Krystal Vasquez talks hypermobility, mast cells, and CSF leaks.
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Transcript
Brianne: I’m Brianne Benness, and this is No End In Sight, a podcast about life with chronic illness.
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Drew: Hey, this is associate producer Drew Maar. Before we get started, here’s a quick reminder that you can find No End In Sight on Patreon, which is a really simple way for listeners to subscribe to support the show financially on a monthly basis. So if you’ve been enjoying the podcast and you also have a couple bucks to spare, we’d be so so grateful if you’d sign up as a patron at patreon.com/noendinsight. Today we’ll be talking with Krystal Vasquez about hypermobility, mast cells, and CSF leaks. A couple of content notes for this episode: There’s a mention of food tracking around 32 minutes in, and COVID is mentioned a couple of times throughout the episode with a discussion surrounding infection risk at the 45 minute mark. Before we start, here’s our 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.
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Brianne: So I like to start just by asking people, how was your health as a kid?
Krystal: So I always thought that I was like, a super healthy child. And all doctors were always like, “Oh, she’s so healthy.” And like, “It’s fine.” It wasn’t necessarily fine. It wasn’t necessarily like, anything that bothered me on a day-to-day basis, but like, having like, lots of headaches as a teenager, my knees always hurt with weather changes, and my mom usually pushed it off as like, “Oh, that happens to everyone.” And I’m like, “Does it though?”
Brianne: Yeah. “Really?” But like, perhaps it happened to your mom.
Krystal: Right. Like, it was probably normal for her, but it wasn’t normal for like, the general public. I also had a lot of like, weird presyncope spells, which they usually say like, you get as a teenage girl for some reason. But it didn’t really go away. It’s gotten to the point where I… so I never actually faint, but I can… when my vision blacks out, I can still like, migrate to my next destination pretty well. And I feel like that’s a skill.
Brianne: Yeah. There’s like a level of stasis that you can find where you’re like, “Okay, well, my eyes aren’t working anymore, but my legs are still… like, my arms and legs are still responding. So if I can just get myself to a safe location, I don’t need to see for the next…” But it’s like, you’re right. It is a little bit of a gamble.
Krystal: Yeah, but like, I thought that was normal. Like, people just do that and I’m like, “Oh, it’s not.” Also like, sitting in the shower isn’t a normal thing. I’ve sat in the shower, like the floor of the shower since I was little. Like, showers are exhausting if I don’t sit.
Brianne: Right. Yeah. And they are. But like, as a kid, especially stuff like bathing, I think, where like, you probably only know your immediate family’s habits and like, maybe somehow a couple other close friends or something. We’re not all talking about our shower postures every day, like at public school or something. You just wouldn’t even know.
Krystal: Yeah I’m just like, “Why wouldn’t people sit in the shower? It’s so much more comfortable and easy.”
Brianne: “Don’t they get dizzy?”
Krystal: “Don’t they get tired? Like, isn’t the water like, too hot for them?” Yeah. Those things.
Brianne: Yeah. Yeah. So you had like, what we would maybe say like, idiosyncrasies that at the time you didn’t know were perhaps unusual or meaningful, sounds like.
Krystal: Right. And I also sit really weird. So you can’t see it now, but I’m like in a ball.
Brianne: Yeah, me too. I’m like, this is my knee right here at the bottom of the camera.
Krystal: Yeah. So I’ve always sat really oddly, I guess. Which, I don’t know, people just thought, “Oh, Krystal’s just weird. It’s fine.” But I’m learning that that’s probably to help my hips feel comfortable and to help my body stay upright.
Brianne: Yeah. Yeah. I’ve been learning so much about that, the last few weeks even. And it’s like, “Oh, people who may or may not be a hypermobile, like, our postures are really going to be correcting differently.” And like, some of these habits might anecdotally turn out to be really big patterns and people with this body stuff. Tell me if you relate to this or not, but I feel like being a fidgety sitter when you’re younger, people just think that you’re annoying. They’re like, “Why can’t you just sit still? And it’s never like, “Oh, I want to annoy everybody by moving my feet a lot to keep circulation.”
Krystal: I’m just uncomfortable. Like, I wrap my legs around chair legs. I’ve crossed my legs like, two times sitting cross legged or whatever. Yeah.
Brianne: I noticed yesterday that I was like, jiggling my calf a lot, just like, tensing and un-tensing. And I think my husband asked me about it, and I was like, “Oh, I do that all the time. I just never…” If someone had asked me and I wasn’t doing it, I would’ve never thought that I did that, but he was like, “What are you doing right now? Is that on purpose?” It’s like, “Oh yeah, I think I do that all the time.” And now I’m like, “And I bet it’s for circulation.” I just didn’t ever realize that it made me feel better.
Krystal: Right. My hips are probably one of the most hypermobile parts of my body for whatever reason, and I’ve definitely noticed that that’s the area that hurts if I’m sitting like, properly. So I’m just like, “Oh, bodies are weird.”
Brianne: Yeah, yeah. And chairs are weird.
Krystal: Chairs are weird.
Brianne: But so as a kid, these are all other kinds of signs that are starting to pile up. And was there a point when you were younger, when anything started to look suspicious or kind of changed or did that trend last through school, kind of?
Krystal: It lasted for a while. The first major thing that had ever happened to me was in college. I was training for a 5k and so running on the street and cement. And suddenly I got this really like, painful feeling in my pelvis. And so I went to the doctor, and they were just like, “Oh, your hip’s misaligned.”
Brianne: Oh!
Krystal: And I’m like, “How did that happen?” They’re like, “I don’t know. It’s misaligned. We’ll realign it.” And I’m like, “Is this a normal thing that happens?” In the same appointment I also asked about my knees cause they’re the ones who always hurt. And then they’re like, “Oh, that happens sometimes.” And I’m like, “To like a 20…” what was I? Like, 21 at the time?
Brianne: You’re like, “Okay. But do all of these things happened to the same 21 year old very often?”
Krystal: Right. And like, I never really ran again after that. Cause like, it would come back a little bit, not as bad as the first time. And I’m just like, “Well, I guess running isn’t for me.”
Brianne: “I just have a funny hip.”
Krystal: Yeah. It was really confusing.
Brianne: Yeah. Yeah. It’s so weird once you start to like, put pieces together, and you’re like, “Oh, that doctor just didn’t know.” Like, “The questions that I was asking were the right questions.”
Krystal: Looking back, I think my doctor actually was quite confused, but they just didn’t admit it.
Brianne: Right.
Krystal: But I also wasn’t like… I didn’t know how to press them like, properly, so I just let it go.
Brianne: Yeah. It also feels like, I think, “What are they going to do?” Like, you have an injury and the injury… like, they’re treating it or they’re not treating it, but they’re… the underlying thing… there’s nothing to know yet. Not that that’s really a defense. That’s terrible. Okay. So you had a running injury while you were in college. And you stopped running, but you were like, “Okay, well, that’s a weird thing, I guess.” And then, did you more or less go back to normal, but without running?
Krystal: Mostly. Like, I just always deal with headaches. That’s a thing that has always happened to me. But for the most part, my health went back to baseline until grad school, which is when all of the stress and whatever made my body into a disaster, and all of the EDS and all of its friends came and was like, “Hi, nice to meet you.”
Brianne: Yeah, there was like a perfect storm. It’s interesting knowing about EDS a little bit, how people are like, “It’s weird that chronic illnesses like, so often have a stressful onset. Is it the stress?” And it’s like, “Well kind of, but also like, the kindling was already there. Like, it didn’t come from nowhere.” Okay. So what were you aware of first?
Krystal: Like, symptom-wise or?
Brianne: Yeah, like when that was starting.
Krystal: There was a huge change to my mental health first. That was the first thing that came. And I went to see a therapist who, this plays a role later, but coincidentally, also has EDS. It was amazing. So I had this whole like depression/anxiety, and I was talking to her and at some point during grad school, I offhandedly mentioned to her like, “Oh, I was walking from my train stop to school, which is like a mile, and for some reason I felt compelled to sit down halfway. Like, I just didn’t have the energy to continue going. I must be really depressed or something.”
