Episode 21 – Brianna

No End in Sight, a podcast about life with chronic illness

Brianna Lane talks premenstrual dysmorphic disorder and chronic lyme.

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Transcript

Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.

This week I’m talking to Brianna Lane about chronic lyme disease and PMDD, which stands for premenstrual dysphoric disorder. Conveniently enough, April is PMDD awareness month, so it’s the perfect time for this story. Later in the episode I mention a few different resources about chronic illness and accommodations, and you can find those links along with the transcript for this episode on the podcast website at noendinsight.co.

Speaking of the transcript, this week’s is particularly confusing because our names are only one letter apart. So I just want to apologize in advance for any uncertainty about who is speaking if you’re reading the transcript on the website.

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: Okay. So tell me about your health as a kid.

Brianna: As a young kid I was, I was fairly healthy. Lots of strep throat and ear infections and stuff like that. But my issues are related to my period and my menstrual cycles. So it was basically from when I got my first period in sixth grade is when stuff started going wrong.

Brianne: Yeah. Like hormones shifted and… And initially did you identify it as something being wrong? To use your word?

Brianna: No… I think you don’t know if it’s… You don’t know if something’s wrong until you start talking to other people and start figuring out, “Oh, it’s not normal for me to cry every single day? It’s not normal to be sleeping as much as I’m sleeping.” You know, you don’t… It’s a slow process to figure out what’s normal and what’s not. So I’ll kind of tell my story of how it all started because it wasn’t really that wrong when I first started having my period. It was like maybe when I was in my late teens when I started just experiencing huge emotional shifts, like big time rage and off the charts PMS. And it was only a few days right before my period. And I thought that was just PMS. That’s just what PMS is. And most of my life other than that was pretty normal. It was just like five days leading up to my period and then my period was really rough, you know, really bad cramps. My mom reminded me that I always wanted to stay home sick and she would say, “Oh, it’s just your period. It’s fine.”

Brianne: Lots of people go to school or go to work or whatever.

Brianna: Exactly. Yeah. It’s like everybody that has a period deals with this. It’s fine. Just go. And so I did, I gritted through it. And then I learned about PMDD, premenstrual dysphoric disorder, when I was in college. And it was probably some blog post or something. I don’t even remember how I learned about it. And this in college. It was 1998 for me. And so this was…

Brianne: Early Internet.

Brianna: Yeah, yeah, exactly. So it wasn’t very easily accessible… Information wasn’t very easily accessible on weird stuff like this and no one was talking about it socially. But I saw the diagnosis somewhere and I met all the criteria. I was like, “I have that, I know I have that.” And then I couldn’t, I didn’t get a diagnosis until two years ago and I’m turning 39 really soon. Like that’s crazy cakes

Brianne: That’s like 20 years after. It sounds like, if it was 98ish.

Brianna: Yeah, exactly. I knew I had it. And I went to my general practitioner, well actually I went to urgent care a couple of times with cramps then, and they’re like, “Oh, it’s okay. We’ll prescribe you ibuprofen.”

Brianne: Yeah. I have a naproxen prescription for that because they were like, “You’re taking too much ibuprofen, here’s a different NSAID.”

Brianna: Yeah, exactly. And it turns out I was allergic to naproxen. “Oh then okay, then let’s give you aspirin or acetaminophen.” And oh great. Nothing touches the pain at all. And that didn’t even touch any of the emotional issues that I was going through. And so they put me on an antidepressant, which was fine, but still didn’t touch the majority of my symptoms. And so I was on an SSRI for years starting when I was 20, and then I switched SSRIs three different times perhaps. And I’m like, “this isn’t doing anything. Can we do something else?” And then they put me on an SSNRI. That wasn’t really doing anything. I finally got the diagnosis after maybe the seventh or so doctor I saw.

Brianne: And were they mostly general practitioners or were you seeing an OB-GYN or endocrinologist? I don’t know why I have trouble with that word every time.

Brianna: No, I saw a couple general practitioners and an OB, maybe a couple of OBs along the way. Like I went to Planned Parenthood a couple of times for some birth control, which is another common treatment that folks with PMDD get. And nothing was helping. And I knew that there were other paths to treatment besides giving me a pill that I take every day or whatever it is. But no one really believed me. I remember having one doctor look at me and say, “Well, PMDD is really hard to diagnose, so I’m just going to give you this instead.” Like literally she said that. And I mean it’s a common story with chronic illness and mysterious illnesses. It’s like we don’t get believed and it’s like, “Let’s just do the simplest possible thing.” And like, no, no, no. It’s really not hard to diagnose. I know my body so well and I can tell you exactly what happens every day of the month for me. And it was so disheartening. I think I went home and cried.

Brianne: Yeah, I bet.

Brianna: And so… I’m having trouble staying linear in my thinking. And so I finally ended up getting a diagnosis. And as the years went by, I was having more and more bad days a month, and less good days.

Brianne: Were they still stacked together in a way that was like… The time leading up to the end of your cycle?

Brianna: Absolutely it’s like luteal phase, textbook PMDD. And it just kept getting more intense as the time went by. And so I finally, I actually… The person who gave me my diagnosis, this is really interesting to me because I think it could help some folks that are looking for diagnosis. I went on to an online therapy situation so I could write to my therapist any amount of times.

Brianne: The chat-based ones?

Brianna: Yeah, exactly. And depending on what service you have, they will get back to you five days a week or once a week or whatever. And I did the one where it was constant and so she could actually witness my cycle. So she’s like, “Oh, I believe you now.” Like, “Oh, I see what you’re doing.”

