Drew: [01:21:17] also… it’s thought of as a rare disease. So often when you go to a doctor and you’re like, “Hello, I think I have EDS.” They’re like, “No, you couldn’t possibly have that because that’s a rare disease.” So it’s sort of a self-fulfilling prophecy.
Brianne: [01:21:36] “It’s rare, so you don’t have it.” Yes. Okay. And so then the next thing is that I guess as a result of the genetic research has been going on, a certain set of traits that are mostly the physical hypermobility… so, whereas vascular is like your vascular system is most impacted. They were finding in this patient body that a lot of people were… their “primary problem,” I’m gonna put that in air quotes because we know that the research is still really missing a lot, but… was the actual physical hypermobility. So the biggest problem was the joint… was subluxations and dislocations as a result of the disordered connective tissue. But that was the biggest problem that people were having, and so that patient population they’re trying to identify a hyper… a gene variant for the hypermobile type.
Drew: [01:22:29] Yes.
Brianne: [01:22:30] Okay. Because there are not any identified so far. Okay. And so instead of what one might do, which is design a study that would specifically filter for people who you knew had a first degree relative with the condition, what the EDS Society and whoever else they partnered with to come up with a new diagnostic criteria did in 2017 is they wrote diagnostic criteria for the hypermobile type, which one, checks your Beighton score, and gosh… there’s so much more, there’s always so much more to talk about. So the Beighton scale, which I just referred to checks the hypermobility of five joints, or five regions and five regions only. And so some people are extremely hypermobile in other joints, and some people are stiff because of their hypermobility. And so they have low Beighton scores, even though they are hypermobile to an observed… an informed observer. Okay. So, the Beighton score is required and it’s different a little bit by age, to account for that slightly, but kind of not enough, which is why I said five would qualify for me, but it wouldn’t qualify for a child. And so the Beighton score is for sure required to be diagnosed with hypermobile EDS. And then the next part is basically… there’s a couple of different sections. So there are serious complications that basically evaluate the severity. So like, bladder prolapse is on that list and there’s a bunch of other things that kind of could happen. And if all of them have happened to you, then you’re calling it… saying severe isn’t really fair, but you have a lot of observable complications that we can pretty comfortably attribute to EDS, I think is how that list would be explained. So there’s that list… there’s a list of severe complications. And then there’s, just a couple of things about, “Do you have frequent subluxations or dislocations?” And then the other requirement is, “Do you have a first degree relative who meets the criteria for this condition?” So the implication of that is that if you have had a lot of complications and you have a high Beighton score and you have regular dislocations, then you meet the diagnostic criteria for EDS without a first degree relative. And if you have a first degree relative, you meet the criteria without having a lot of complications, you don’t need to have had any of those complications if you have a high Beighton score, a first degree relative and regular subluxations and complications… dislocations. I lost myself there. So I know that you already know this, so maybe can’t tell if that made sense, but did that explanation make sense?
Drew: [01:25:20] It made sense to me, and I haven’t looked at the criteria for a few months.
Brianne: [01:25:26] Okay. So before 2017, there are people who did not have first degree relatives and did not have high, serious complications who were diagnosed with EDS, but after 2017 people who didn’t meet the criteria, who would have met it before, likely, are now diagnosed with, and this is when things really get messy, to be honest, because different doctors interpret this differently, but the idea is that people who don’t meet the criteria, but are obviously hyper mobile and would have met the criteria before, get diagnosed with something called hypermobility spectrum disorder. So that is happening, and it has caused a lot of upheaval in the patient community because some people had already been diagnosed, and they no longer met the criteria. Some people… and so… all of this context is relevant to both of us for the same reason, but I’ll get to that in a second. So hopefully that all makes sense, so I already knew that. That the criteria to get diagnosed with hypermobile EDS is pretty limited, and I had a high enough Beighton score. And I have… I do, in fact, have subluxations and dislocations that I hadn’t really been registering before. Certainly I haven’t had a ton of dislocation. Some people have really… like you say, some people have dislocations that they can’t miss, but subluxations, you can miss. If you’ve had them forever, you think that that’s just what a body does and
Drew: [01:26:53] Yeah. Like, “Oh my ankle is just clicky today.”
Brianne: [01:26:57] Yeah. Great. Perfect. So at the same time, a couple of people had sent me… or were just sharing on Twitter, and so I had them… lists that other specialists were using that were like, “Here’s what is… kind of the systems that are more actively affected by a connective tissue disorder.” Because it’s your whole body. It’s not just your joints, and we kind of know that because we see this with the co-morbidities, but the actual checklists that they were using to screen people for connective tissue disorders. So I have a couple other of those, and on the ones that I had seen, I was scoring high. I was scoring within those specialists’ diagnostic range. So I printed off one of those, I printed off the EDS diagnostic criteria, and I went to my neurology appointment, just my regular neurology check-in, which was in May, I think. It was in the spring of this year. So… oh actually, no. There’s something before that, so I went to my PCP for my annual same information though. And it was a tele-health, and my PCP so far has been pretty good about referring me, which is also new. I never asked for referrals before this because it never occurred to me cause they didn’t blah, blah, blah. I didn’t know anything, and now I realize that healthcare is a mess and you have to find the answer before you ask for it.
So I first went to my PCP. And I was like, “Hello. As you know, I have POTS and small fiber neuropathy, and we’ve ruled out a bunch of stuff because all my blood work comes back normal. I want to look into connective tissue disorders because I think I dislocated my shoulder in March. There’s a bunch of reasons.” So she was like, “Cool, I’ll refer you to a rheumatologist.” And I already knew that that was not necessarily a great plan, but I was like, “I want to see the local rheumatologist because. I want to know, like, if she is good, I don’t want to not know that.” But in my head I was like, “And also I’m going to intend to ask my neurologist for a referral to a geneticist if this doesn’t work out.” So I went to the rheumatologist in July, and that was also tele-health. So she didn’t physically examine me, but I just described it. And I said the same thing, “I have POTS. I have small fiber neuropathy. I have… I just dislocated my shoulder. I’m giving a different version of my history because I know what I want to talk about with you.” And I was… and my SI joints had been bugging me a lot. So I talked about that. And so she’s like, “Okay, well, I do want to rule out arthritis,” which I want to say at this point that I have probably been screened for rheumatoid arthritis almost every year for the last five years. I know that it exists in a seronegative form, but it just doesn’t make sense for what’s going on. But anyway, she’s like, “Okay, so first I want to just check for all of this stuff, and then if that comes back negative, then you’re good.” So I was like, “Great. You’re my favorite kind of doctor.” And because I am lucky enough to be in a location and situation where I knew that I’d be able to ask for another referral, I was like, “I’m not even gonna fight with her.” Being in a position where you don’t have to fight with doctors is one of the best things ever. And I have not been in that position often before, but I was like, “Cool. Let’s just test for what you know about, because you’re not going to be able to treat anything else anyway.” So I got blood tests. I got x-rays done on my SI joints in July. And this is actually my first… maybe my first trip out of the house during the pandemic, because I became bedbound almost exactly the same time that my state went into lockdown. So I kind of… the logistics of lockdown weren’t affecting me as much because I was not functional. So I did that, and it was actually really well done from a lockdown perspective. The blood draw was on the porch of my doctor’s office, and you wait in the car. All of that stuff. That was good. But anyway, I don’t have arthritis, which I already knew and I don’t have, AS, which is what I think she was screening me for, ankylosing spondylitis, which definitely manifests in the lower back in the SI joints. So, yes, I understand why I was screened for it. Happy to be screened for it. Still don’t have it, and she didn’t make a follow-up appointment at all. Just sent, you know, same deal, canned message with the x-rays, “Looks good!”