Brianne: Yes. That’s like, what I was like exactly. Like, “Why can’t my brain keep up with anything?”
Krystal: And she’s like, “Oh, that’s interesting. You should go see a medical doctor and make sure like, your hormones are fine. Your thyroid is fine. Like, you don’t have like, a auto-immune disease.” And so that kind of started my medical journey of going to doctors and them being like, “You’re probably depressed. You should see a psychiatrist.” And I’m like, “I don’t really want to.” Also, cause I had a lot of weird reactions to medications when I was going to a psychiatrist, which I guess is normal for people with EDS and such.
Brianne: Yeah. But at the time you were like, “I have bad luck with medication,” right? So, you had had some mysterious need to sit down while you were walking, and you mentioned it to your therapist who, incidentally, is chronically ill, and your therapist suggested that that was maybe not a problem for therapy, basically. Okay.
Krystal: Yeah.
Brianne: Yeah. And also you now realize, you’re like, “Also there’s mental health history, and mental health medications I’ve always had trouble with.” So then, did things start to kind of pile up slowly or did things go real quickly?
Krystal: It started slow. So it then started with like, aches and pains when I woke up. Like, my legs and arms were just super tired all the time, and like, there was this like, overwhelming fatigue. And that happened maybe through one summer, and then towards the fall, when I started revamping my schedule a little bit more, I started having nerve pain. So, nerve pain in my arms. And then I was like, “Oh, this is really not good.”
Brianne: Yeah. It’s like, so more… it’s electric. It’s like, a whole other thing than fatigue, where you’re like, “Well, am I tired?” I feel like you never wonder if you’re having nerve pain or not.
Krystal: Right. If I’m tired, I’m like, “Oh, I’m just stressed,” or, “Oh, I’m just depressed or I’m just anxious.” But nerve pain, I’m like, “Oh crap, is there something wrong with my brain, my nervous system?”
Brianne: Yeah. “This feels serious.”
Krystal: Yeah. What happened one time is at school I was working, and I just felt really out of breath, and I felt really tired. And I was like, “I’m kind of scared. I’m going to go to my health center at the university.” And then they were like, “I don’t know. Let’s send you to a rheumatologist. Why not?”
Brianne: Okay. Yeah.
Krystal: Yeah. They’re like, “There’s nothing wrong with you. Your temperature is fine. Like, you don’t seem sick, I guess.”
Brianne: “The two things that we know to check for.”
Krystal: Yeah. And then I think this was the same visit or maybe a followup visit was like, “I think you have fibromyalgia. We’re going to send you to a rheumatologist.” The doctor at my school sent me just this packet of like, “This is what fibromyalgia is,” and handed it to me. And I kind of was sitting there and I’m like, “You just kind of told me I had this chronic thing that can’t be cured.”
Brianne: Yeah. Perhaps a little bit more conversation is necessary.
Krystal: Right. And then they’re like, “There’s nothing else I can do to you.” And then the specialist was like, “Yeah, you probably have fibromyalgia.” So I have this really bad history with rheumatologists. Like, I cannot stand them right now. The first one was like, “Oh yeah, well, most of my fibromyalgia patients feel like they want to die,” which was confirming, but also kind of messed up to say, when you first meet someone.
Brianne: Yeah. Like there are so many ways to try and be like, “Just so you know, you’re not alone in experiencing this as difficult.” There are much gentler ways and different things to say that are not that because that is jarring.
Krystal: She was also not really fond of medicine for some reason. Like, taking medication. So I think I just had a couple of muscle relaxers, which I also react really badly to, for some reason.
Brianne: Right.
Krystal: My history continues. But eventually she left the practice, and I got switched to another one. But at this point I’m kind of like “Fibro doesn’t seem like the whole picture.” I also have this really weird relationship with fibromyalgia because just throughout my diagnosis history, it’s been one of those things where like, “It’s just fibro. Like, there’s nothing else wrong.” And I’m like, “There’s obviously something else wrong.” So even if fibro is something that I have, which I still don’t know, I’m kind of like, “I don’t want to touch it.”
Brianne: Yeah, that’s so valid. It’s such a complicated thing that like, fibro is a symptom cluster really. And there’s research into causes of that symptom cluster. Like, it is a real experience and a real diagnosis, but it’s not a diagnosis with a known underlying cause, or even really a single unifying theory. It’s like, probably a whole bunch of people with different underlying causes and the same symptom cluster, but a lot of doctors don’t treat it that way for some reason. They like, either just like, “Fibro’s fake, and that means that you’re not sick at all.” Or they’re like, “Everything you have is caused by fibro.” It’s like, “Well, nothing’s caused by fibro. It’s descriptive.” It’s not anything. Like. This whole linguistic mess. It’s become a lot clearer to me the more I’ve talked to people, and the more that I hear people especially with fibro, who turned out to have an underlying condition, which is like… again, doesn’t mean that fibro is not real. It means that fibro is secondary to the underlying condition and not everyone with the underlying condition have fibro as a result. Okay. That’s like, all of the disclaimers for everybody listening about diagnostic validity. It’s complicated and understandable.
Krystal: It gets even like, more messed up when all of your blood tests come back negative. Well, at least within the range, and I’ve learned recently that the range is kind of crap. Like, even if you’re within the range, but you’re like, on either end, it could still mess up your whole system.
Brianne: Yeah. Yeah.
Krystal: I went from rheumatologist to rheumatologist to try and figure out what was wrong, and they’re all like, “Fibro!” There was this one rheumatologist that I went to who was supposed to be really really good. And they were off of my insurance, so this was out of network. And it was probably the worst experience in my life.
Brianne: Oh, no!
Krystal: Cause I like, met with her, and I had mentioned the EDS cause at that point I was like, “Oh, I think that this might actually be a thing that I might have.” She was like, “Well, even if it is EDS, there’s no cure. You just have to go to PT or something, or like, they just have to like, learn how to like, position themselves properly.” Something really like, an offhanded remark about that.
Brianne: Yeah.
Krystal: She also… I followed up in an email, and she was like, “You’re not hypermobile.” And I’m like, “You didn’t like, test, you didn’t do the…” what’s it called? The Beighton score. She didn’t do any of that to me. And I was like, “You don’t actually know, and it’s on my chart from my other doctor.”
Brianne: Yeah. Like, “You’re just not even… this isn’t About me. It feels like you’re not looking at my info.”
Krystal: Also the fact that she said that EDS can’t even be cured, but like, she was still like, “It’s probably fibromyalgia.” And I was like, “That also can’t be cured.”
Brianne: Right? Yeah. Like, “What is your enthusiasm here?” And with EDS, I’ve probably said this like a million times in this round of podcast episodes that are going to come out, but it’s so frustrating because yes, it’s true that there’s no targeted treatment or medication. But like, one, it is absolutely true that learning about your body mechanics can make a big difference for a lot of people, and two, it informs all of your other care. Like, it should inform cardiology. It should inform, I mean, literally everything. So it’s so ridiculous for doctors to be like, “You don’t need to know if this applies to your body or not.”
Krystal: Right.
Brianne: So there’s a rant.
Krystal: Yeah. I think long story short, like, I ended up finding this primary care physician who… I think his daughter has EDS, so he’s really familiar. And he handles a lot of EDS patients in the area. And I finally got my diagnosis: hypermobile EDS, surprise!
Brianne: You said you had mentioned it to your previous doctor, so by then you were like, looking for care for EDS to be evaluated for it specifically, right? You weren’t like, “What could I have out of anything?” You were like, “Who can actually help me with this thing that seems to be at least part of what’s going on?”