Brianne: Like, “Day 10: I feel fine. Day 25: everything is a mess.”

Brianna: “I’m a raging lunatic.” Exactly. And so she could actually see the timeline and it wasn’t just me going into the doctor on a good day and saying, “Hey, this happens.” Or me going to a doctor on a bad day and thinking that I’m just crazy cakes all the time. So she gave me my diagnosis and I was really grateful. I was like, “Oh, finally I got a diagnosis. This feels really affirming. This is great.” But it doesn’t mean anything anymore. This was about two years ago and now thinking back it’s like, “I already knew that!” Why did I need a professional to tell me that I had this thing? Because with PMDD it, it doesn’t have… It has a treatment plan, but the treatment plan is like throwing spaghetti at the wall kind of situation. I’m still experimenting with what works and what doesn’t work and they still don’t know exactly what PMDD is, like what causes it. Like some people think that it’s a histamine response. Some people think it’s a histamine response where your body is almost allergic to your hormonal situation.

Brianne: Like to the progesterone or something else that would be elevated at that time?

Brianna: Exactly. But you know, progesterone therapy doesn’t work for everybody either. So that’s still a mystery. So it’s a diagnosis with no real story. I mean, it’s nice. It’s nice to get something on paper and something that you can pare down and say, “Okay, these are the treatments that have worked for other people.” But then I could already eliminate a bunch of treatment plans, even by self-diagnosing. And so say there’s 11 treatment plans, I’ve already eliminated nine of them by self-diagnosing and now I can get a doctor to maybe listen to try the other couple. And so when I got that diagnosis officially, I brought it to an OB and I said, “Let’s do some testing.” And even then I had to stick up for myself and I had to say like, “I want this done.”

Brianne: Yeah. Which is hard! Like it seems really obvious I think. But when you actually go to a doctor and you’re like, “One, I’ve done research, please still respect me. And two, I have a specific test that I want to request. Like, humor me?”

Brianna: And you’re going to that person and they’re supposed to be the expert and you’re like, “But no, I’m the expert of my own body.” So it’s such a weird thing to request this of this professional person that in my opinion, if they were doing their job right, should have laid this out for me in the first place 20 years ago.

Brianne: Yeah. And that’s a long time to be like, “Hey, things are really off kilter on a very predictable schedule. Help.”

Brianna: Yeah. And so I brought this to an OB and she’s like, “Yeah, that’s really hard to test for. So why don’t we… I mean I could do these tests for you.” Which, the tests that she offered were to see if I’m premenopausal, which I’m not. And which I knew I wasn’t. [laughs]

Brianne: Right. Well it hadn’t just started either.

Brianna: Exactly. And I didn’t really understand the test before I took it and I had really good health insurance at the time, so I was like, “Whatever, let’s just do this test.” And then the other one was to see if… God, I don’t even, it’s like a salpingogram situation. I don’t know. They put dye in my uterus to see if both tubes were open, which again, I’m not sure why that test even took place. It’s really good to know in case I ever want to birth children. But I think that was this doctor’s perspective. Like, “Oh, you have all these hormonal things going on and you might want to get pregnant someday. Let’s see if you can.” I’m like, “But I don’t…”

Brianne: “That’s not what I’m asking.”

Brianna: That’s not what I’m asking, exactly. So it was good to know maybe, but it didn’t provide any information about my PMDD or any helpful…

Brianne: What kind of testing had you been looking for? Or do you know?

Brianna: I wanted a hormone test that would give me a full hormone panel of what’s happening through my whole month. And she said that that was…

Brianne: Like to go through all the phases?

Brianna: Yeah. And she said that would be really difficult. Which it’s not, I learned, because here’s what happened next. I put out a message on facebook and I was just like, “You know what? I’ve been, canceling events with friends and appointments and I have like only five to 10 good days a month these days. Maybe it’ll help to just tell the world at once what the hell is going on with me.” And also I believe in the strength of speaking up so that others can feel validated as well. So I’m like, “You know, I have this public presence on facebook. I’ll just do this.” I wrote, “Here’s what’s going on with me. I have premenstrual dysphoric disorder, here’s my story.” Basically I explained in short what I just explained to you. And then this woman that I know from the midwifery community here in Minneapolis, she stepped up and she was like, “Come see me.” And I was like, “I know you…” And she thought that we should get to the bottom of it. And I went to see her and she gave me a bunch of assessments, which feels revolutionary, you know, someone’s actually assessing me instead of being like, “Yeah, that’s too hard. Let’s just give you this.” So that felt super validating. Our first session together was two and a half hours because that’s not unreasonable to talk about bizarre health stuff.

Brianne: It takes a long time to go through a full history, which there usually isn’t time for in the traditional system.

Brianna: Yeah. That’s a reasonable time for sure. Yeah, you and I are sitting here being like, “Duh!” Because we get it. Chronic illness is just looked over.

Brianne: But no, it’s not standard.

Brianna: It’s not. And so I felt really affirmed in that she gave me assessments. She ended up… Okay, I’ve listened to a couple of episodes and I’m so curious as to how many people end up with this diagnosis, but she ended up testing me for lyme disease.

Brianne: Sure, yup, definitely.

Brianna: Because that’s become a little bit of a catchall.

Brianne: Yeah, it’s a quagmire, I would say.