And. If I were not my current self with the information that I currently have, I would have felt exactly the same way that I felt three years ago when this happened to me, which is like, “What the hell am I supposed to do now? What am I supposed to ask for? I’m not fine. This isn’t fine.” But because I… because of, I guess everything that I’ve learned over the last couple of years, especially through the podcast, I then just went to my neurologist who also has been really great about referrals and made the exact same case. And my neurologist is the person who did the initial testing that picked up my POTS, picked up my small fiber neuropathy. And he’s a very curious doctor, which is rare. He, on the one hand had been like, “Yeah, these are pretty subtle and, it might take us a while to figure out what’s wrong because you might not meet any of the diagnostic thresholds, but of course we would want to monitor and figure out what’s going on.”
Drew: [01:31:57] “Why wouldn’t we do that?”
Brianne: [01:31:59] Yeah. And so I chose to go to this appointment in person. I had the option of doing it over the phone. So not on telehealth, but just telephone or in person. And I was like, “I think this should happen in person. Cause I feel like…” So I decided to do that, and so I brought the same paper, and I was able to be like, “And look at my body, it’s a mess.” And he was like, “Yeah, you’re tall.” And so in his head, he’s very focused on Marfan’s for some reason. He’s like, “You don’t really look like you have Marfan’s, but you are tall and there are complications. It makes sense to screen you for it.” He’s like, “I just don’t know who does that. Is it a rheumatologist?” And I was like, “No, actually I saw a rheumatologist last week and she didn’t… knew nothing about connective tissue disorders, only screened me for arthritis.” And I had told her that I’d like to have tested negative for autoimmunity a lot. So. Yeah. So he was like, “Okay.” And I was like, “I looked on the Ehlers-Danlos society website because they have doctor recommendations,” which if anybody is in this process, look there. They’re not a widely beloved org for… partly because of the diagnostic criteria and I think a few other reasons, but their doctor list is… are reputed to be pretty good. And otherwise you could end up with a rheumatologist, like the one that I saw who just doesn’t know anything. So he referred me… so I had a list… anyway, so he referred me to a local geneticist who was not on that list because it would be covered by my insurance, basically. He was like, “I think testing for this is pretty expensive. Do you want to go somewhere…” I’m in western Massachusetts. So he was like, “Do you want to go to somewhere on this side of the state before you go somewhere near Boston? It’ll be covered. It’ll be cheaper. It’ll be easier.” And so in my head, I kind of thought the same thing. I was like, “I’m going to do that. And then if that person doesn’t know anything about connective tissue disorders, I’ll try to go to Boston eventually. I just want someone to look at me.” And so I just had that geneticist appointment like a month ago, and… wait, there’s one more thing before that.
Okay. And the one more thing before that is. I have started to leave the bed again, and I’m still brushing my teeth in bed. The end of the day is tough, but the beginning of the day I was starting to wake up a little bit more refreshed, and I started to go on short walks down to the end of my street and back cause that felt good. And so I was like, “Okay, if hypermobility is in the mix, I know that physical therapy is really important because you actually have to learn how to move your body, which sounds terrible.” You have to understand the safe range of motion, and you have to learn how to stay within it. And you probably have weird… your muscles may be in spasm all the time to protect your joints. So I kind of knew that kind of stuff. And I was like, “I think I’m at the place where I need to look at that now, because I feel like I’m recovering, at least from the crash that I had and whatever my new baseline is, is probably going to depend heavily on PT.” So I bought Kevin Muldowney’s book, which is what people recommend the most. It’s called Living Well with Ehlers-Danlos syndrome or something like that. And it’s a PDF that he sells on his website, but I bought it because basically the Muldowney protocol is what everybody recommends within the EDS community as like, “This is the best plan to try.” It’s good to do it with a physical therapist, but… because of course it is, but if you want to learn about it, it’s really focused on starting with your core muscles, because if your core collapses, everything else is going to fall apart. So it basically starts doing pelvic tilts, I think. Pelvic, pelvic, pelvic, and then eventually core. And then it kind of radiates out from there because that is a good strategy for people who have been mostly bed-bound with connective tissue disorders. Which I want to be super clear that it also is not the same as saying graded exercise therapy for ME. This is not that kind of a protocol. So I bought it and it’s like, “We really recommend that you work with our physical therapist locally, if you’re able to. Give them this book.”
And I was like, “That sounds like a lot, but I wonder if there’s somebody near…” because I live in a small town, and there’s a pandemic happening. I was like, “I wonder if there’s a personal trainer locally or just somebody who is completely local that I could be like, ‘Will you read this book? And do a couple of workouts with me because I just don’t know if I’m even engaging the right muscles.'” My awareness of my body is zero. So I did that and it makes that recommendation. Then I started Googling, and I think this was in September, maybe August. As it turned out, there’s a person who specializes in pelvic floor physical therapy in my region who also specializes in hypermobility.
Drew: [01:36:27] Perfect!
Brianne: [01:36:28] Yeah, and it specifically said Ehlers-Danlos syndrome on her website. And I was like, “Oh my God, what’s happening? Is this possible? How could this be? This is…” I felt like I had found a unicorn. Cause I was like, “This is exactly what I was looking for.” I assumed there wouldn’t be anybody nearby or if they were… blah, blah, blah, that it wouldn’t work for pandemic times. But it turns out that this woman who is hypermobile herself, her kids are hypermobile, et cetera. And she became a physical therapist. And she was running a clinic out of an office, and she closed the office at the beginning of lockdown. And started seeing a few patients on her porch of her house. Cause she… I live in a rural area. She lives in a rural area. You’re just looking out at some trees. She has some goats. She has some chickens. She gave me eggs once. It’s ridiculous. So yeah, I was like, “Okay, I don’t know for sure that I’m hypermobile at this point because literally nobody’s examined me.” And so this is what I mean about the self-diagnosis thing. So I’m feeling, “Okay. Well, I have a Beighton score of five, and I’m pretty sure I dislocated my shoulder in March and I have POTS and, and, and, but I don’t want to say that I have it if I don’t have it.” I have a big… and it’s not in a policing way. This is… cause you just kind of said something… not just, you said something similar. It’s not like, I don’t want other people to say it. It’s like, I’m so scared that my instincts on this are wrong. That I don’t want to say it until I’m sure. I don’t think that other people’s instincts are necessarily bad. I think that self-diagnosis is good and important and anecdotally very effective. However, I don’t trust my own… I don’t know, interpretation of my body or whatever.
Drew: [01:38:09] I have a question.
Brianne: [01:38:11] Yes!
Drew: [01:38:13] Um, So regarding that, I guess, if you know, because you might not, what is that block for you? What… are, guess, what are you scared is going to happen slash, where is that coming from?
Brianne: [01:38:34] I think that that has a long history too, because I think I have a history of more injuries that I didn’t register cause they weren’t serious. And I didn’t list, but I remember in eighth grade I was walking on an ACE bandage and crutches for a while after kind of no discernible injury. And they were like… I think I had a wrist brace for a while for the same reason. I had a lot of minor injuries that were not obviously caused by anything, that in retrospect were caused by something, but at the time kind of lined up with… I was definitely perceived within my family as kind of dramatic and stubborn and all of this stuff. And I don’t think it was just hypermobility. I think it’s all of this stuff, but it ended up that that was the role, and I was the youngest. I’m the youngest in everything. So I have an older sister, but I also have a lot of cousins, and I’m the youngest cousin on both sides of my family by… out of a lot of people. And so I think I was always trying to navigate the like, “Is it enough that I need to take the risk of doing the thing that will let people know that I’m dramatic?” and that was the frame of like, you know, “Should I wear an ACE bandage? Wearing an ACE bandage is dramatic. I dunno. Are you uncomfortable enough that…?” And it was never like, “Oh, you have an injury that you should be taking care of.” It was like, “How much are you blowing this out of proportion? And is it enough that you’re comfortable having other people be… say something about it?”
Drew: [01:40:08] Yeah.