Krystal: Yeah, I think a few people had mentioned it was a possibility to me, a few people who at least know of medical things. And I was like, “Well, I do kind of pass this like, weird arbitrary Beighton score thing, and I also have all these other symptoms that I guess kind of match.” And then I got that diagnosis, and then with it… I don’t have to have an official diagnosis for dysautonomia or POTS, but it is like, a thing that I know I have.
Brianne: Right. I mean, other kinds of dysautonomia are more complicated, but POTS like, when you check at home, you’re basically getting the same information as when the doctor checks. And that doesn’t mean that a doctor isn’t valuable for managing it, but it just means like, it’s not a lot in question. Your autonomic nervous system is dysregulated, you can tell.
Krystal: Yeah. I know early on, when I first learned about dysautonomia, I brought it up with an older primary care person, and they were like, “Oh, do you have like, a Fitbit or something? Like, do you check this?” And I’m like, “Why aren’t you… isn’t this your job?”
Brianne: Yeah. “Can you check it?”
Krystal: Like, “How do you know if I can afford a Fitbit?”
Brianne: I think about it that all the time too, which is that like, Fitbits and other… I know some people who are very deep into tracking tools like, Garmin has a fancy watch. There’s like, a bunch of them, and they’re so helpful for dysautonomia, but they’re… none of them are considered medical right now. And they absolutely should be. You should get a Fitbit as soon as someone thinks that you might have dysautonomia, and you should get to keep it. Like, they are a medically necessary tools, but they’re not priced or acquired that way right now. That’s like, everything that doctors think about, what might be helpful, “Have you tried this expensive intervention that I think you might like if you can afford it?”
Krystal: Yeah. It’s a mess. I’m really privileged. I can afford a Fitbit, and I can afford a lot of tests, and I have reasonably good insurance since I’m still a grad student.
Brianne: As soon as you’re in a community like, you know where the barriers are with other people too. It’s not like, “Oh, cool. I ended up being okay, so now it doesn’t matter that it’s a problem.” okay. So you were diagnosed with EDS, and you live with dysautonomia and POTS although you have not had a tilt table test, which is… plenty of people who are diagnosed that way also, like without one. So it’s kind of arbitrary.
Krystal: Yeah. Yeah. When I did go to a cardiologist, they were kind of like, questioning my EDS diagnosis and they’re like, “You should get genetic testing.” I was like, “If it’s hypermobile EDS, that doesn’t really matter, so…” But I don’t know… that ended up falling through. I also ended up figuring out that CSF leaks were really related to EDS.
Brianne: Yeah. So you were like, “I have EDS, and now I must learn all about it,” probably, as a grad student. And you recognize POTS right away, or like, kind of pretty soon. How did you start to uncover the other co-morbidities or complications? Were you like, paying more attention and you could feel it?
Krystal: Yeah. So, the CSF leak in particular was like, the weird one that I had no idea about. I took a medical leave for maybe five months, maybe like a year ago, and during the medical leave, I was basically horizontal the whole time. And I was just attributing it to like, “Oh, I’m in pain, and everything sucks. So I’m just going to lay down.” When I went back to work, which coincidentally happened at the same time the pandemic hit, so at least I was at home. But I noticed that I couldn’t sit at my desk for very long without getting like, this whole like shoulder pain and like, a headache and a migraine eventually. And I was like, “Oh, this is weird. What does EDS have that could cause this?”
Brianne: Which again, this is one of the reasons that it’s so important. It’s fine that there’s no magic drug. Being able to Google that is already so helpful, or wherever you do your searching.
Krystal: Right, Yeah. And so first was like, instability, any cervical spinal instability, but like, all my MRIs and imaging are always normal, like frustratingly normal.
Brianne: You’re like, “I would love to have a healthy neck, but if I have the symptoms of an unhealthy neck, it’s not very comforting.” Same as any other test.
Krystal: Right. I think also my therapist, coincidentally also had a CSF leak in her lifetime at some point. And so she was basically like, “Well, it could be like this, this, or a CSF leak.” And I was like, “Oh, what’s that? Let me Google it.”
Brianne: Yeah.
Krystal: I ended up finding a specialist, I think that was recommended to me. My imaging was still pretty normal, so they were like, “It’s probably nothing. But if you want to, you could wear this abdominal binder for like, a couple months, and see if your leak symptoms get better. Cause if they do, then that means that you probably have a leak because you’re raising your spinal pressure by having this constriction.”
Brianne: Okay. Is it like around a chunk of your torso, kind of?
Krystal: Yeah, it’s basically around most of your torso. I think people also wear them after like, abdominal surgery to like, kind of keep everything together. But it also happens to raise fluid pressure. I don’t know terminology.
Brianne: Yeah. And I will say, like, I don’t know as much about CSF leaks because they’re like, too close to the kind of thing I get squicked out about. But so cerebral spinal fluid, which is like… what it sounds like brain and spine goo. And if your connective tissue isn’t optimal, it’s possible that the lining of your whole situation that keeps that goo inside can be punctured or kind of… I’m like rubbing my hands together as if people can hear me and know what that means. Yeah, and so obviously if it’s not sealed, then the pressure will go down, and if you’re vertical, your brain is going to feel that first. This is just for people listening, the really technical explanation. So that’s what the CSF leak is basically. And so now what you’re describing would be… it’s like, obviously you can’t put pressure on your brain. I look ridiculous, but people can’t see me. I’m like thinking about the words for head, but you can put pressure on your back by putting pressure on your whole body. I think. I know that I didn’t explain it any better than what you’ve said, but this is like context for people who aren’t used to this corner of the world.
Krystal: Right. I’m also going to adopt spinal goo into my vocabulary. It’s a great phrase.
Brianne: Yeah. Yeah. All of my words are just, “How can I talk about this not anatomically to trick my nervous system into not thinking that I’m talking about nervous systems?” because it makes me faint.
Krystal: Yes. Please tell me if I’m getting too like, detailed.
Brianne: Yeah. No, and you’re fine right now. Cause it comes up a lot like, in these conversations, and so sometimes I do start being like, I’m going to listen slightly less to some of these words. And if that happens, that’s why, but so far so good.
Krystal: Okay. Cool. But yeah. So when I put the abdominal binder on… as a side note like, I absolutely hated the binder. For some reason it like, makes me feel really like, depressed and like, ugly and gross. Like, I don’t know. It’s like, this weird psychological thing.
Brianne: Yeah. Like, a type of dysphoria, but yeah… cause dysphoria obviously, there’s gender dysphoria, but there’s other experiences. Like weird body not the way it wants to be thing.
Krystal: Yes. Weird chronic illness related dysphoria, but I can’t really put into words what exists in my brain.
Brianne: Yeah. That’s valid.
Krystal: And then I ended up talking to the nurse, so the nurse was really great. The specialist himself was kind of like, “Your imaging is normal, so whatever.”
Brianne: Yeah. “So why are you here?”
Krystal: Yeah. The nurse followed up, and the nurse was really great. And she was the one who suggested the abdominal binder. And after like, I think a few months of trying it, I was like, “I got better, and I’ve had like, almost no migraines and very few headaches.”
Brianne: And were you able to be upright more often? You were kind of doing more of your normal activities with it on?
Krystal: Yeah. For most of the workday I could. Nighttime always got worse because you’re upright for so long. Like, not even the binder could help you at that point.
Brianne: You noticed a difference, but it was not the same as not having the problem.
Krystal: Right. Yeah. So then, they can patch it up, and I eventually got that procedure. I had to have it twice because the first one didn’t take.
Brianne: Oh no!
Krystal: Apparently that’s normal. I would assume that it’s more normal for people with weird connective tissue.
Brianne: The injury is more normal for this population and also poor wound healing is normal for this population. Yeah.
Krystal: Yeah, right. The first time, I got up from bed, I guess a little too fast, and I was like, “Oh, that doesn’t feel right.” And then like, all the symptoms came back like, almost immediately.
Brianne: Oh no! You must’ve been so frustrated.