Brianna: A quagmire, yes. So lyme disease and coinfections, bartonella. So it turns out… and then the two tests that they have for lyme disease here in the States are crazy because they only test for a certain amount of strands and certain levels. And there’s just a lot of controversy about the western blot and the ELISA test. And so we actually sent my blood to Germany. I put down the money and I sent it, we sent it to a lab in Germany that tests for more strands. And I felt more comfortable about doing that than the ELISA or western blot. And so I had that done and then we talked through other symptoms that I had, like I’m tired all the time and brain fog and I’m sore and I have this really weird neurological symptom that like half of my body… like I could draw a line down the middle of my body. This is my funnest symptom to talk about because it’s so weird, and so entertainment value. I draw a line down the center of my body and the right side of my body works just fine. It’s like a normal human. And then the left side of my body is wrong, is like crumbling. The muscles in between my ribs just like collapse on me and I have bell’s palsy on the left side of my face. My face feels like it’s drooping a lot more than it actually looks like it’s drooping. And I started to notice that that is part of my cycle too. And it is. So, I don’t know, maybe the lyme is causing my PMDD, that’s what my practitioner kind of thinks. But I don’t know. I have no idea. But hands down I have lyme. The test showed it.

Brianne: Do they still do a western blot but like fuller spectrum, or is it totally different? It’s okay if the details don’t make sense.

Brianna: It’s a totally different test, just like a different lab a different test. And a wider range of…

Brianne: Borrelia. Because there’s different strains also, right? Like lyme is borrelia… I can never say this one either.

Brianna: Bergdorfi.

Brianne: Right. Yeah. I always got Bergdorf and then I’m like, “I don’t know how to pronounce the rest of the word, I got the emphasis wrong already.” But there’s so many other borrelia strands too. I know one of my questions right now is that my… the screener and it’s the other one because there’s the ELISA and then there’s… there’s two screeners. So like there’s two different ways that they screen with the immunoassay or something. Anyway. There’s IgG and IgA in the western blot, which is the different antibodies. But the way that they screen for it in the first place, ELISA is one and then there’s a second one. I think either igenex has a different method or labcorp has a different method. It doesn’t matter. People listening, probably half of them will already know and half of them will be like, “This is nuts”. But, for example, my experience is that my screener has been consistently positive, but my western blot changes. And so my doctor’s like, “Well that’s weird.” Because there’s all these other problems around false positives with lyme testing and also false negatives with lyme testing. I’m sure you’ve been down this rabbit hole now, but like this number is not changing while this number is changing and that’s weird, but we don’t know why.

Brianna: Right! And I mean I’ve been sick and getting sicker for so long and dealing with the PMDD for so long that I’m like, “Whatever, I don’t care. Use me as an experiment, look at my lab numbers. I don’t care. Let’s just keep trying things because I am sick of being sick and I’m sick of having to cancel my life because…”

Brianne: It’s hard.

Brianna: Yeah. And lyme or not, or you know, western blot or whatever.

Brianne: So when were you tested for lyme? Because that must have been within the last two years.

Brianna: Yeah, that was last year at about this time. So right before I was tested for lyme, this practitioner that suggested that test… oh, going back to a piece of our conversation, she also gave me the test where you spit in a vial every other day. That was really easy, that tested my full hormone panel. And I’m like, “Why couldn’t this other doctor give it to me? I don’t know.”

Brianne: And a saliva test is preferred for a lot of hormones compared to a blood test.

Brianna: Exactly. And it was so easy and I just froze my little vials and sent them off to the lab and it was insightful. Because I kept a journal that month and it’s like, “Oh yep.” Again, affirmed that my luteal phase is messed up. And then, so the lyme test was a year ago. The hormone test was maybe six months ago. We’re not ruling out other tests to see like how I’m metabolizing vitamins and everything like that. Oh. And we tested for epstein-barr virus and there is some research that suggests that lyme and epstein-barr, you probably know about this, are related. And my labs show that I have been exposed to EBV and that’s probably chronic in my life and that’s where the fatigue comes in and all that. Since I’ve gotten the lyme diagnosis, I have been more active on facebook groups of lymeys and I’ve been in PMDD groups for a while and it’s just a really common story. All of this. And I don’t think that my story is very unique or anything. But what I think is important that I really wanted to talk about is that even though we can predict my symptoms and how cyclical they are, and some other people with other chronic illnesses can kind of predict what makes them flare up or can predict their symptoms, it’s still present even on the good days. Because I am just so aware of my symptoms being right around the corner that I have to live my good days differently than healthy people. That makes sense, right?

Brianne: Yeah. Yeah. And I think it resonates with me on a bunch of different levels because I feel like I’ll get torn sometimes with like, “I feel really good so I need to do a lot of stuff.” And then sometimes doing a lot of stuff causes the next day to be worse. So on the one hand you can trigger things and I’m sure that’s different for everybody, but it’s a common complaint. And then so sometimes I’ll be like, “Oh, I feel really good today. I should enjoy that, but also rest so that maybe I’ll feel good tomorrow.” It’s like a weird gambling mentality about how to optimize this completely unpredictable… Even if it is, like you say, predictable. I dunno, for me at least it still is all over the place. Like what will be a good day and what won’t be.

Brianna: Absolutely. Absolutely.

Brianne: Yeah. And so we’re getting to the present. So you’re information gathering right now. Gosh. So that’s like a specific stage in it too, because something that I’m curious about is… the internet probably plays a really big role in this, but are there… You talked about some of the medications that you’ve tried and had tried earlier on. Are there other lifestyle interventions, or what else have you experimented with over time kind of before and since working with this practitioner?

Brianna: So yeah, you’re keeping me right on track, thank you. [laughs] Because that’s what I wanted to talk about.