Brianne: [01:40:10] I think that is a big part of it. And so the notion that there could be names for a lot of this stuff, and that they could be actual medical things is really… I don’t even know what the word is for that feeling. Cause it’s so disorienting, and obviously the process of recontextualizing and looking back and giving it a new name is ongoing and has been going for quite a while, but it’s still… that’s actually part of it. Is that, okay, if this is called hypermobility and if that means that I have a connective tissue disorder that I’ve had my entire life, which it’s possible that it doesn’t, but it probably does, contextually. Then that means that all of the people around me, most of my life who did care about me and thought that they were acting in my best interest weren’t, and that’s hard to swallow. So it kind of feels like… yeah, naming it and then… naming it means that you have to digest all of the implications of what that name will tell you. And it’s not like, “Oh, I don’t want to be hypermobile.” It’s just like, “Oh, I don’t… I’ve been living this… under the framework that whatever’s going on with my body isn’t a big deal. And if it is a big deal, that’s going to break my framework pretty bad.”
Drew: [01:41:39] That makes sense to me in terms of self-diagnosis, but I’m also curious, do you think that if you were to receive a diagnosis from a doctor that that would feel easier to swallow because obviously then you would still have to process all of that. So I’m just…
Brianne: [01:42:01] Yeah, I don’t think that it is easier. I think that… I don’t think have ever been… POTS, I was told about… POTS was identified in the doctor’s office for me. I didn’t know about it, and they were like, “You have it.” And it was kind of like, “Okay, cool. Now I’m going to reverse engineer it.” I don’t think it’s easier in that way. And can I put a pin in that? Because I feel like the experience that I actually have with the doctor is relevant to this question.
Drew: [01:42:30] Yeah, go ahead.
Brianne: [01:42:30] So I went and did an assessment with the physical therapist. And so she did… I saw her in person, and we both had masks on, we were on a porch. But she actually checked my Beighton, and also assessed literally my entire body since that’s what I was there for. And she was like, “Well, your Beighton score is five, confirmed. And you definitely have hypermobile mobile ankles. Your neck is hypomobile, which is that your neck is not moving as much as it’s supposed to. And when your neck is ostensibly relaxed, and I turn it, your whole body turns with it. So it’s protecting something. It’s in protection mode.” And so I was like, “Okay, I didn’t imagine this whole thing,” which is the level one validation is somebody who knows what hypermobility looks like has seen my body and agrees. Cause she was like, “You’re not like…” she’s like, “There’s a classic manifestation where people are really floppy.” She was like, “You’re not really floppy, but this is what’s happening. You’re definitely hypermobile.” And so a week later was when I had the geneticist appointment, which was also telehealth, but she did… I did have to go through my Beighton for her, which was difficult. I think a couple of other people have done this. And at the end, since… I knew this going in, I don’t meet the criteria for hypermobile Ehlers-Danlos syndrome. And the reason for that is that I have not had enough complications. And I don’t know my dad’s full health history because he died when I was 22.
And so I do know that my dad’s health profile really strongly suggests that this might’ve been in play for him because he needed ankle braces to… he played hockey. So he needed an ankle braces to skate, which isn’t typical. He wore a leg brace for the later years, which I think was an ACL injury maybe, which happens, but weird in conjunction with everything else, all of his teeth were falling apart, which I’ve since learned is also a common… dental stuff. He had really pretty severe environmental allergies. He couldn’t deal with scents. He needed scent-free spaces, which is pretty suggestive of mast cell. His health got a little bit better when my step-mom put him gluten-free when he was… already had dementia again. Just all of these… stuff that, in the pattern language that I think patients tend to look at when we talk to each other, and like, “Oh, you’re in the space. You have signs of MCAS you have kind of… He had GI problems. He had blah, blah, blah, blah, blah.” So on the other forms that I’ve been looking at that are like, “Here’s some of the co-morbidities to consider.” I was like, “There’s a lot of relevant stuff here. It would not surprise me if this were genetic.” And he also… so he died with Alzheimer’s, but that’s a probable diagnosis. It’s a clinical diagnosis. At the time there weren’t any… I think there are now, but there weren’t any lab tests that would confirm it. So it was like, “Well, we’ve ruled out everything else. So this is what we call this type of dementia is early onset Alzheimer’s,” and he was in his fifties, which also isn’t typical. And so… there was one more thing I wanted to say about that, but it’s gone now.
So, I had talked through that… oh! He had something called alien arm syndrome, which is that… so he had, had a tremor in his hand from when I was really young. And his hand kind of dance on the couch beside him. And as he got sicker that got worse till his whole arm was literally moving all over, and I’ve Googled this to make sure that’s the right name. It is. It’s sometimes called Dr. Strangelove syndrome because in the movie Dr. Strangelove, that’s his affectation, but there is also a real syndrome. I don’t know why they’ve been connected in that way, but I thought that was strange. Anyway so he had some neurological stuff going on, basically. And so I’m like, “This is really suggestive to me that what’s going on might be genetic. Even if our individual issues are different.” And the way that I stand normally, allegedly, I think I tilt my pelvis forward. My mom’s always commented on it, and she’s always like, “You stand just like your dad does.” And I’m like, “Mm, do we both stand like people who have lax ligaments? Because that’s what I’m starting to think.”
Drew: [01:46:30] Yeah. Yeah. That’s like what my mom used to say about me and my dad both being part-ostrich.
Brianne: [01:46:37] Yeah. You’re like, “Okay. So I know that the thing isn’t the diagnostic thing, but when all of these…” and also, okay, and this is why I talked to this a bunch at beginning… and then the other thing that I’ve… now I see anecdotally is how often there’s crossover between connective tissue disorders and neurodivergence as well. And I’m like, “Well, guess which one of my parents was like known to be neurodivergent in addition.” So in this constellation, there’s just a lot of suggestion. So. I go to… I do the tele-health appointment with this geneticist who I know is not an EDS specialist, but whatever, we’ll see. And it was a nurse practitioner of genetics. So she goes through it. She also screened me for Marfan’s. I think she did some other things. And she was just like, “Well, I can tell you that you don’t have vascular EDS. You don’t have any of the indicators of that. So we’re not going to test for it, basically,” because that’s the only one that insurance will pay for testing for it because of the complications. And so, “We’re not going to… there’s no reason to test for that. You don’t have Marfan’s. You definitely have a hypermobility syndrome,” is what she said. And I was like, “Okay, cool.” We got off the call. I also… I’m a slow processor in these moments. So it took me a full day to be like, “Wait, what actually happened in that appointment?” And I was like, “Okay, I’ll wait and see what she writes on my chart.” Because that was like, “Yes, you are hyper mobile. No, we wouldn’t call it EDS according to these criteria,” which… fine with me now, because I know what that means. But I think… this is why I wanted to say that part. So I was like, “I’ll wait and see what she wrote in my chart.”
Nothing. There’s nothing in my chart. There’s no summary of that appointment at all. So. Now I’m like, “Cool. What do I say? How do I describe this?” One, a hypermobility syndrome isn’t anything, first of all. That’s just like you agreed that I’m hypermobile, which is helpful, which sometimes historically would be diagnosed as benign hypermobility, but that is kind of being debunked as a concept. And so then that was replaced, I think, by joint hypermobility syndrome, which has also been retired as a diagnosis. So I think that the only actual diagnosis that that could refer to is hypomobility spectrum disorder, but of course, nobody said that or wrote that down. And of course I also already had all of the context about the diagnostic crap to know that hypermobility spectrum disorder basically means, “Maybe the type of EDS that we’re looking for a genetic variant for, maybe something else that we’re also trying to identify, but we haven’t fully found the strains yet, but you’re in this family of problems basically.” And so I’ve been thinking a lot about… what does it mean to have a doctor tell you sort of. Does it confirm anything? Would it have been more affirming if she had been like,”Yes, you have hypermobile EDS.” And I don’t know cause obviously that wasn’t my experience, but it was confirmed. It was confirmed that I’m in the orbit of whatever planet we’re all orbiting together of like mast cell problems, dysautonomia, sometimes auto immunity, connective tissue disorder, but not in any way where… it’s not on my chart. My PCP might add it to my chart cause she does that. But not all doctors would.