Krystal: It was so frustrating, and then I had to wait another like month and a half or something. And then with the pandemic, obviously things are slow and hard to like, schedule. And then like, my partner couldn’t come with me, either time. And I hate doctors.
Brianne: Right. Understandably.
Krystal: Yeah.
Brianne: And so the most recent one… obviously you said they were both during the pandemic, but the second one then, was relatively recently to when we’re recording, right?
Krystal: Yeah. I think it was in the end of October maybe. That one took, and so right now I’m sitting up.
Brianne: Yes.
Krystal: Like a human.
Brianne: Yes. It’s so exciting to be able to sit up sometimes.
Krystal: I told my primary care that when I saw him a few weeks ago, and he was like, “It’s amazing the things that you get excited about.” And I was like, “I know, right?”
Brianne: Yeah. You’re like, “You don’t understand what it’s like to have your brain be like, ‘Vertical is not happening.'”
Krystal: Yeah. I mean, EDS sucks in general and all the stuff that comes with it, but I think the CSF leak was definitely the most disabling symptom that I’ve had so far. And then of course, cause I’ve been horizontal for months, my neck is now a mess, and it hurts. But at least it doesn’t hurt because of the CSF leak. So I can like… I have pillows that I conveniently place around my body.
Brianne: Yeah.
Krystal: Yeah. And then I’ll get PT, probably next year, and that should help more.
Brianne: Yeah, I was going to ask you about that. You’ve probably seen me talk about this, but I just started PT this year, in October, I think. So I’m like a month and a half in or something, and I can’t do it every day. Like, I’m trying to be so gentle about it, but I already… on the days when I do it, I can really tell that my body is like, aligned better and so much happier. And then I kind of get mad that it’s like, “Why didn’t I start this 20 years ago? Why didn’t… Why wasn’t anybody looking for this? Blah, blah, blah.” But I let it go. PTs is really helping for me.
Krystal: Right. My first round of PT, which is before all this leak stuff happened, like, I was like, “Why does my body feel so much better with these random stretches that I’ve been told to do?” Like, it makes no sense.
Brianne: Yeah. All of my exercises are very gentle, and she’s given me some ways to make them a little bit more… like, more resistance or more difficult, but they’re still all lying on the ground. I have like, three sitting up exercises and one standing stretch, but I got to be like, “Hey, can you give me some modifications for, if I’m lying on my back all day?” She was like, “Yes, here’s your lying on your back all day workout.” Regular care does not stand up to this, to people who understand hypermobility. Okay. So that was in October. And then, it sounds like… this year must be really hard or to kind of, untangle if you were like, adjusting to the pandemic. You had come back from medical leave. I guess a while ago now, but like all of these things are kind of stacking on top of each other.
Krystal: Yeah. I came back from medical leave April. I found out about the leak early summer. I think my first patch was July. My second one was October. I also was like, I think a few weeks ago, put on anti-histamines, so both H1 and H2 receptor blockers. I don’t know. I haven’t really looked at terminology that much. And that has been amazing also.
Brianne: I started, just taking them at all with like, safe over the counter doses back in April, I want to say. Because I had been… I had a big crash in April. I don’t really know what happened, but anyway, I was like, “I feel terrible, and I’m sleeping terrible. And I need to do something, and I know people are talking about this.” And it was like, it didn’t make me not crashed, but it made my sleep so much better. And I was like, “I need to learn more about this later,” because I’m sure it’s not… it doesn’t work for everybody. Not everyone has the same underlying patterns, but like, it’s too much of a coincidence to ignore that a lot of people with connective tissue problems also have mass cell activation problems and also their sleep is impacted.
Krystal: No, your tweet from a few hours ago, I was like, “Oh my gosh.” Since I’ve taken it, a few days after, I’ve been sleeping so much better.
Brianne: Yeah. Yeah. It made a big difference for me. And then I like, just this week… after starting them in April, this week I’ve been really dysregulated again. And I was like, “I need to like, do some of the research to find out what the actual sleep histamine thing is.” And I had decided to do that, and then I got to interview Alex for a podcast episode. So, probably it’ll be like, right before or right after this one. Hard to say, but it’ll be in this batch. So there’s an episode, and it’s three hours. And Alex shared a lot of the research that they’ve done into this stuff because they had been diagnosed with narcolepsy and like, went really deep into sleep architecture and like, histamine cycles and all of this stuff. And I was like, “I have to do much less research now that I’ve been lucky enough to listen to this, so great.”
Krystal: I am excited to listen to it when it comes out, because I need to know.
Brianne: Yeah. Yeah. So I’m really excited to share that. What I really would love is for us to be able to see doctors and allergists who know about this cross-system problem, but that’s not the world that we’re living in right now.
Krystal: Right. At some point I see a neurologist who’s also kind of a sleep specialist, and basically they’re just like, “You have idiopathic hypersomnia. You’re always tired, but we don’t know why.” and I’m like, “That’s not helpful, but okay.” Now I kind of know why
Brianne: Right. It’s so hard when you’re like, “Okay, well what’s dysautonomia, and then what’s just like, ‘My body hurts because it’s taken so much abuse,’ and then what’s maybe a mast cell reaction or like, some other kind of immune problem?” It’s tough.
Krystal: I think dysautonomia is interesting because it can be caused by so many things. So I’m like, “What’s the pots? What is the mast cell? What is the CSF leak?” Cause that definitely improved my dysautonomia when that was fixed.
Brianne: Oh, yeah, I bet. And it’s so hard untangle. Okay. So since the running incident, which is when you became kind of more aware that like, something interesting was going on, did you go down any weird, unrelated research holes, or like, weird experiments that weren’t typical or kind of any of that other stuff during that time, while you’ve been also investigating and also a full-time student?
Krystal: So after the running incident, I… well, cause everyone always told me, “Oh, you’re so healthy. Like, it’s amazing how healthy you are.” So I didn’t really think it was anything major.
Brianne: Right. Or that it would mean… like that it meant something.
Krystal: I’ve gone down rabbit holes of auto-immune issues because I have all this inflammation that I’ve been trying to track, hence all the rheumatologists. I think it ended up being mast cell because it’s definitely gone down a bit since I’ve started taking the anti-histamines. But yes, I’ve looked at a lot of auto-immune stuff, so I’m quite educated about that now for some reason.
Brianne: That’s how I feel, too. It was like, I was in this middle stage for so long where it was like, “Something’s going on. What do I need to learn about so that I can get tests? Like ask the right questions or whatever,” but it was not like, any of those.
Krystal: Yeah. Yeah.
Brianne: And then, especially as you’re starting to look at mast cell, have you thought much or looked much into environmental triggers and diet triggers? Like, is that something that you’ve had to think about or has it been not a priority because it just hasn’t been the biggest fire?
Krystal: It hasn’t been the biggest fire. I also have this issue with tracking food. For just reasons that food is such a big part of my life and like, my social life, that like, anything that would make me think that I can’t eat a certain thing, just throws me into this spiral of like, anxiety.
Brianne: Yeah.
Krystal: Yeah. And then environmental triggers, I haven’t really tracked that much, mostly because it’s just too much work.
Brianne: Yeah. I feel like it’s the kind of thing where like, the position that you were in before you knew that you had a CSF leak… it appears to me anecdotally, that it’s like, if you’re that sick and you don’t find the information… so it’s like, if the binder hadn’t helped, I guess, and then you were like, “Okay, well, back to the drawing board.” I feel like that’s when definitely for me and other people have to be like, “Okay, do I really have to do this work of like, thinking about all of these other things?” It’s so much. And if it’s not the main problem, it’s like, an expensive time waste. God, I just want healthcare to know more about us already. That’s… is too much to ask?
Krystal: Same, yeah. So you’re putting out fires, so you put out the main fire. But then when you put out that fire, a bunch of other fires appear cause your body’s like, “I can focus on these other things now.”