Brianne: For me it ties in so much to having enough energy to do this stuff because when I’m super flared, I don’t do my maintenance stuff that I’m supposed to do. And then when I feel good, I’ll be like, “Oh, I lost half the day to all the things that I’m supposed to be doing to have more good days.”

Brianna: Right?! Yeah, that exactly speaks to the fact that even when we’re healthy, we’re not healthy. So I take, right now I’m on four different antibiotics, long term. I’ve been on all of them for almost a year for the lyme and coinfections. And then I have to take an antihistamine every day because I have crazy allergies, like to I don’t even know what. And I’ve been doing that for a long time. I’m on a lot of different supplements and vitamins and tinctures, which I’m really bad about taking, because it’s not just like popping a handful of pills. And then I’m supposed to do all the detox stuff that’s, like you said, really hard. And it feels like, I think this is partly because of our culture, but when I take a bath, I’m actually doing work and to me it feels like, “Oh, but that’s pampering.” It’s not pampering though! It’s like, actually this is work that I’m doing. And so I’ve had a really hard time over the last year trying to, one, pace myself and two, not look at treatment as pampering or something. Yeah. I don’t know how to say it any better than that, I guess.

Brianne: Well, it’s like there’s a… I think for me, what that reminds me of, is when I go through really bad fatigue phases, for example, I’ll spend a lot of time in bed. Like I’ll go through weeks or months where I’m napping every day and especially early on when this first started happening and I would tell people about it, like friends even, like, “Oh, I’m having a really hard time. I can’t stay awake.” And first of all you have to be like, “It’s not a mental health thing. This is a physical health thing. But I’m sleeping like 15 hours a day.” And people are like, “That sounds really nice. I would love to be able to take a nap.” [Brianna gasps in agreement] And you’re like, “Nope. Nope.”

Brianna: Exactly. That is a kicker. The two things that I hear a lot is that, like I have had hypersomnia for forever. Like I can sleep like a champ, but I never feel rested and I didn’t realize that that wasn’t normal for a long time. All my doctors downplayed it. And I’m like, “I think that’s wrong, but you don’t so cool.” But yeah, like, “Oh, I would love hypersomnia instead of insomnia.” I’m like, “No. Same result.” Except I’m losing all this time to sleep and I’m still not rested. And I changed my diet radically when I started seeing this practitioner. And so I’m now, I would say like 90% paleo, like antiinflammatory protocol. And people who say, “Oh, you look great. Have you lost weight?” Like that one. My friend with chronic EBV told me, she said it really well. She said, “It seems like people are saying, ‘Oh, being sick looks really good on you.'”

Brianne: Yeah. [laughs] “You’re working really hard. This must be the outcome that you are going for.”

Brianna: Right! No, nothing to do with it, sadly. It’s amazing. It’s just amazing the things that we think, that society thinks health is. Health is being fit or thin and getting eight hours of sleep and feeling rested. I don’t know, it’s just bizarre.

Brianne: Yeah. Your whole relationship to it can really change. And it’s… I mean lyme is hard. Even just culturally lyme is hard. And also changing your diet is hard. Like there’s some tough… Everybody has so much ingrained junk, I feel like, around what we eat that, one, doing it as a lot of work and then two, having people find out that you’re doing it can be a double stressor when they have opinions.

Brianna: It’s such a conversation. And like, when I want to cheat, I feel like I owe people an explanation of why I’m cheating and that’s just weird because I should just be able to, we should just be able to eat what we want to eat and not have it be such a weird conversation. Yeah, it’s bizarre.

Brianne: Yeah. I think there’s a part of it that’s like, “Oh, if anybody else sees me eating whatever…” I’m at a point right now where I’ve been off sugar completely for the last two or three months, but my cheat is mostly sugar-free candy, which isn’t good or paleo. It’s definitely not a health food at all it just doesn’t have sugar in it. But even stuff like that I don’t want to eat around certain people because then they’re going to make assumptions. And then when I say no in the future they are going to want to push that no, because having seen me push it before gives them the impression… Like it’s this whole thing. It’s this whole thing.

Brianna: Yep, I’m right there with you. Yeah, exactly. It’s weird.

Brianne: And so you’re kind of in the middle of a relatively new protocol, so it might be hard to say, but are there things that you’ve done either on the supplement or the lifestyle or the medication, whatever, any front, things that you’ve tried that you’ve noticed have made a difference even though obviously you’re not like, “Well, I’m a healthy person now! I can give it all up.”

Brianna: [laughs] Right. I like talking with you. You get it. I think that changing my diet was actually really helpful. I have a lot more energy. But starting the antibiotics and that whole protocol was really hard. It actually flared up all of my symptoms at once. I mean we hit it really hard right out of the gate.

Brianne: A herxheimer reaction, probably?

Brianna: Oh, so much herxing. And I don’t herx much anymore. I can tell when a herx is coming, I’m like, “Oh, that’s interesting. That hasn’t happened in awhile. Cool.” And the one thing… So right now I’m confused with my health because I think I’m the same as I was at this time last year, but I’m better than I was six months ago. Like the start of the treatment was really crazy and really hard on my body. And so now I’m trying to figure out like, “Well, is it actually helping or was it just…”

Brianne: You got worse and then better.

Brianna: Yeah, yeah. I’m doubting myself a little bit and it feels weird. But I can say one thing is that since that treatment, I don’t get ovulation migraines anymore. I used to get migraines at least once a month when I ovulated and those are gone. Like I got a migraine last month, and that’s when I realized, “Whoa, I haven’t had a migraine in four months.” And I didn’t realize it until I had one again. I was like, “Whoa, this feeling I haven’t had in a while.”