It’s an exact example of the kind of medical magic that happens where there’s no paper trail. And so there’s no accountability. And so there’s no real plan, but she also did say, which I thought was helpful and more than a lot of doctors do in this situation, she was like, “Because the gene hasn’t been identified, we don’t have any targeted treatments and we don’t have any targeted treatments for any of the other types of EDS right now, anyway. So the main way to deal with either hypermobile EDS or any other type of hypermobility is find a physiatrist who can tell you how to make your joints… who can help you put your body back together.” And I was like, “Well, I just started PT for that.” So I’m already doing the one thing, but I think having a doctor tell you that it’s the thing… I don’t know.
There’s like… I feel like so much more of the process of diagnosis is getting the information and then internalizing the information so that you actually know… cause it rearranges how you interpret the feedback from your own body. And so I kind of… the way that I think about it now, which might not be universal or even true in the future, is that with self-diagnosis I’m like,”Ookay, I’ve been ruminating on this set of experiences for a long time. And I’ve been circling in around what is more precise language? What is a more precise understanding?” So that I can manage it better, ideally, but even if I can’t manage it better, understanding it better kind of does that automatically a little, I think. And so either you’re already circling that space where you think you know what’s going on and you go to a specialist and they’re like, “Yep.” And then you’re like, “Cool. I was right. I guess I’ll go back to all the emotional work of processing this,” or they’re like, “Nope.” And you’re like, “Were they correct?” Because sometimes they are. And sometimes they aren’t. And so maybe you’re back into self-diagnosis world. So that happens a lot with hypermobility. That doctor, just as much could have said, “You don’t meet the criteria for hypermobile EDS, so nothing is wrong with you.” And people get that a lot. They’ll be like, “No, you don’t… there’s nothing going on here.” And so you can think that that’s what’s going on and go to the doctor and have the doctor tell you it’s nothing. And then you have to leave and be like, “Is that true? Is the doctor correct? That my assessment was wrong,” this is going to get real double negative, “Or is the doctor wrong? And I need to find another doctor who can assess me more accurately.”
And I hate that that’s even a question, but these interviews have taught me that that is a very necessary question. And it’s not just getting a second opinion. It’s your life. So… and then the other outcome is that you go to a doctor, not knowing… without an inkling of what you have and they tell you, and then I feel like it’s… the process is probably really similar, but you’re like, “Okay, cool. I have a name and some language to learn about. And now I have to go and sit with my body and still internalize this information to see if it applies.” It’s… I dunno, the doctor’s role in this whole thing is interesting. Cause I was misdiagnosed with PCOS. I also talk about this in episode one. I was misdiagnosed with PCOS, and I didn’t… I wasn’t looking for it. I didn’t expect it. And she was like, “Yeah, this that’s what this is. You have it.” And I learned a ton about it and resolved the symptoms, not through the kind of treatment recommended for it and was like, “Well, I no longer meet these criteria. So what does that mean? Do I have it? I don’t know.” So that was a lot of anecdote to kind of get to the… more or less the present. And also circle back to your question around internal validity of diagnosis, sort of. Does that get at that?
Drew: [01:53:55] Yeah. And also, I don’t know if you would be able to speak to this because you mentioned being misdiagnosed, but I feel like PCOS is maybe a little bit more of a disease you can touch than EDS. You know, we have all of these… there’s this whole realm in medicine of mysterious illnesses. And I’ve heard a lot of stories on the pod of of people saying, “Oh, I was initially misdiagnosed with this mysterious illness, and then I got a second opinion. And now I’m being told that I have this mysterious illness and I identify that way.” And I’m also just curious about what goes into that and how people think… how people decide which doctor was right.
Brianne: [01:54:48] Yes. Yes.
Drew: [01:54:50] Because I’ve never… for my physical stuff I have yet to receive any diagnosis. So I’m curious, like if I receive a diagnosis of like, “Oh, you have fibromyalgia.” Like, “You have fibromyalgia and EDS,” which is sort of… that’s the self-diagnosis that I’m working with right now. I tell people that I have those things, and I feel pretty comfortable in it. I really am someone who just is very lucky to feel comfortable with a self-diagnosis, but, I’m curious, you know, if I get that diagnosis and then later end up seeing a different doctor and they’re like, “No, I think it’s this.” What that experience will be like. I don’t know. Just…
Brianne: [01:55:35] Yeah,
Drew: [01:55:36] It’s just something that I wish people talked about more.
Brianne: [01:55:39] Yeah, I think about that a lot. So one, at the beginning, when I first started the podcast, that was one of the major hurdles that I… maybe hurdles isn’t the right word, but things that was a problem. Because so much of chronic illness is siloed by diagnosis in a way that, when you’re not diagnosed yet, you’re like, “Okay, well, is this group friendly to self-diagnosis, if I have self-diagnosed?” Which they might not be. “And if they’re not friendly to self-diagnosis and/or I don’t have a self-diagnosis, there’s nowhere to go.” There’s no one to talk to. And then one of the weirder things with that is that people are misdiagnosed so often that… cause I, you know, I don’t know, I probably subscribed to the PCOS subreddit or something. It wasn’t my full identity at that time, but I was definitely like, “Okay, maybe this is the explanation. And so, this is a thing I’m going to talk to other people about it. I’m going to learn about it.” And then as it… I didn’t relate to anybody there because none of my symptoms were similar. It was a bad diagnosis for me. And so that part was clear, but it was like, “I’m gravitating out of that group but now I have no community around my health at all, which is not great.” Because it felt at the time, and so… I don’t know, like four or five years ago, this was probably 2015, that most con most communities relied on that. And so I also think that there’s an element that identifying with your diagnosis, not in the way where healthy people accuse us of doing that, but in the way that you’re talking about, identifying with your diagnosis is really encouraged within a lot of communities and within the medical system, because your diagnosis is your key to so many of those things.
Drew: [01:57:23] also I don’t know, you were talking about spaces, not knowing if a space is open to self-diagnosis, which is definitely a big issue, but also just something that isn’t even, I feel like on the radar is, is this space open to people who are like, I don’t, maybe this is one of the things that I am considering. I’m just sort of gently dipping my toes in because like, I said, I don’t have issues with self-diagnosis, but I know that that’s something that Margo has a lot of issues around. And I actually, I told him that I was going to be interviewing you and he was like, ask her about self-diagnosis and I was like, okay. Yeah. but it’s really hard for him because he’s like, “I don’t know what I have. I could very well have this thing. I could very well have this other thing.” So it’s not even, “Is this group open to like, self-diagnosis?” It’s like, “Can I be in this group if I have some symptoms that I can identify, that you also have?” And I just wish that… because I feel like probably if a group is open to a self-diagnosis, they would be open to also that other, more nebulous experience of identifying with having that illness. But, I just wish that that was something that was made explicit more often, or at all.
Brianne: [01:59:01] Yeah, totally agree. Yeah. And because kind of in the interim period, so when I got really sick in 2017, which was when I was in a moldy house in San Francisco. That was when I first became just completely bed-bound and stopped working. And I was in… I was completely in that space. I didn’t know what was going on. I had no idea. So I was reading a little bit about chronic fatigue syndrome, but I didn’t have enough context for ME. I think that’s when I started to learn about that whole… everything about chronic… CFS/ME, and it was like, “Okay. Some of this stuff kind of relates to me, but it’s not… that’s not my only thing. I kind of… I relate to some of what some people are talking about, but I also feel like an imposter.” I was in… I think I joined some Facebook groups that were intentionally broad. So Facebook groups that were obviously designed for chronic illness and they had like seven diagnoses in the name. So it would be like “CFS, ME, fibro, Lyme, EDS, Chiari,” and I was like, “Great. They don’t care who’s in this group. They’re just talking about it. That seems fine.” Compared to some really specific ones, you know, like I’m in a small fiber neuropathy one right now that’s obviously targeted… people join all the time who actually haven’t been tested for it, which I don’t care about, but I would have never done that. And that’s me. So…
Drew: [02:00:22] Yeah. And that can be really scary.