Brianne: Yeah. “We have enough awareness for you to notice this thing that was probably already going on, but you didn’t feel it or whatever.”
Krystal: Right.
Brianne: Yeah. Sometimes it feels like it never ends. So since diagnosis, how has school been? Up until that point, you probably were just like, “I’m a student. Nothing to think about here.”
Krystal: So school… just school and research was not the worst. I was pretty lucky that my advisor and my lab are pretty supportive. And so like, it’s… I mean, it took a long time for me to use mobility aids around them, but like I eventually got there and it was fine. And now I’m just the girl with the cane.
Brianne: Yeah. Yeah.
Krystal: My lab is not accessible though, which is quite frustrating, and I wrote a whole article about lab accessibility, like a few weeks ago. What has been an issue… or what was an issue was, I also do field work on occasion. And field work for me, in my lab is you either go to the middle of a forest somewhere on top of the giant tower and put an instrument up there and you climb up and down, that’s one, or you gut out an old plane from the sixties that is now owned by NASA, and you put a bunch of instruments and a bunch of scientists fly around into… I think the last one was fire plumes or something like, smoke plumes.
Brianne: Okay.
Krystal: The second one, so this the plane one, I almost couldn’t go because you had to fill out a medical questionnaire and the doctor denied me participation access. It wasn’t like a, “Okay, let me talk to you as a doctor and see what your needs are and…” you know. It was just like, “No.” It was outright like, discrimination. Like, “You’re not allowed because you have some kind of thing wrong with you.”
Brianne: Yeah. And like, probably something that the doctor didn’t really understand. Like, “You have a scary-looking thing.”
Krystal: Yeah, I think I mentioned my medication, which at the time was an SSRI that also worked for fibro, I think. I mentioned that I can’t lift more than 40 pounds because I would hurt myself, and I mentioned that I use a mobility aid on occasion, not even all the time, just sometimes. And they’re like, “You’re a danger to the whole mission.”
Brianne: Yeah. You’re like, “Okay?”
Krystal: And I’m like, “Am I though? Like, nothing changed. Like, I can still… like, I don’t need to do any of the, like… I don’t need to walk. I don’t have to carry things. I have teammates who can do that, and they know my needs. We ended up fighting it, my school and I, but it was this whole thing where like, I had to jump through so many hoops. At one point they were mad that I was taking medication, even though they didn’t bring that up the first time.
Brianne: Yeah.
Krystal: I don’t know. I think we eventually won. I probably called them out on Twitter. That probably helped. No one confirmed this for me, but I remember making a post on Twitter. And I remember someone commenting, “I’m going to contact this person.” And then the next day, all of a sudden they’re like, “Oh, things are moving again, and we’re going to try and fight this more.” Cause we had given up like literally two days before that. And they’re like, “Someone called someone and was like, ‘What the hell is going on?'” And I’m like, “Did I cause something?”
Brianne: “Oopsie.”
Krystal: Yeah, that was one of the biggest things that has happened since all this chronic illness stuff is just being denied access to my work. This was a big project that could end up in my dissertation. Like, I was responsible for stuff. I dunno, it could have like, set me back depending on where this project fell in my like, priority list of research projects. And then just like, I can’t stay in lab… like, grad school is just like, you work 24/7, and I can’t do that.
Brianne: Yep. Yep.
Krystal: I can’t skip meals to run an experiment cause then my body gets all shaky and everything gets thrown off. Yeah. Grad school’s a mess when you’re chronically ill. I think that’s the takeaway.
Brianne: Yeah, that’s a very fair takeaway. You’re right, the hours are ridiculous, and there’s like, a presumption that the work is your first priority over your own body. Not just like, “You should care more about the work than your friends,” which is also weird, but yeah. Yeah. It’s intense.
Krystal: Also, people don’t really know how to talk to you, like asking how you are.
Brianne: Yeah.
Krystal: They’re like, “Are you doing better?” I was like, “Define better.”
Brianne: Yeah.
Krystal: And like, I can’t really complain because then they’re going to like, start feeling sorry for you. If you come with a new mobility aid, that’s a whole thing.
Brianne: Yes, it really is. You’re like, “This doesn’t mean anything.” You know, one of my friends who I’ve known a long time and who has definitely had some like, adjustment learning curves around like, chronic illness and stuff cause it is hard to wrap your… like, nobody knows anything about it until they get exposed to it because of other like representation problems, blah, blah, blah. But one of my friends was like, “I’ve realized that you just don’t want to have to explain it to people.” Like, I want people to understand, not that I don’t want them to care, but like, those kinds of questions of like, “Oh, something’s different. Tell me about the difference today.” Like, there’s so much small talk that’s oriented around if you’re like, better or worse than last time you saw someone, and that’s not good small talk for us. It just sucks.
Krystal: Sometimes I just want to complain. Like, I think my latest Twitter post was like, “Oh, my rib is out and I have to wear a wrist splint today.” And people were like, “Oh, that sucks.”
Brianne: Yeah.
Krystal: That’s so much better.
Brianne: You just want a calibrated response that’s not like, panicking about things that you’re like, “I can’t panic about this anymore. I don’t have the energy for it.”
Krystal: Right.
Brianne: Take your panic energy elsewhere.
Krystal: I’m just like, “Oh yeah, my ribs do weird things. No need to worry. It’s fine.”
Brianne: Yeah. Yeah. It’s annoying, but it’s not like, an emergency. This one thing isn’t.
Krystal: I think this also trained my partner to like… he like, looks at my face before he freaks out. Cause he’s like, “Okay, you seem okay and calm about it, so I’m not worried.”
Brianne: Yeah. And like, usually that’s a good one. I know my own like, capacity to interpret whether or not something’s in emergency is also not very good, just because I’m like, “Oh, I’ve lived through a lot of things that might’ve been emergencies, and I didn’t know it. So maybe everything is.” But you’re right. People should definitely trust us and our own level of worry. I specifically run into that. My husband will be like, “Wait, describe it again. I would be worried if I was having that experience. I’m concerned that you’re not.” And it’s like, “There’s a medium in here between catastrophizing and medical trauma, I guess.”
Krystal: Right. Yeah. He’s like, “Are you sure you’re okay?” And I’m like, “I promise I’m fine. It’ll eventually go back into place at some point. I don’t know.”
Brianne: Yeah, “I need you to trust me that this one, we just have to wait out.”
Krystal: I also like… so many bad experiences at the ER. This is a universal issue with chronic illness.
Brianne: Have you been since you knew or some before?
Krystal: So I think right before the initial fibro diagnosis, I had like, this huge flare, it was a lot of nerve pain like, chills and dysautonomia and the whole ordeal and like, difficulty breathing, I think. I don’t remember. I went to the ER, and they basically like, gave me a chest x-ray and like, made me go. They’re like, “I dunno what to do with you. It’s probably fine. We’re not even going to bother with your nerve pain. We think you’re anxious.” One of the doctors who did the intake was like, “Oh, you seem really anxious.” And I’m like, “Yeah, because my arm really hurts from nerve pain, and I can’t really breathe.”
Brianne: Yeah. Yeah. You’re like, “That’s not… that’s a normal reaction to this situation.”
Krystal: Right. And then I think they probably gave me a chest x-ray to like, say they did something, and then that was it. And then the second time was… I was weaning off some medication, and I guess I weaned off too quickly. But it also came with a whole bunch of triggering other symptoms. And so I went to the ER, and I’m like, “I think this is what it is, but also I’m having all of these other things. Here’s my medical history.” And like, I was all prepared. It was great. But my… I think it was a physician’s assistant. He didn’t appreciate my preparation. He saw some old test results because it was in the same medical group. And he’s like, “Oh, your, your blood tests look perfectly normal. How do you know you have this EDS thing?” And I’m like, “I went to a doctor, and I showed the nurse who brought me in all of my medical forms, printed out from this doctor. Like, excuse me?” And then he was also like, “You’re listing too many things that are wrong with you. What are you actually concerned about?” And I’m like, “All of them.”