Brianne: Yeah, it sometimes takes that.

Brianna: Yeah, it was weird that it took that for me, but yeah, it did.

Brianne: So that is a good thing for some reason.

Brianna: Yeah. So cool. I guess I’m going to keep with this protocol, but I feel a little lost and like I want to cry still a lot.

Brianne: I think it’s really hard to measure progress when everything is so nebulous, basically. And when it’s all self reported. I just started symptom tracking in a little agenda that I bought myself, which is exciting because I’m a terrible symptom tracker. But I’m going to a neurologist in May and I want to be able to show up and report what’s been happening over the past few months instead of whatever seems important that day, which is usually how it feels… Like, “Well what’s hurting now? That’s what I’ll tell you about.” But using paper has been helpful for me and I’ve tried a couple of different symptom tracking apps and one of the problems that I have with them is that they’re almost all designed with like a spectrum. So severity basically. So I’ll be like, “Okay, today I have neuropathy…” And it asks for a scale from one to 10. But it’s almost never measurable on a scale from one to 10. It maybe has like on, off, severe. I think that’s the most that would make sense to me for tracking. And then I have to try to map that onto their interface. And it’s like, I don’t know. So if I look back a year, kind of like what you were saying, I’m like, “Well a year ago I was having neuropathy but then it went away. So what does that mean?” And do I remember accurately when it was happening or when it was gone? Because I probably just… Like if it wasn’t severe, I didn’t care. There’s so many things that go into self reporting that can make it really difficult to even assess, beyond is it happening or not happening? What does improvement look like?

Brianna: Yeah. I totally agree. And then there’s the aspect of tracking that it just feels like another thing to do. It feels like a lot of work and a lot more of my energy and awareness is going to my illness than I want it to be. And then you get that there’s this mind-body connection, and if I think positive thoughts, then that will affect my health. So if I’m tracking that’s not positive thoughts. So it just feels like, is it really worth it? And also I think I’ve kind of been trained from doctors over the past 20 years that tracking doesn’t even matter because nobody believed me anyway. And I was like, “No, it’s like clockwork people.”

Brianne: That’s it. Somebody did ask me the other day because something, in fact neuropathy, my parasthesia in my arms was worse two weeks ago. And it was also I think the first week that I had started tracking and someone was like, “Well, do you think it’s really worse or do you think it’s that you’re paying more attention to it?” I was like, “Oh, this time I’m sure that it’s worse.” But that question is sticking with me now.

Brianna: Exactly. And I feel a little bit crazy, but I know I’m not.

Brianne: Right, right. That’s something for me… Like I’m married and when we got married I was pretty much in it. I was like in the middle of all of this. And so regularly I’ll just be like, “Am I losing it? Like am I just a lazy person now?” And he’ll be like, “No, I can see you day to day. You’re not just like, ‘Oh, today it would be a fun day to hang out on the couch.'” But having this other input, which I haven’t always had is like, okay, this feels like a little bit of sanity. Because people who don’t see it, if someone doesn’t see it all the time, which is most people, like it doesn’t… I don’t know, it doesn’t even register or it doesn’t necessarily make sense.

Brianna: Yeah. My partner and I have been together for 10 years and I feel like he’s my best symptom tracker because he’s an outside force that’s like, “No, you’re not crazy.” And I think it’s helped him a lot for me to have actual diagnoses though. Because then he can read about them even though I’ve been reading about PMDD for 20 years, he can be like, “Okay yes, it is a thing and here I can learn about it.” And he’s read blogs, like “How to deal with a partner with PMDD” because a lot of people don’t survive relationships with people with PMDD. It definitely can be a huge burden. It is. It’s hard. And then the spoon theory, have you guys talked about that on your show at all?

Brianne: I haven’t talked about it very much. I feel like, I mean, I certainly know about it and I think most people I’ve talked to know about it, so I feel like we’ve referred to it but never explicitly, if that makes sense. But yeah, we can talk about it.

Brianna: I love it. I think it’s just this cute story. People that are listening, if you haven’t heard it, it’s called the spoon theory. It’s just a really quick analogy about how spoons represent energy and it’s given my partner and I a different language to talk about it. Like, “Oh, I only have two spoons today.” Okay, great. That’s like almost code word, you know, and he’s like “Save your spoons.” And it’s been really nice to have that language about it. And you’ll see the hashtag spoonie around a lot. I think it’s just, it’s light and cute and makes a whole lot of sense.

Brianne: Yeah. It makes so much sense. It’s very unifying, especially on Instagram. I agree, the language of it is so helpful because you just don’t… before I read that I had tried to explain the idea to people a few times and it was… I mean I still feel like I don’t have a good diagnosis and maybe I never will. But I was in the thick of getting tested for lyme. I was positive for coinfections. I was in a moldy house and didn’t know it yet. Like very sick. Trying to explain it like, “Here’s the thing. When you see me, I’ve been banking energy.” And trying to just explain this concept and I don’t feel like it ever fully resonated, which also I was having a ton of cognitive impairment, like super brain foggy. And so my ability to explain things was not at my normal, which also matters. And so it’s just such a good shorthand for like, “All right, guess what I am done now.” Or like, “One more activity and then I am out.”

Brianna: Uh huh. Yeah, I think common language around anything is really important. And shorthand. So I’m a musician. I run a music venue. I live the gig life basically, like make my own hours.

Brianne: Which is probably good and also very hard sometimes.