Brianne: [02:00:23] Yeah. And a lot of them, there’ll be screening questions, especially with Facebook groups cause they can do that. And so… and I’ve been rejected from groups before, too when… cause I was honest and I was like, “Yeah, doctors have been like, ‘You probably have this, but we won’t diagnose you.'” And they’re like, “Sorry, formal diagnoses only.” And I was like, “Cool, cool, cool, cool. Thank you. That’s not helpful.” So that was a weird time, and I think this is when I started using Twitter for chronic illness, because I found my Twitter… first of all, my Twitter account is not my first Twitter account, and second of all this Twitter account, I used to probably talk more about work-related things. It wasn’t professional, but it wasn’t like, “Let me tell you what my night sweats everyday,” kind of thing. And so that was when I was like, “I’m not working anymore. I’m not looking for work because I literally can’t. I’m going to just tweet more about this stuff.” And I was still… I remember not knowing how to do that either because even on Twitter, which is open in… you can follow anybody, you can talk about whatever you want. It’s, un-moderated, effectively. I was like, “I don’t know how to name any of these experiences. I don’t know how to describe it. I’m still not convinced that I couldn’t be just getting my act together and working/ I’m still not convinced that this isn’t something that I’m just letting myself do, because I don’t know why.” And so I remember I was like, “Maybe…”and at that point I thought, “Maybe it’s tick-borne,” because that’s what was coming up in some of my bloodwork. So I kept changing my Twitter bio all the time. Cause I was like, “I feel like I have to say something.” Because that’s like… that’s the process is that you’re tweeting about it, and people are like, “Do I relate to this person? Let me go to their bio to learn more.” And it was like, “If I don’t say anything, then… how do I relate to people without this fundamental thing? That seems required within this community. And I don’t know why.”
And I think at that time I was a lot less aware of self-diagnosis as a movement. But I also really relate to what you just said about Margo, which is I didn’t… even if I did 100% feel comfortable proclaiming it something, just nothing felt like it really fit. And now looking back, I’m like, “That’s because there was more than one thing going on, and your doctors weren’t looking for any of those things.” All that was overlapping, but… so I would say that this is… that’s important. The way that I have talked about everything about chronic illness on Twitter the entire time, so since I started talking about just my own experiences as a sick person in 2017, I have been really intentional to try not to use diagnostic language, because of that, because I was so hyper-aware of how that informed my relationships to other conversations in other communities. So I was like, “I don’t know. I don’t want to empathize with people when I see them talking about something because I don’t have a diagnosis because I don’t want them to be like, ‘well, who are you? Yours isn’t as…'” none of that kind of stuff, which some people do, it’s real that that happens.
And it’s also true that… around the same time, maybe it was later, that I saw the illness fakers on Reddit for the first time, was also before I was diagnosed. I think I must’ve seen it by… I had seen it by 2018 because I had seen it by the time I started the podcast. Cause I felt hyper-aware of it when I started the podcast being like, “Okay, I’m going to ask people to talk to me about the inconsistencies in their own history, in an environment where having inconsistencies in your health history can open you up to online harassment.” So I think that also really informed it cause I was like, “I don’t really feel comfortable cause I don’t know what to call it, and I’m really aware that there aren’t places to talk about all of this stuff, if you’re not leading with your diagnosis. And so that’s pretty messed up. Plus there’s this other environment where… that’s actively trying to scare people from admitting to having symptoms before diagnosis or whatever.” And I think… because I read through it a couple times just to be like, “What is going on here?” And now, I haven’t looked at it a long time, but the people who were on it at the time that I looked at it and the things that they were calling out as consistencies about their stories. Now, I’m like, “Those are really consistent stories.” Those stories are consistent with every other story that I’ve ever heard. It is so normal to think that you have one thing and find out you have another thing. All of this is so normal, and the culture at large and a few really specific mean places on the internet lead us to believe that that’s not normal.
Plus, a lot of chronic illness communities that rely on diagnosis…. basically you lose your entire network if you find out that you’ve been misdiagnosed, so that’s not helping us either. There’s all of this stuff. And, the hegemony of diagnosis let’s call it. So all of that was happening, and I don’t have… I mean, I don’t know. It depends. Via self-diagnosis, I am now starting to feel, and I have been for the last like six months, maybe… be like, “Okay. Even though I’ve known about hypermobility in EDS now for a couple of years, I’m actually starting to see the ways that my body might fit into those patterns that I know about, and that’s starting to make sense to me. And that gives me tools for making decisions about my future, which is what’s most important.” Like starting PT and trying to plan, “What can I reasonably anticipate that my body will need in the next year or the next five years?” Probably can’t plan longer than that, but I am starting to feel like I have the right information for that, which is incredible. And so internally, I’m now being like, “This feels pretty validated. I understand it. I feel comfortable talking about it and naming my symptoms in this way,” but medically, I’m not like… I wouldn’t walk into a doctor’s appointment and be like, “I have EDS. Don’t worry about it.” I still… and even to somebody who is outside of the chronic illness community, I’m like, “Oh God, I could not explain this to them.” Depending on context, I would say different things, but if I were dealing with someone who I knew understood this a little bit and was a pedant about it, I would just say, “I have hypermobility spectrum disorder.” If I was dealing with someone who I just want to understand, I would be like, “I have a genetic connective tissue disorder.” It’s messy, but it’s been really important to me this whole time to create conversation and resources that are diagnosis-agnostic because of that, because they don’t exist. It’s not a world that we live in, so I had a lot to say about that. Thanks for asking.
Drew: [02:06:51] I have another question which will maybe be less fruitful because it’s more specific.
Brianne: [02:06:56] That’s okay!
Drew: [02:06:57] Um, And it’s sort of tying back to something that you said, and that you mentioned in your TED talk, having at one point a visible tremor. And I wanted to ask about that because I have pretty much had a tremor since I was like… I want to say in the second grade, and then you mentioned your dad having alien hand syndrome, so I just wanted to ask what that’s like for you, and if you have any theories, you know.
Brianne: [02:07:25] Yeah, so there’s a couple of threads around that because when I had a really kind of full body tremor, non-essential tremor, I guess, was when I was living at the old house was when it was really kind of at its worst. And most I had constantly been like, “is this really happening? Am I choosing this?” The questions that I always have about involuntary movement of like, “Am I imagining this involuntary movement? Am I choosing to do it and then gaslighting myself about it for some reason?” Those are my first assumptions, and then one of my… I hugged one of my friends when I was really exhausted and she was like, “You’re shaking.” And I was like, “Oh, I am? I am? Are you sure?” So I have a mixed relationship with it because it started at a time when I was still really not convinced that I had a physical problem. And I was still really trying to fix my character out of this… whatever was going on, and so it, at the time, it was one of the first kind of external observable signs that something atypical was going on and it started pretty late for me. So that’s when I was like 29, I think. and so it was frustrating, but also… reassuring is the wrong word, but there was something to it that was like, “Okay, this is an indication.” And so I think now based on timing and everything, I’m like, “That was really… that was a part of the mold thing.” So I think for me, that manifestation might be a histamine reaction or tied into that.
But then I have also the twitching, which is different, possibly fasciculations. I haven’t looked up the pronunciation on that. It’s got a lot of consonants as a word. And those are also involuntary movement. They’re a little bit closer to what the alien hand syndrome was like, because I do have kind of involuntary arm movements or involuntary full body movements. Mostly those, mostly arm or body, depending. And they track more with fatigue for me. And so if I push too hard, that’ll start happening. And so I don’t… the other thing that I haven’t really talked about is I don’t know how to label my fatigue yet. I don’t know… because I’ve been focusing on one thing at a time, like, “What’s the biggest fire?” I don’t know if an ME diagnosis is also reasonable for me, because I know that that level of dyskinesia, of involuntary movement is a hallmark of an ME crash. But then I also know that the symptoms of ME can be caused by structural problems related to connective tissue disorder, and so it’s kind of like… there’s a little bit of diagnostic ambiguity about who fits into what… under what umbrella or whether these umbrellas are distinct at all, basically. So I’ve been looking at it in that direction. Sometimes magnesium helps. That’s the biggest thing that I hear from other people. I found that to be true too, but I have no idea… I mean, I mentioned it to my neurologist and he was like, “Oh yeah, that sounds inconvenient.” You know? Like, Cool! Sounds like you need to sleep more if sleep helps.”