Brianne: Yeah, like, “That they feel related because they ebb and flow together. Like, it’s not possible to… it’s never that just one of them needs to be fixed. It’s this whole weird pattern is not great.”
Krystal: Like, it’s a systemic illness. So if one thing is wrong, everything else is wrong. And I don’t know which one I should be more concerned about hence, I’m in the ER.
Brianne: Yeah. We need like, an entire other pathway to care for that kind of thing where it’s like, “I mean, it’s not an emergency in the sense that, like, I don’t know that I have an acute wound that requires attention. But like, it feels very urgent because I didn’t used to feel this way all the time, and I suddenly do. And I thought that doctors were supposed to care about that, but they often don’t…” also don’t have like, time, frankly. I know this is not just an individual doctor issue. The system is literally not designed for patients like us, and we’re the ones who feel the brunt of that, but oof.
Krystal: Yeah. Yeah, this is why I don’t go to ERs if I don’t have to. I don’t go to urgent care if I don’t have to like…
Brianne: Yeah.
Krystal: The more I can stay away from any type of like, medical place is fantastic.
Brianne: Yeah. Especially now when it’s like…
Krystal: Yeah. Well, especially now I’m like, “I’m not going anywhere near them.”
Brianne: Yeah. And then how… how has that been, to be visiting so many medical facilities this year when obviously infection risk was a big concern for everybody, and like, it is kind of difficult to evaluate risk factor for this EDS, dysautonomia, MCAS trio because people don’t usually include it on risk lists?
Krystal: Right. Yeah. So obviously, I don’t know if I’m high risk. I know that it’s probably not a great idea to get COVID because something’s going to go wrong.
Brianne: Yeah.
Krystal: And then I could possibly trigger something else to happen. Who knows? I have been going to in-person doctor’s visits, but they’re pretty sparingly. They’re like, once every few months, so I don’t think that’s too high of a risk. Sometimes when it was like, peak COVID numbers, I would kind of like, push them back a few weeks. But aside from that, like, it’s probably the same risk as getting takeout for me.
Brianne: Yeah, definitely. And for procedures and stuff, did you find… I guess that was in the summer, so the hospitals were in pretty good shape?
Krystal: Yeah. So that was July and October. So before… obviously before Thanksgiving mess. I don’t know what else to call it, but a mess. Yeah, so it wasn’t that bad. I don’t think… I mean, I think there was reduced capacity, so like, I had to wait a bit, and they were understaffed. So like, it took a little longer to get a bed and all of that.
Brianne: Yeah.
Krystal: It wasn’t the worst.
Brianne: But it like, felt safe?
Krystal: Yeah. It felt safe, but it just sucked because I couldn’t have like, my partner with me for any appointment. I really hate going into appointments by myself because they don’t listen to me as a woman, a woman of color.
Brianne: Yeah.
Krystal: Even if I pretend to be like, scientist grad student, Krystal, like… they’re like, “Oh, you’re a hypochondriac because you know too much.”
Brianne: “You’re using too many fancy words, and the only reason people use fancy words is to lie about their health to doctors.”
Krystal: Right. So I often like, play… I don’t know. I’m trying to kind of think of a different word here.
Brianne: I think like, ignorant or like…
Krystal: Yeah. I undermine my intelligence a bit
Brianne: Yeah.
Krystal: To not seem too, quote, unquote, smart, because then they get weirded out by that. But I also can’t seem too… I don’t know. Like, there’s a balance.
Brianne: Yeah. I think one thing that’s so hard about that, especially to me now, having done so many interviews where people talk about their kind of like, approach to doctors. I think it’s so clear to so many of us that like, “Yeah, being kind of tailored to that person does make a big difference in how they respond to me, and that’s unfortunate.” But then there’s also so much luck involved. Some doctors are just never going to help you because of whatever bias they have, and there’s nothing that you can do to fix it. And it’s like, “Okay, so I have a lot of control and also no control. Good, good.”
Krystal: Yeah, it’s really a crap shoot in what biases to these doctors have? What are they applying to you? What do they think of you when you walk in the room? I’ve had so many doctors, if I’ve come into an appointment with a cane, they’re like, “But you’re so young.”
Brianne: Yeah.
Krystal: That doesn’t mean I don’t need a cane.
Brianne: Yeah. And like, “My goal isn’t to like… not using a cane isn’t a primary goal of mine.”
Krystal: Yeah. Or they kind of like, undermine it. They’re like, “Well, if you think you need it.” And I was like, “If I didn’t think I need it, I wouldn’t have used it.”
Brianne: Yeah. “I’m actually not interested in your opinion on this issue. This isn’t why I came here. Cane’s not about you. It’s about my balance and/or joints and/or injury and/or whatever.”
Krystal: Right.
Brianne: Yeah. Yeah. There’s like, the normal crap about dealing with people who just don’t want to believe you. It’s unreal how widespread it is. And like, you were just talking about the intersecting biases that can really… and they’re… sometimes they’re strange. It’s like, there’s some things that you kind of know to expect bias, like gender or race or class, especially in medicine, and then there’s also this other thing of like, “Well, do you sound like, like you should be using medical terminology because I’ll let it slide if you like, took a nursing class once, and can explain that to me. But like, if I think you learned those words on the internet, I’m not going to listen no matter what else I know about you.”
Krystal: Yeah, it’s so frustrating too as like, a PhD student cause like, that comes with an enormous privilege of like, once I get my degree, I can be like, “I have this degree, so obviously I can research.” But like, that intermediate stage where like, you don’t have a title, and they’re just confused as to why you know all this like, scientific terminology or, “How can you read medical literature?” And I’m like, “Cause I happen to be trained in this stuff.”
Brianne: Yeah.
Krystal: And if you’re not trained, like, you develop these skills really quickly.
Brianne: Cause you have to.
Krystal: Yeah, it’s a necessity.
Brianne: Yeah. I mean, some doctors really are open to people bringing stuff in, which is awesome, and it’s great when it happens. But it’s like, when you bump into a couple of doctors who you can tell, just don’t believe you, because they’ve decided like, first thing, that you have nefarious intentions, like, it’s a really distinct feeling, and it’s obvious. Yes. Okay. Well, since we’re caught up to the present, and I know we’ve covered a lot of the main topics that I wanted to get to, is there anything that you wanted to talk about that we haven’t gotten to today? It’s okay. If the answer Is no.
Krystal: I’m not sure. Oh, I want him to complain really quick that I think it’s frustrating that emotions are so related to your symptoms. I can’t get upset without everything else falling apart. Or even like, talking to you now, just cause it’s a very heightened emotional state. I’m like, shaking a bit, which… it always confuses me. Like, I get hot and shaky and I’m just like, “Why, body, are you doing this?” It’s very frustrating.
Brianne: Yeah. Something that happens for me now… because I definitely get twitchier as I get more emotional, too… is that like, also, if someone’s not used to it… this hasn’t happened much this year, because I haven’t really seen many people, but you know, people who don’t see me all the time. If it’s like, “Oh, we’re having an impassioned conversation, and now it looks like I’m just magically falling apart.” And so people like, get distracted and sometimes stop listening. And it’s like, “If I had been twitching the whole time, I would be upset that you’re being distracted by it all of a sudden and not listening to me, but like, I understand why it would be concerning for someone like physical state to change this much.” It’s just how it is.
Krystal: Yeah. Like, a few times when I’m having a serious conversation with someone, and I’m just like, “I can’t stop like, twitching and the shaking, and ugh, this is just making this conversation so much harder.” Because then you get like, so… you’re like, hyper aware of it also. Because you’re like, “I’m trying to focus on this conversation, but I can feel my body losing its mind, essentially.”
Brianne: Yeah.
Krystal: Yeah. And I don’t know, it’s just very frustrating, but I also learned that’s a thing that happens to some people with chronic illnesses. And I was like, “Oh, it’s not just me.”