Brianna: Yeah, absolutely. And I recently did a project that I was awarded a commission to do a work that illustrated life with chronic illness. So I created this 30-minute music piece all about my cycle. And so each of the songs represented four days of my cycle. And the goal was to represent what it feels like, sometimes without words, sometimes with lyrics, all that. And the spoons came into play. Like I made these instruments out of spoons, like almost sounded like wind chimes. And so I’ve been thinking a lot about language and how we talk about it. And one thing I did mention in the show was phrases like “I’m tired” mean something totally different to you than it does to the world. And one of the reasons why I wanted to talk to you is that we need to talk about this stuff more so that we can find more common language and so that we can find a common ground with all chronic illnesses. Like, I don’t think I’m at that sick sometimes. And it’s not a contest of who’s more sick, but I am very grateful for the abilities that I do have. And so with those abilities, I’m going to take that and talk about this shit because I can.

Brianne: I agree. And that really resonates. I think the language thing is so… I don’t know yet how to kind of get around it. But that’s one of the things with talking to people, like having a full hour where we can spend 10 minutes trying to explain what we mean when we say that we feel tired. That feels important because it just needs to be hashed out and there’s not a lot of… I mean there are a lot of people having this conversation now within chronic illness communities I think, but there’s not a lot of like media being made that is outward facing, if that makes sense.

Brianna: Yeah so, I mean this is a very niche podcast you have happening, but it does do the work of shaping and molding and paring down the language that we can use in a broader community and be seen and heard in a more positive way instead of us being lazy or why don’t we work out more or whatever. You know, the things that healthy people do to stay…

Brianne: “Try harder.”

Brianna: Yeah. Try harder. That’s fun. That’s a fun one. Like the things that healthy people do to stay healthy aren’t going to work to make us be healthy. And everybody’s just so different.

Brianne: Yeah. Which is a huge part of it. I think especially with chronic lyme and especially with the controversy around chronic Lyme, one of the things that’s so frustrating when I stumble onto people who are like, “chronic lyme isn’t real.” Like, chronically ill people who are like, “Oh, the chronic lyme conspiracy, all of those doctors are quacks.” I mean a big part of me feels like I am totally open to the possibility that the people who have been diagnosed with chronic lyme that borrelia isn’t the problem and that actually maybe a huge part of the healthy population has been infected with borrelia and it itself does not cause a problem. Totally. But it doesn’t matter. And coming down on the diagnosis as if people who get the diagnosis are like, “Ha ha! Now, I have an excuse to, I don’t know, take a lot of antibiotics that are experimental and make me feel like crap!” Like that’s how it’s happening. It’s like this intersection of chronic lyme, which people are mad about, and then chronic fatigue like CFS/ME which also is kind of idiopathic and so they overlap in a weird way, but people aren’t as mad about it for some reason. I don’t know.

Brianna: And then there’s like fibromyalgia being fake or whatever. I mean there’s so much of that that. I mean why would…? It just baffles me. Like, why would people just choose to make up this stuff? And I mean, sure, there might be like a very small percentage of sick people that are, I don’t know, doing it for attention or whatever, but that percentage is probably like 0.3%. Why would you want to be sick?

Brianne: So that’s all tied up in there too. And sorry I’m getting a little bit dark, I’m not near a light switch, so I’m slowly dimming I realize.

Brianna: Oh, it’s okay. Flu. We Demir I realize.

Brianne: Yes, I feel like there’s a lot of, for me, definitely emotional fraughtness about trying to navigate this stuff and then also present it to other people as an added layer.

Brianna: Yeah. So I think going back to the language of it all, I think that there’s some important work to be done of creating some common language that’s easy for healthy folks to understand that doesn’t separate all of our diagnoses. Because, yeah. Lyme, chronic Lyme, who knows. We really don’t know a whole lot about lyme at all. And we’re gonna find out so much more in the next 20 years, but we don’t know. And we don’t know a lot about MS or fibromyalgia either, or any of those diagnoses that people are looking at us going, “Really? Really, are you really dealing with that?” But so creating a common language that we can talk about, no matter what our diagnosis is. And I think the closest we’ve gotten is the spoonie thing. You know, the spoon theory. Go read the spoon theory. It’s gonna make sense to you. And that’s by a woman with lupus, you know. But but if we can do work and present that to healthy folks, I think we’ll gain a better understanding of how we live our lives.

Brianne: Yeah, and creating empathy. That does make me think of something that I’ve been… it’s come up a couple times. But as you’ve been navigating this, so not even just the last year or the last two years, but the last 20 years maybe, how has it impacted your relationships and also your ability to work? Becuse you kind of mentioned that, but those are the two main things that can be very difficult when your health is unpredictable or your body is unpredictable.

Brianna: Yeah, I think I lost some friends and I think I lost my ex to PMDD. Like once I got the diagnosis I called her up and was like, “I got the diagnosis, I’m really sorry!”

Brianne: “It’s real!”

Brianna: And she’s like, “I know honey. It’s okay. We had problems beyond that.” But it did not help that I would turn into a raging lunatic once a month and I wasn’t self aware enough to say, “Okay, no, my body’s working against me. I should just be quiet right now.”

Brianne: Is that something, that specific thing as a coping mechanism… Is that something that you have developed or that has started to work? Like are you able to do that, to say, “Okay, I know where I am and my cycle, these thoughts or feelings might be impacted.” I understand that that’s not possible, but since you mentioned it I’m curious.