Drew: [02:10:41] Yeah. I haven’t talked to any doctors about it because I’m scared that I will get that response, but also I do have anxiety, that is a thing that I experience, and I would never mention this to a doctor, but it does get worse when I’m anxious, but it is just also baseline there all the time. So I don’t know. It’s hard because also my pain gets worse when I am more depressed or when I’m having a borderline episode. So it’s… I dunno, it’s hard because I feel like I can’t talk about the relationship between my mental health and my physical health to a doctor, but also that is just such a huge part of my experience.
Brianne: [02:11:43] Yeah, and I… cause my, when I say fatigue, one thing that I’ve also started to interpret… the way that I talk about my body is so different than it was two years ago, because I’ve just spent two years being forced to pay attention to every detail, but I have three different types of fatigue, which is that I have physical fatigue, and then I have mental fatigue, and then I have emotional fatigue because those apparently all draw on related, but isolated energy reserves. And so that also means that if I get into conflict with somebody, I get really twitchy, which is incredibly derailing… to be like, “Just ignore the twitching. I want to continue the serious conversation that we’re having. Please don’t pay attention to the involuntary movement.” And then it also happens just from physical exertion, so if I either haven’t gotten enough sleep or I try to do something that my body isn’t ready to do, then I will also do it. So it’s hard cause I feel like… something that I will do as a slight of hand to avoid that problem… which also means, contributing to that problem in a way, but… is talk about the physical part without talking about the emotional part, and I have been able to do that. But it’s the same fatigue, and it’s the same nervous system, you know? It doesn’t… they’re not magically separable, and it’s so frustrating cause I agree with you, I wouldn’t go into a doctor and be like, “When I get into an a really emotional conversation, I get twitchy. What do you think that’s about?” I think they’d be like, “That sounds like textbook conversion disorder.” And I’d be like, “Let’s talk about that because trauma can convert into physical symptoms. However, it is not my only trigger, so that doesn’t make sense here.”
Drew: [02:13:30] Yeah. If I went to a doctor and was like, “When I don’t talk to my partner about something that is worrying me, I get stabbing pains in my torso.
Brianne: [02:13:45] Yeah.
Drew: [02:13:45] help? Because they would just be like, Oh, you need to see a therapist and also get better at communication. And like, yes, I do need to do both of those things. I am doing both of those things, but I also get stabbing pains in my torso, when I’m tired or just sometimes for fun.
Brianne: [02:14:07] Yeah. One of the weirdest things to me about this construction of tending to somaticize everything, is that it is true with chronic conditions that eliminating triggers is going to be a really big part of symptom management. I feel like we all kind of learn that unfortunately, as much as you are able to do, because it can be really difficult, but what’s absolutely wild to me is that eliminating triggers isn’t a thing that you can do if you don’t know what’s being triggered. When it’s like, “Okay, well I have three different examples that all create the same symptom. What is the symptom? Tell me, because I won’t be able… I won’t know what levers to pull otherwise.” And then somehow at the same time, like many doctors are so prepared to be like, “Cool, go to a therapist to manage your triggers. We don’t need to know what it’s causing.” But they will deride any other triggers. So many people find that they have dietary triggers, like with mast cell stuff or that they have environmental triggers. And if you’re like, “Oh, every time I walk into my bedroom, I get a headache.” They’d be like, “Hmm, sounds like you should see a therapist about your aversion to your bedroom.” Not like, “Sounds like there might be something in that environment that you should deal with because trigger management is important.” They only want to talk about psychological trigger management and never talk about anything else. That’s at play in this…
Drew: [02:15:32] Yeah. Or a doctor would say, maybe, “It sounds like you need to move,” but if you’re not in a financial situation where you can move, like, “Okay. Move into my living room?” I can’t just avoid a room of my house.
Brianne: [02:15:51] Yeah. Like, “What is it so that I can do something?” Cause I’ve been thinking a lot now, too, that I’m like, “Oh, maybe this whole fucking framework is hypermobility, mast cell, and then dysautonomia, which is kind of probably downstream from those other two things.” If that’s been the framework the whole time, this is why we’ve never known what was going on, one. So every test that I ever had done when I was a kid and while I was growing up and I glossed over a lot of iron checks or whatever, for fatigue, but this is the reason that none of those came up with anything. But it’s also the reason that none of the interventions that I tried did anything. I’ve been put on so many diets and all of this other intervention stuff, and it didn’t do anything cause it wasn’t targeting the right thing. Like, ahhhh. So. Yeah, I have a lot of screams about that. So do you have any other questions at this point at this stage?
Drew: [02:16:45] No.
Brianne: [02:16:45] We’ve been talking for a long time, and I’ve been rambling a lot, so it’s okay if you don’t. Okay. I have a couple of like wind down thoughts too. And are you okay now that we’re this long into the conversation and we’re both sitting upright, energy wise? Okay. Okay. So then, the other impact of this crash for me has been that I have way more community and way more community knowledge than I had like two years ago or three years ago, and so I’ve also been doing a lot of my recovery from that perspective. And so I was like, “Okay, I don’t know. I don’t… doctors don’t really have anything to offer me right now.” I know that. I have a list of a couple of things that I might try. I want to try a low dose naltrexone at some point, which helps a lot of people with fatigue and related symptoms. So it might help me, but it’s not like going out and getting a formal EDS diagnosis would open any new doors. Literally nothing would be different. I’m pretty much on my own. So I have started doing more at home symptom management based on that. After this crash in April, I started taking a bunch of anti-histamines. So I have H1 blockers, H2 blockers. I bought quercetin. I bought nasal cromolyn, and I’ve been taking it since then. I honestly don’t know if it’s helping. But I’m waiting to stabilize to try taking them out because I have been improving. I might’ve been improving anyway.
So I’ve been looking at that more directly, and that’s actually made it more obvious to me that I have different kinds of fatigue. I talked about like bee brain. That’s something that I did not identify until this year and in this crash cause most days I’m like,”Okay, I know what tired feels like, but for me in my body on a low energy day, I can still read a romance novel on my Kindle.” That’s my one freebie. And a couple of times I would have days where I couldn’t do that cause I couldn’t focus and I wanted to close my eyes and I was like, “This isn’t my normal fatigue. This is different.” And I took the Benadryl, and it went away and I was like, “This is how a histamine reaction feels in my brain.” So that was new, but that was how my brain felt the entire time I lived in the mold house, and I didn’t have the tools to differentiate. And so I’ve also been like, “Okay, this time I know about pacing.” And I had a Fitbit that I got a couple of years ago, for heart rate monitoring for POTS, and it died right around this time cause it was old. So I was like, “Okay, I’m gonna use my stimulus money on a couple of things to make my life work better.” I’ve been so averse… I am very averse to spending money on literally anything, that’s another one of my brain gremlins. It has a hard time justifying spending money on this kind of stuff. Like, “Wait till you’re better. Spend money on other things. Don’t assume you’re going to stay sick and spend money that I
Drew: [02:19:29] bought this back brace recently that I had been debating whether or not I should buy for literally months, and until Margo was like, “Hey, have you considered getting an SI brace?” I was like,”Yeah.”
Brianne: [02:19:45] “I’ve considered it it a lot…”
Drew: [02:19:48] so why haven’t you done it?” And I was like, “Nervous!”