Brianne: Yeah. I think it makes sense to me now in the context of like, dysautonomia is your autonomic nervous system is disrupted and it’s like, your nervous system is… when you’re crying, that’s like, not… crying is an intentional thing. I know that we can choose to cry, but like, it’s also a body reflex to intense emotional… whatever. And so it makes sense that like, there would be other crossed wires in between, but it’s still like… especially after maybe a lifetime of having a lot of people imply that all of the pain was emotional. It’s really difficult to be like, “Okay, well it’s not caused by it, but it is triggered by it. And those aren’t the same.”
Krystal: Right. Yeah. Speaking of dysautonomia, I actually didn’t learn about it until I researched stuff and probably until Twitter. Cause like, when I got diagnosed with fibro. They were just like, “Fibro is pain, and so you just feel a lot of pain.” But they don’t like talk about… or my rheumatologists didn’t talk about any of the nervous system stuff that can come with it and also with EDS. I was just like, “Why is my nervous system acting up? Like, this doesn’t match with fibro.” And then I learned about the word dysautonomia and how it can be related to like a billion different things. And I’m like, “Why did no doctors tell me about this?” it’s quite frustrating.
Brianne: Yeah. Dysautonomia and hypermobility… they’re not… they could be caused by many different things. They’re not like, 100% meaningful. But just like, if you’re diagnosing someone with something like fibromyalgia, which is a symptom cluster, you should be checking if they have all of these symptom clusters, that usually come along with it. Everybody who gets diagnosed with fibro should be screened for hypermobility and dysautonomia, not because everybody has it, but because everyone that has it deserves to get it identified.
Krystal: Right. And then like, when you don’t know the name of something, it’s so much scarier.
Brianne: Yeah.
Krystal: I’m like, “I feel like I’m going to pass out and I get these hot flashes, and oh my God, do I have, like… I don’t know, something scary, like, a brain tumor or something?”
Brianne: Yeah.
Krystal: Or like, something that is like, terminal. These are things that I like, feared early on. Cause I was like, “I don’t have words to describe what this is, and I don’t know if other people have it. And what’s the outlook?”
Brianne: Yeah.
Krystal: Hence why Twitter’s so amazing.
Brianne: Yeah, no, Twitter is incredible for this. The internet in general. It’s amazing to just think like, how many people have found the better words and treatment options and probably diagnoses just from talking to other patients on the internet. Because all of a sudden, our only point of reference isn’t just like, a person who’s never felt what we’re feeling.
Krystal: Right. Cause like, it was just me. Now I know disabled and chronically ill people, both in my life and online, but like, originally I didn’t. I had no exposure to chronic illness or disability before anything. And I was just like, “My body is acting up. It’s scary. Am I going to die?” Immediate thoughts.
Brianne: Yeah. And then it’s like a, “How do I prioritize those? How do I talk about it? How do I get people to care that it’s a problem without being too upset, but also being upset enough?” It’s weird how… I feel like having to interact with other people around something that’s so scary and life altering can cause it to filter weird, too. That’s how it is for me.
Krystal: Yeah. I also feel like I just relate to non-disabled non chronically ill people a lot differently now. Maybe it’s just life experience at this point, but we’re on like, a different plane, I guess. I’m using hand movements, but no one can like, see what I’m doing. It’s fine.
Brianne: Yeah. No, it’s fine. But it is, there’s so many things about like, just living in a body that you have to pay attention to in this way, that if you’ve never paid attention to your body in this way, you wouldn’t have cause to be aware of kind of. And I’m not saying that like, chronically ill people or disabled people are the only people who know about their body, I’m just saying that like, the way that we have to know about our bodies is really specific. And I sometimes feel like… it impacts everything, and so trying to interact with other people, you’re like, “Oh God, what do I… what am I… what can I say that I know they’ll understand? What do I have to explain if I want to communicate these like really basic… things that now I feel really basic?” Like, there’s a whole vocabulary barrier that I didn’t know existed when I didn’t know about it, I guess.
Krystal: Right. And it’s like, “Who can I confide in about this? Who’s not going to freak out if I say… I don’t know… ‘Something subluxed today, and it hurts.’ Who’s not going to give you that weird pity look?” I hate the pity look.
Brianne: Yeah.
Krystal: I rolled up in a wheelchair once for like, an outing, and the look of someone in the group was just like, “Ooh, I don’t like you right now.”
Brianne: Yeah. You’re like, “I need you to just work on this somewhere else.”
Krystal: “I can’t handle your emotions and my emotions at the same time. Please leave.”
Brianne: Yeah. Yeah. Especially, I think, mobility aids are one where people have mixed associations with them because they’re associated understandably with like, acute injury, and if that’s your only… I know ableism is a big part of this, and I’m not pretending that that’s not a part of it. But there’s also this extra level where it’s like, if you’ve only ever used crutches or a cane or a chair, when you were like, having your own emergency, I think in addition to all of the bullshit that people project about how terrible it must be to need a mobility aid, which is like, in the culture and everywhere. I think people are also like, “Oh God, you must want to stop using that because when I was using it, I wanted to stop.” And it’s like, “Yeah. But when you were using it, you like, broke your leg. I’m using it because my pelvis is unstable. Like, we’re just not the same. It’s fine.”
Krystal: Right. I think people also project. Like, if they have family members who have dealt with… I dunno more… like, acute illnesses, but serious illnesses. And then they’re like, “Oh, you must feel horrible about your life because now you’re dealing with this thing.” And I’m like, “I’m not bad. Like, I’m fine for the most part. Like, I go to therapy, but like. That’s to deal with everything else that comes with chronic illness,” like, all the other stuff, but like, yeah. I feel like I’ve had to balance a lot of people’s emotions since… I dunno, everything started, and it’s quite frustrating, especially when they’re older than me. I think that that also sucks just being younger and chronically ill, like, adults that are older than you don’t know how to relate or deal with that, and they have like, their own existential crisis when they meet you. Cause they’re like, “But I’m old and healthy, but you’re young and not. I don’t know how these two things match.”
Brianne: Yeah. Like, “I don’t know what I owe you or like, what tone I’m supposed to approach you with.” And it’s like, “Maybe just don’t start by thinking about this. Just start by thinking about the things that we would talk about normally.”
Krystal: Right. Like, “I’m just the human being. Please treat me as such. I am not your therapist. I’m also not like, the cause of your existential crisis. It’s fine.”
Brianne: Yeah. Yeah. Like, in that circumstance or with peers, when it’s like, “If this is the first time that you’re realizing that somebody can become chronically ill, I’m gonna need you to work through that on your own time and not with me. Thank you.”
Krystal: Right. Yeah, there was ugh, I don’t remember the name of the book, but there was this book that basically described this. I can look it up while I’m talking. It basically describes this phenomenon of like, when you’re young and chronically ill that people just can’t… their mind can’t wrap around it. It’s called Invisible by Michele Hirsch. Invisible: How Young Women with Serious Health Issues Navigate Work Relationships and the Pressure to Seem Just Fine. And I highly recommend it cause like, I think maybe they have MCAS. They have MCAS and other like, different chronic illnesses, and they’re just talking about how… basically what I just mentioned, this existential crisis that young people and older people have when they meet someone who is not, quote, unquote, healthy and how they like, suddenly realize their health is finite. It’s not always going to be there, and it may not be there for the expected amount of time.
Brianne: Yeah.
Krystal: Yeah. I need to read that book cause I was in a weird space when I read it the first time, but it was really helpful to like, understand how I was interacting with people.
Brianne: Yeah, yeah. To like, know that it was a pattern that you weren’t… it’s like, at the beginning, you’re like… not you, anybody, but it’s like, “I feel really hurt or frustrated or terrible, by the way people are interacting with me. And because I’ve never been in this position before, and I’ve never seen it represented in media, I don’t even know how to describe the dynamic.” And it makes such a difference to just be like, “Oh, this is a thing that happens. Other people experience this. This person probably behaves this way around other people, which is too bad, but also means it’s not personal.”