Brianna: It’s really, really hard work. That’s definitely something that I try to do. And my current partner is really good at saying like, “Where are you at in your cycle because maybe we shouldn’t be talking about this until next week or the week after or whatever.” And actually, so I run a music venue, a nonprofit, and I work really closely with one other person and he’s always aware of where I am in my cycle too. So I call on other people to help me with that awareness. That like, yeah, maybe I shouldn’t be taking on this project right now. Maybe I’ll share the workload a little bit for this week, until I bleed basically. Which is funny. Having my issues mostly be related to my cycle and that’s something we don’t talk about either, menstruation and cycling is just like a faux pas still. Like what’s that about? It’s weird. But to be able to talk about it with the people that I am closest with. So my two stepkids know as well and I don’t put the burden on them to help me figure out where I am in my cycle, but they know so that their dad can say to them, “She’s PMSing, duck and cover people.”

Brianne: Yeah, something else is happening. Which would also be difficult I would think just in the context of the culture, you’re totally right, we don’t talk about this very much and we’re discouraged from bringing it up. But then the flip side of that is there’s sitcom jokes or whatever that are like, “Oh, she must be on her period!” Which are pretty sexist and derisive. And so finding somewhere in between where it’s like, “Oh no, it’s real.” Because even for me I’m like, “Oh no, it’s real.” I am impacted by my cycle pretty aggressively and it doesn’t make me whatever 90s sitcoms suggest. So I’m sure that is in there.

Brianna: Yep. This goes back to that, “Oh, you’ve lost weight.” I mean, if we just take a step back and just be like, “No, everybody’s complicated. It’s going to be fine.” And believe people and not crack stupid jokes. I’m not lazy. I’m not crazy. But I think it’s important to keep talking about this stuff for younger people too. It took me 20 years just to say, “I’m not lazy. I’m not crazy.” And so you were asking about work, I don’t want to stray too far away from that question because I’ve been thinking a lot about that lately and listening to your podcast and hearing what other people do and I don’t think I could hold down a real job right now. I don’t think that I could work for someone else and be tolerated. When I worked for other people before, I was always a touring musician and then I would hold seasonal jobs and then go on tour again. And anytime I worked for someone else, I would call in sick to work two days a month. And that even started in college. Like I planned my absent days around my period. I wouldn’t show up to class. And I knew that I would need those days. And I never asked any employers and I never asked any professors if I could have this time for accommodations. Now that I know myself well enough and I have the confidence to say I’m not lazy or crazy, I could ask for accommodations. But I also feel like I’ve gotten so much worse over the years that I don’t want to get a job working for someone else and say, “Look, I have this going on.” Because it would make me feel so vulnerable and like my job would constantly be at risk because I couldn’t show up all the time. So it’s important that I have my own hours. It’s important that I can work a few hours in the morning, take a big long nap and then a few hours in the evening. It’s important that my coworkers kind of know where I am in my cycle.

Brianne: And that you’re in an environment where that feels comfortable to talk about.

Brianna: Yeah. I couldn’t imagine working for a company and being like, “I’m about to get my period!” Yeah. That’s just weird because we don’t talk about it. It shouldn’t be weird.

Brianne: But it is. For quite a while, for almost five years, I worked for a very small company where me and my boss were the only full-time employees and he was a dude who was, I think like five or six years older than me. And I get one day of debilitating cramps usually. And it was exactly that, where I’m like, “I can’t call him and tell him that’s what’s going on.” I just, I don’t have a relationship that will survive that kind of honesty. Which, sure, some of that is me and in my head to get over. But like there’s no HR to go to.

Brianna: Right, exactly. And I mean it shouldn’t be that big of a deal in our society, but it is. It’s just the circumstances that we’re dealing with, you know. Like we should be able to talk about periods more. And again, I’m old enough now and I know myself well enough now that I wouldn’t have trouble going to someone and saying, “Look, this is what it is.” But I still feel the societal pressure of yeah, that’s not a really sustainable conversation.

Brianne: Yeah. Yeah. It’s just hard.

Brianna: Yeah, absolutely.

Brianne: Um, great.

Brianna: Great! Let’s talk about these awful things!

Brianne: Yeah, it’s what I’m up to.

Brianna: Good though, it’s good work.

Brianne: Yeah, no, I think it’s great. But just many of these conversations are tough, but for a reason because this stuff, no one… I also think one of the difficulties with any kind of chronic illness, and asking for accommodations can feel the same way. It’s like there’s a fear that may or may not be justified that the people that we’re talking to are going to think that we’re asking for pity maybe or asking for something. And with accommodations we are asking for something, but it triggers the kneejerk response of like, “This person is asking me for something. I can’t just listen and be empathetic and be like, ‘yeah, sometimes things suck’ because then I’m responsible.”

Brianna: Or the fear of saying like, “Oh, is this going to become a trend?” Like, yeah this is going to become a trend. I’ve been dealing with this trend for 20 years, so I think I can deal with it.

Brianne: It’s like an every-28-day trend.

Brianne: Yeah, exactly. So you as my employer or my coworker or whatever, I believe that you can deal with it too. It’s not too much to ask. But the fear of thinking it’s too much to ask or this fear of being a burden on someone else is almost a daily concern.