Brianne: [02:19:54] Yeah. Mine’s like…. I… and Adam doesn’t have any of… scarcity wiring is what I call it now. And so sometimes I’ll be looking at something, and I’ll look at it for weeks and I’ll be like, “Oh, should I buy?” And he’ll be like, “How much is it?” And I’m wearing a shoulder brace right now that I bought online, and it was $15. And I’ll be like, “It’s $15.” And he’ll be like, “How long have you been thinking about this?” And I’ll be like, “Hmm, like three months.” And he’ll be like, “Buy it right now.” Obviously if I were constantly buying $15 things every day, that might be an issue, but waffling that much on something that is not super expensive that over the course of the three months, I’ve definitely been able to afford is not… who is that serving?
Drew: [02:20:38] Yeah.
Brianne: [02:20:40] So, yeah, it’s hard. And this is the year. So I got a couple… I got a shoulder brace, I bought KT tape, after my shoulder dislocated, and that really is great actually, except that I react to it. So that’s its own thing.
Drew: [02:20:52] Oh no!
Brianne: [02:20:53] But… so now, I have my… I’ve been putting Pepto-Bismol on my skin underneath it because some people recommended it as a surface barrier. So just my whole life is using things off-label right now. And then I also got a giant water bottle, which I talked about in your interview, which will be the next episode because it’s like half a gallon, somebody on Twitter recommended it and now… it’s great. I drink over a gallon of water a day, I learned. I was already doing that, and now I can measure it. And then I got an Oura… well, two things. I’ll talk about that because I already started, I got an Oura Ring, which is like, a fitness tracker that you wear on your finger. So it’s a large ring. It’s larger than my wedding ring, and I have a large wedding ring. And it has sensors internally. So it monitors a lot of the same stuff as a Fitbit, I think it was like $300, which is expensive, and which I also waffled over for like eight months. Adam was like, “You know, I think maybe this will really make your life better. And I know it’s expensive, but I think that it’s gonna make your life better enough that it will be worth it.” And so it tracks heart rate, heart rate variability, and it does sleep monitoring stuff. And heart rate variability is one of the features that Fitbit can’t do. I think Garmin watches or the other one that does it, and it’s anecdotally, according to quite a few other people, a helpful tool for pacing, because basically what your heart does while you’re sleeping tells you how much you’ve recovered, which will give you kind of a good idea of how many spoons you have to switch metaphors.
So the main problem with the spoon theory…. which I guess if anyone’s listening, who doesn’t know what that is, which is very possible, it’s a blog post that compares lupus specifically, but chronic illness in general and energy limitation to using spoons as an energy unit. So taking a shower is a spoon and yeah, getting on the bus is a spoon, and it kind of constructs energy limitation for healthy people as a blog post. And it has become a vernacular. A lot of people talk about spoons or identify as spoonies. And one of the criticisms of the spoon theory from a lot of people is they’re like, “Oh, but she talks about how she tries to save a spoon,” which is her kind of talking about pacing, I think. And they’re like, “I can’t predict my energy at all.” I didn’t relate to it because I wake up at any given place on it every day, and one of the things about the ring that has actually been helpful so far… so I’ve had it for about so two months, is that it turns out that, for me, that data, the sleep data has been very predictive of how my dysautonomia and orthostatic intolerance will be. So my relationship to my body is pretty busted for all the reasons that I’ve already described, so I’m very bad at assessing how much it is safe to push myself. If I sleep really poorly and I wake up with swollen lymph nodes, then I’m like, “Cool. Don’t do anything today.” But if I don’t wake up like that, I have no idea.
And so there’ve been… before I bought the ring, one of the turning points was that I started making my own coffee again in the morning, a couple of months ago, after like four months in bed. And one morning that was a mistake. And it just ended with me twitching on the kitchen floor, and I think I almost smashed the carafe of coffee on my lap. And I yelped when that happened. I was like, “AHH!” and, Adam heard that, although he was asleep. He just heard a scream from the kitchen and came down… living with me is really fun. I just make a lot of terror noises on… not on purpose. So that woke him up, and he came down and I was lying on the kitchen floor. I think I was crying at that point. Cause it sucks. It sucks so much when you don’t estimate correctly. And so what the ring does is it basically can tell me, “Don’t make coffee today. You are not prepared for it.” And so it’s turned out to be a hugely valuable pacing tool. That, again, it’s more expensive than some of the other wearables, but at this point I’d recommend it to people who have the problem that I have, which is that you don’t know where your barriers… where your walls are at all. It has really helped me kind of stabilize my routine and my schedule and my output. So that’s been cool. And that, I think, is what’s creating the possibility to start doing a few things again.
Drew: [02:25:02] Sounds like something that I will consider buying over the next six months. And then maybe pressure myself into buying.
Brianne: [02:25:12] Yeah. Just think about it for a long time cause that’s what I did, and I’m very pleased with it, which… cause I wasn’t sure. I was like, “Am I going to regret it?” I’ve had a Fitbit for a long time. I find the Fitbit helpful. I mean, I found the Fitbit helpful because the spot checks on my heart rate helped me be like, “Oh, the reason that you feel bad right now is because your heart rate is 140.” And I wasn’t good at that before, which you think that one would be, but I guess if you grow up being told to ignore that input, then you will. And then the other thing… the other change is that I finally got a cane, so I had a cane when I was in the mold house and recovering from mold, but it literally happened that that whole instance was at the same time as my mother-in-law had knee surgery. And I just… or right after. So I just took her cane. I was like, “I need a cane. There’s a cane here.” And it was a collapsible HurryCane. It was great. It was too short for me, but I used it anyway. And then when I didn’t need it anymore on that cycle, I returned it, and then I didn’t need one for like a year and a half. And then I started to need one again. And I was like, “You know, I think evidence suggests that this is going to be a pattern perhaps forever, and that maybe I could just get a cane that I love instead of boring canes that I hate.” And I’m really tall, so I started looking for canes that I liked, and I didn’t really like any, or I found a couple that I kind of liked, but… I went to architecture school, as I said earlier, which means that I have just really specific and pretentious taste. It’s not avoidable. It’s just fact. So I couldn’t really find any that I liked, and the couple that I found that I liked didn’t come tall enough for me. So we made a cane. And so I sketched it out, and then Adam prototyped it for me. And so I made a cane for myself. So now I have a cane which I’m really excited about.
Drew: [02:26:54] Oh, I love that.
Brianne: [02:26:56] Yeah. It was fun. Cause Adam is a woodworker, he has a shop out back. Obviously this is not a normal circumstance for somebody to be like, “How can I get a mobility aid?” But we were like, “Wait, could we just make one exactly to how we want?” So basically in the middle of this crash, I’ve just been trying to do as much as possible to actually accommodate my body because I feel like I’m actually seeing it clearly, maybe for the first time, and that’s pretty wild. And the one other thing is something that I tweeted about yesterday or this week, which is that I just got a tablet and a gooseneck because my computer is also over five years old. And this is my power cord, it’s completely deteriorated to nothing.
Drew: [02:27:40] Oh no.
Brianne: [02:27:41] So it was like, “I need to get a new device, no matter what. My computer is very much on its last legs. How could I also do that in a way that will accommodate what my body actually needs?” I was like, “What if I get a tablet on a gooseneck and then a keyboard and then I can lie down?” And so I just did that. I also thought about that for like four months and I just did that like last week. So it’s already amazing. I’m very excited about it.
Drew: [02:28:05] Yeah I saw your excited tweets about it.
Brianne: [02:28:08] Yeah, I like… just lying down, typing on my lap. It’s great. So I think that was a very long, very long summary of everything. And then my updates from this year. Is there anything that you think that I missed?
Drew: [02:28:23] Mm. Not that comes to mind.
Brianne: [02:28:26] You’re like, “That was very thorough. Thank you.” Okay. Well thank… actually, no, you know what? I think we should still say on here, cause this is also going to be the first new episode.
Drew: [02:28:37] Yes.