Krystal: Yeah. Yeah. I think society just doesn’t know how to deal with… They know how to deal with acute illnesses, terminal illnesses, but the in-between is just a mystery and there’s no representation and there’s no manual as to how to like, navigate the world as a chronically ill person.
Brianne: Yeah. It’s all missing.
Krystal: Yeah, we just need more information.
Brianne: Yeah. I wonder, like… not to get too either optimistic or pessimistic about it, but I really do wonder how long COVID is going to change, just representation for this community, because we know that so many people who contract COVID just are going to end up with complications of a connective tissue/mast cell disorder, because so many people are undiagnosed until something like this happens. And like the visibility of synchronicity, I guess, even though it’s happened before, but it just feels like it might change some representation, something, but it might make it worse, I guess is the other problem.
Krystal: Yeah. I don’t know where I fall on long COVID yet. The way that my partner and I operate is like, not only do we not want to get other people sick, if we get COVID like, we don’t also want to become like… well, me, more chronically ill and him, chronically ill.
Brianne: Right.
Krystal: We’re fine with our health levels right now. But like, I don’t know. I feel really bad. Like, I keep seeing stories, which is basically mirroring of most chronically ill people’s stories, which is, doctors don’t believe you or doctors are like, “It’s probably in your head. You should… you need an antidepressant.”
Brianne: Yeah.
Krystal: I don’t know. It’s heartbreaking, but I don’t know if society is going to shift its views yet.
Brianne: Yeah, I don’t know that it will like, transform other people. I wonder if there’s like, a critical mass that will create some kind of self-representation or like… that’s what I’m really curious about. I definitely think a lot more people are just getting the same gaslighting BS that most of us have gotten on independent timelines for years, unfortunately, but they have the internet.
Krystal: Yeah, I think… I’ve definitely seen a few articles talking about the gaslighting, which I think is a good step in the right direction. Like, it sucks that it’s happening, but like, now it’s reaching more like, mainstream media outlets, and that’s really great. Speaking of long COVID, I also find it funny that when people think about getting COVID, they’re like, “I don’t want to get sick.” But like, they don’t think about the long-term effects that could happen. And I’m like, “It’s not just, you get sick and like, you know, the immediate, like horrible stuff happens. You can get kind of sick and then things happen later.”
Brianne: Yeah. Yeah. It’s one of these things where it’s like, some stuff that I think seems really obvious to people in like, chronic illness communities, disability communities, mostly about that are like, “Okay, well this is a viral infection, and we know that post viral illness is like… a kind of poorly defined segment of the population is very vulnerable to lifelong disability from post viral illness. So we know, and we’ve been thinking and talking about that this whole time.” And it just like, doesn’t permeate the consciousness of people who think that it’s either you’re healthy or you’re dead. I guess
Krystal: Right. Like, even before long COVID became a big conversation, like, just watching the ME/CFS community speak about it… and I was like, “Oh, this is a thing that I probably should like. Start thinking about.” And like, I told my partner. We already, like, were taking good care and like, you know, making sure we were social distancing, but like, it was like, “Oh, this is really like, important to not get us sick, but also not get other sick cause they might have worse outcomes,” kind of thing. But like, I feel like, that doesn’t resonate with a lot of people.
Brianne: Yeah. It’s like, it hasn’t even landed. There has been media on it. I know there has, but it’s like, people think like, “Long COVID, huh? Has it?” I feel like, to my mom, I’ll be like, “Yeah, a lot of people are experiencing this. Like, high percentages.” And people will be like, “Oh really? I haven’t heard about that.”
Krystal: Yeah, I think a bad thing about how the medical system talks about some chronic illnesses is that they’re like, rare or it’s like, a low probability. Cause I know when I was first thinking about EDS, I was like, “Oh, but EDS is rare. And so like, why would it happen to me? And why are there so many people on the internet that have it?” Or like, also fibro I’m like, “It’s kind of common, but like, not common enough where I’m like, ‘Why me?'” kind of thing, like, “How could this have happened to me?” And I feel like there’s that disconnect of like… it’s not small numbers. I don’t really know how to put that into words. difficult.
Brianne: Yeah. Yeah. And then like, most people don’t make a risk assessments about their health every day. So, most people aren’t constantly thinking about like, “Is this going to make my long-term health better or worse?” like, on a day-to-day basis, especially the worse part, I guess. And I think like, especially with connective tissue disorders where the day-to-day stuff for a lot of people is extremely manageable, and it’s the complications that could happen at any time and are extremely disruptive, and that’s kind of the problem.
Krystal: Right. Yeah, I think it’s helpful for us, who need to make calculations every day of like, “What can I not do to make sure that I like, keep my baseline?” Cause like, there’s always that fear of like, if you flare up, that your baseline is going to shift again, and that’s a horrible feeling. So I don’t want to do that. So I’m just going to be really, really careful and like, do all these calculations of like, “Okay, which mobility aids do I need? How long can I stay upright? How long can I stay in the sun? Where’s the nearest AC building?”
Brianne: Yeah. Yeah. And I think like, when you’re used to thinking about the world that way, it’s like, “Oh God. Now the world’s put another new limitation of like, stay more than six feet away from everybody, wear a mask if you ever leave the house, just don’t leave the house if you can help it.” And we’re like… so many of us have just been like, “Yeah, this makes sense. It makes as much sense as anything else I’ve ever had to completely turn my life upside down for.” But other… like, people who haven’t had to turn their life upside down, maybe many times, to prevent the worst case scenario are like, “I’ll just risk the worst case scenario.” We’re like, “Don’t do that. Stop risking it.”
Krystal: Right. It’s not… it’s not worth it at all.
Brianne: Yeah.
Krystal: Yeah.
Brianne: Well, 2020! It’s almost over.
Krystal: Yeah. Hopefully. Hopefully things come, and vaccines are tested on people that represent us.
Brianne: With people with mast cell disorders so that we know who can take the risk and who needs other people to take the risk for them. Yeah. Well, and we’ll see where that’s at when this episode comes out, but yes, here’s hoping for a safer outside world soon. This year has been so freaking hard.
Krystal: Yeah.
Brianne: I think also another thing that’s been so interesting doing these interviews, because I have one more after this, but so I’ve done like 10. And so many of us are like, “Yes, this… everything that’s happening has impacted me, and I am so worried about our communities,” and like, all of those things. Nobody is not sensitive to that. And also, most of us have still had our own standard, personal health dramas that are like, pretty all consuming a lot of the time.
Krystal: Yeah. I keep telling myself, “Don’t do anything that will put you in the ER or urgent care.”
Brianne: Yeah. That’s your job.
Krystal: “Body, your job is to be like, baseline normal.”
Brianne: Yeah. Protect as much as possible, as much as that’s ever in any of our control.
Krystal: Right.
Brianne: Well, thank you so much for taking the time and the energy to talk to me today. I know that it is not free.
Krystal: Yeah, it’s great. I actually really enjoy talking about chronic illness stuff to people because it’s something that I don’t get to do very often in like, real life.
Brianne: Yeah.
Krystal: So yeah, this is great. I really loved it.
Brianne: Yay. Thank you.
[guitar riff]
Drew: Thank you for listening to episode 76 of No End In Sight! You can find Krystal on Twitter @caffeinatedkrys. You can find me on Twitter @fibrofuckboy and if you want to support me directly and are in a position to, I have a Patreon where I post my poetry and other artistic endeavors at patreon.com/darkmagenta. You can find Brianne on Twitter and Instagram @bennessb, and you can find many more conversations about chronic illness on Twitter @RTsFromTheVoid. And don’t forget you can sign up to support the show over at patreon.com/noendinsight. Or, if you want to support the show but don’t have a few bucks to spare, we’d be just as grateful if you left a podcast review on Apple Podcasts. Thanks for listening!