Brianne: Yes, there is a fear of being a burden. For some reason something that’s been in my internet sphere a lot lately is people talking about asking for accommodations with chronic illness. So one of them was a Twitter thread by Matthew Cortland, I think, who whether or not you follow him, he’s a lawyer and I think he has IBD. And so there was a long thread about trying to get accommodations while in law school and how distrustful everybody was because of one of his conditions. And somebody that I interviewed was the same, they were just like, “I need a bathroom a lot.” Like, “I need to be able to go to the bathroom often and for unpredictable amounts of time.” And that the professor’s reaction is like, “No, you’re just trying to get out there and… Whatever. I don’t know. Skip class, check your phone more?” Like I don’t know what they think. And then Liz, who I think I talked to in episode five, I want to say, who’s also a lawyer. These lawyers talking about accommodation issues. She has started talking about it a lot more and she was using the term immunodiverse, which I actually really like as a way of just saying that people with autoimmunity, people with all of these different chronic conditions that are unpredictable have very different accommodation needs than people who are predictably physically disabled, I’ll say. So if you need a ramp, great. But if you need to be able to miss class or miss work on an unpredictable schedule, what are the systems that we build for that? And so she just wrote a thing that was about asking for accommodations with a chronic illness and it covers some of this. Like, yeah, some people are going to think that you are trying to take advantage of them and that sucks.

Brianna: Yeah. And what was the word that that she used, immunodiverse?

Brianne: Yeah.

Brianna: That’s awesome. And that’s collecting all of us in one pot to make a common language. I like that a lot.

Brianne: It’s a good term. So I think if you look for it, I think she’s the only person using it right now. So if you google immunodiversity, you’ll probably find her Medium post about it. I think she posted on The Mighty too. But her writing about it anyway like, let’s start using this term so that we can come together and talk about what it all looks like.

Brianna: Excellent.

Brianne: Yes. Um, great. So to say that again. We’ve covered lots of things. Is there anything that is in your brain that has come up while you’ve been listening or while we’ve been talking or whatever that you wanted to get out there? It’s okay if no.

Brianna: I don’t know. As I was talking about the diagnosis portion of this, and a lot of things that I hear from the PMDD community especially, and people with other chronic illnesses. I think that there is power in self-diagnosis and if you believe that you have something and should be taken seriously, fighting to be taken seriously is worth it. It’s funny that I say it’s worth it right now because I’m still like, “Oh, is it?” Because I am still experimenting on myself basically with all these treatments and whatnot. But I think it is. I mean, if you’re striving for relief and while you’re working towards being taken seriously by medical professionals, you’re also taking that time and learning more about your body and how you live and what you do and you’re your own caretaker. And just hold onto your beliefs. I would like to be able to hold a person’s hand and be like, “Yes! Believe yourself and let’s get you help.” If I was healthy again, I would love to do that work for people because I think there’s a lot of people that just give up and say, “No one will believe me,” or “I’m not getting relief anyways, whatever. I’ll just stay sick and die.” But I just want people to hang on to hope.

Brianne: Yeah. Like if your body, if something feels wrong, once you realize that compared to other people. Like it probably is. And it depends, you might not be able to identify the details of it. With something like autoimmunity, you probably won’t be able to be like, “Hmm, my thyroid specifically is very upset today.” But fatigue is real and not everybody feels that way. Or brain fog. Not everybody feels that. And once you start to notice that, believing that it’s true and holding onto that for yourself… I totally agree. Have you ever watched the show Crazy Ex-Girlfriend?

Brianna: Yes. I love it!

Brianne: Okay. While you were talking about it way way earlier and then again now, I thought of the diagnosis song. Because she gets diagnosed with bipolar… Not bipolar, she gets diagnosed with borderline personality disorder. And as soon as she gets diagnosed, there’s a diagnosis song that’s about how happy she is to have a diagnosis. And it’s like that exact moment, which everybody should… it’s probably on youtube, just look up that moment because you’re like, “Oh yes! That’s it.” Like even if it doesn’t fix the problem, it gives it this legitimacy and it gives me a new lens for thinking of my body and my mental health as something that I can take care of. It totally shifts, even when it’s not curable.

Brianna: Exactly. Yeah. And just being your own advocate to get your diagnosis taken seriously is important work that’s worth it. Crazy Ex-Girlfriend is awesome too.

Brianne: Yeah. Also just a delightful show.

Brianna: That made me think of something. Oh, I wish this whole conversation was taking place on a better day and my cycle because I am so exhausted today and so brain foggy. And so it’s kind of ironic that it’s taking place right now. I feel like I’m going to listen back and be like, “Oh, Brianna.” [laughs]

Brianne: It’s okay. It’s just one of the things of talking about your health and committing to a time, even if you can’t predict how you will feel. That’s a part of it.

Brianna: Yeah, that’s how it goes.

Brianne: Well, thank you for taking the time to talk to me and for sharing it, even if today is a fatiguey day.

Brianna: Fatiguey, I like that word.

Brianne: It’s a real word for sure.

Brianna: Yeah. I have an Instagram too that I talk more about this, I’m trying to get more active and being outward about PMDD and chronic illness in general. It’s @awarenessmonth.briannalane.

Brianne: When I actually post it, because I will eventually share it on Instagram, I will tag you if you want to be tagged. So we could do that and people can search for you. Instagram has a pretty good search algorithm, but you will be tagged eventually on the Instagram post for it too so you’re findable.

Brianna: Excellent.

[guitar riff]

Thank you for listening to episode 21 of No End In Sight! You can find the instagram account that Brianna was talking about @awarenessmonth.briannalane, you can find this show on instagram @no.end.in.sight.pod, and you can find me on both instagram and twitter @bennessb.

In the next episode I’ll be talking to my first European guest about Grave’s Disease and the autoimmune protocol, so make sure you subscribe on iTunes or Stitcher or wherever you get your podcasts.

And don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s pretty small right now, but I’d love it to become a place where we share resources about building a business while prioritizing our health.

And finally:

This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. And I’ve been working on winter patterns but I guess it’s time to switch it up a little bit, so we’ll see what happens. I’d love it if you checked us out at digitalartisanal.com