Brianne: [02:28:37] So also, new episodes are coming out, which I’m really excited about. And I feel like the podcast is going to be… not really different in any way, but it’s evolved a lot compared to the first… say 50 or whatever, because I know so much more and the community has changed a lot. There’s a hashtag now that a lot of people use, that is people’s entry point into the podcast actually, which is not on purpose, but has worked that way. So I also feel like things are just… the vibe is shifting. Do you know what I mean
Drew: [02:29:08] Yeah. I mean, I found you through the hashtag, but…
Brianne: [02:29:11] Yeah, but you’ve listened to the old podcast.
Drew: [02:29:13] Yeah yeah yeah.
Brianne: [02:29:14] So there’s that, and then now I’m really excited that I have you to help me with the podcast.
Drew: [02:29:19] Yay!
Brianne: [02:29:21] So I also was just going to tell people what to expect, even though we don’t fully know what to expect yet. But… cause this is also part of that adaptation basically is the podcast has been on a ridiculously slow schedule all year because I’ve been having ongoing health stuff all year. And I just can’t do the computer. Video chat… group video chat as a no-go for my brain, but video chat is much easier than writing for me right now. However brains are. So I was like, “I need some help, but I don’t know how to find help for this because I know a lot of people who make podcasts will outsource” so like, I don’t know, go on Fiverr or Upwork or something, and look for somebody who can do the individual tasks for the cheapest amount of money, I guess. And that is the goal. And I was like, “I don’t think that that method will work for me,” and one of the reasons is that I still have to do a lot of administration in between because that’s the cost of finding cheap labor. And if I could do the administration, I’d be doing it already.
And second of all, and more importantly, I don’t think that I could get somebody who is not chronically ill to edit this podcast, I just don’t. Like, I don’t trust anybody else’s judgment to interact with it at all. Or interpret it accurately or know where there… just literally everything about it. I was thinking about that for a couple of weeks, at least. I was like, “Okay, I accept that I need help. I am used to doing everything by myself because that’s just… I’m not… because collaborating is hard when your body isn’t good at deadlines. And what am I going to do about that?” And we still don’t totally know how it’s going to operate, I guess. But when I talked about it and you were like, “Can I help you?” And I was like, “Oh my God, I didn’t even have this question fully formed, but I think that you can!” Because the main problem that I have is that I can’t… I’m not going to be like, “Hey, person from Upwork who I’m hiring for $12 an hour, will you listen to 70 episodes of this podcast to get ready?” Not that anyone has to listen to all of them, but if you’re not chronically ill, you would, so like, “Listen to all of them and also my Ted talk and also some of my writing, just so that you get the vibe for the very occasional… it won’t matter most of the time, but it will matter.” So that’s where I’m at. And so now we’re going to try to figure out how to collaborate on… with two bodies that are on their own timelines, basically.
Drew: [02:32:01] Yes.
Brianne: [02:32:02] And so one, so I’ve been, promoting the Patreon more because… for budget to make this happen. And then number two, we just don’t know what the schedule will be yet. Cause I want to tell people what to expect, but we can’t, but expect more podcasts because I’ve done three more interviews already. So there’s at least three more coming after this, and probably more after that cause I have seven on my calendar, so… I don’t know. I actually… that was me talking. I don’t know… if you want to contribute to that you can, but possibly I just said everything that needed to happen.
Drew: [02:32:38] My only contribution is that I just rolled up my spine and several of my vertebrae cracked.
Brianne: [02:32:44] Nice. Classic body.
Drew: [02:32:46] Yes, it was very good.
Brianne: [02:32:50] Yeah. I feel like once we realized that cracks might mean something it’s so much more horrifying.
Drew: [02:32:56] Yeah.
Brianne: [02:32:58] Recently, I… after I started to be like, “Oh, is this hypermobility?” I rolled over in bed or something, and I think my SI joint subluxed and Adam was lying… we were reading, and he was lying in such a way that his head was closer to it. And he was like, “There was a suction noise before that crack.” I was like, “Oh yeah, that’s not benign, is it? That’s really the joint moving around.”
Drew: [02:33:20] Yeah, no, but this was a good crack. I think I had subluxed something, and now it is fixed.
Brianne: [02:33:27] The kind where it goes back in.
Drew: [02:33:29] Yeah.
Brianne: [02:33:30] So… oh, and one other weird side effect of… we haven’t actually talked about this… I guess if you listen to the podcast and you’re not on Twitter, I’m sorry for how confusing some of that may be, but basically while the podcast has been on semi hiatus, a lot of conversations have still been happening, mostly on Twitter because that’s where I spend all of my time when I’m asleep, I’m half asleep, fatigued. And so we’ve been using, a hashtag called NEISVoid, which is short for no end in sight. It’s alongside the podcast cause it was never… it’s not intended to be promotional. It was never intended to be promotional. Although it kind of works that way, weirdly. I was just like, “I don’t know what to call this and I don’t know how to make up a hashtag because every hashtag ever has been used. So if I just try to use an expression, it will be a mess. It needs to be distinct.” And this was in March, too, so it was in the middle of adrenaline time. And I was like, “Let’s just go with this. If nobody uses it, it’s not a big deal.” And then people are using it. So now that’s what it’s called forever. So if you’re not on Twitter or if you are on Twitter, but you don’t follow me and you haven’t seen this, and you’re looking for a lot of people talking about chronic illness stuff all the time. That’s what it is. And I think everybody in this first round of interviews are mostly people who have been active on Twitter so are kind of familiar with that. So that’s one way that I think… not that the tone will shift, but just that’s a kind of context for newer conversations.
Drew: [02:34:53] I don’t know if I have heard you describe yourself this way, or if it’s just something that I made up, but I sort of think of you as like a story midwife. And I just love how the podcast has become a sort of smaller way for you to do your story midwifery.
Brianne: [02:35:14] Yes, I have not said that, but thank you. And I love it. And a version of it that I have heard is that one of my friends told me that I was like a human sleepover. She was like, “You just go and you’re like, guess what? We’re having a 2:00 AM sleep over conversation now. I don’t care that it’s 3:00 PM.” She’s like, “I don’t know, but you figured it out. You’ve been cultivating this for 10 to 15 years now and it’s becoming more…” not, she wasn’t saying it in a mean way. She was saying it in a really nice way, and I’m just trying not to exaggerate it, but I was like, “What a time to have a vibe.” So… cause yeah, and in that way, I mean, Stories We Don’t Tell, and there’s a book for that. If anybody really wants to get into very traumatic individual stories that have been compiled together and I love it. It is very close to my heart. It’s also a lot, and I’m very grateful to have had that experience cause I feel like that meant that when I… not when I came to chronic illness, since I’ve been sick my whole life, but when I came to no longer being able to live in denial, I guess, after being invisibly accommodated for most of my life, it was like, “Okay, don’t worry. I am so ready to have a lot of conversations that would bum other people out because it does not bum me out.” And that’s what the void is like, for sure. Yeah. And then the other thing I think, because I’ve been tweeting about hypermobility so much is I think that a lot of the next few episodes are all hypermobility. Cause I’ve recorded three, like I said, and all three of them were hypermobile. One of them is you, so you know that. So you’re hypermobile, but also I interviewed two other hypermobile people. But I think there’s some other… there’s some other stories on my calendar, so they’ll get mixed up, but you know, people can just know that if the podcast seems like it is more EDS focused or more Twitter focused. That’s not intentional. That’s a by-product of the year that I’ve had. Okay. I think that’s really it this time, after two false endings.
Drew: [02:37:09] Yes!
Brianne: [02:37:11] Thank you for talking to me about me for so long, Drew.
[guitar riff]
Thank you for listening to episode 70 of No End In Sight.
You can find me on Twitter and Instagram at @bennessb and you can find Drew on Twitter at @fibrofuckboy. And this a list, you can find a space to talk about your own experiences with chronic illness using #NEISVoid on Twitter and also a little bit on Instagram.
And don’t forget that you can sign up to support the show financially over at patreon.com/noendinsight. Or if you wanna support the show but you don’t have a few bucks to spare I’d be just as grateful if you left a podcast review on apple podcasts or itunes.
Thanks for listening.