Brianne talks hypermobility, mast cell disorders, and recontextualizing old experiences using new frameworks.TranscriptI’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness. Okay. Well, I’m really excited to finally be sharing a relatively recent interview. Today, No End In Sight’s brand new associate producer, Drew Maar is interviewing me about all of my health updates from this year. Plus lots of semi-related rambling and a bit about what to expect from upcoming podcast episodes. You’ll get to know more about Drew in episode 71, and you can expect to hear his voice more in future episodes as he takes on more production work.In this episode we talk a lot about hypermobility, mast cell disorders, PTSD, and the ongoing work of recontextualization as you find new frameworks for interpreting old symptoms. We also talk a bit about my TEDx talk, my storytelling anthology, and the #NEISVoid hashtag on twitter so I’ll include links to all of those in the show notes.We’re also refining how we do content notes for the show so you might see a few iterations of that before we settle on a style. If you have any feedback about what’s most helpful, we’d love to hear it!Today for content notes, you can expect conversations about alcohol at about 22 minutes, in 26 to 32 minutes, and 49 minutes. I start talking about a bike accident around 28 minutes, then that gets a bit gruesome in terms of wound description around the 30-minute mark. And shortly after that there was a description of violence and secondary trauma that continues to the 35-minute mark. Then from about 35 to 40 minutes, there was significant discussion about parent loss. We also talked briefly about restricted diets at 53 minutes in, and then about COVID and lockdown at about the 60 minute mark.Before we start, here’s my disclaimer: This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms. [guitar riff]Brianne: [Drew: [Brianne: [My mom used to dress me in bed, which is not normal. I don’t think for a prepubescent kid to not have that much energy. And I also was probably in a lot of pain. So when I was in third grade, my teacher called home to say, “Brianne keeps saying that she has a stomach ache or a headache, almost every day.What’s up with that? Is something going on?” And this is how the split happens. So both my parents were psychologists, which is not typical, probably for a lot of people. And they split up when I was pretty young when I was two or three years old. And then my stepmom was a social worker, and then my stepdad was in sales.So he’s on his own trajectory, but three of my four parents were mental health professionals, which is not normal.Drew: [Brianne: [and also I think I was pretty uncomfortable. And at that time is when they do standardized testing in Ontario, which is where I grew up in Canada.Drew: [Brianne: [Okay.Including gifted.And so I think it’s kind of a bell curve situation, even though obviously there’s a lot of bias that goes into testing and the construction of that bell curve. But they’re like, “Okay, kids who performed in a certain percentile on this standardized test get pulled out for more follow-up testing,” Including a lot of tests that I now know are used to test for other types of neurodivergence, like Raven’s Matrices and other stuff that eight year olds can do to test… I don’t know what they call it, but it’s probably like, “Innate intelligence,” which I put in air quotes because it’s a horribly flawed concept, but it’s checking for how your brain works, basically.Drew: [Brianne: [But anyway, so I went into gifted in fourth grade and this impacted, I think, a lot of things. It was a full-time program. It was one of four in my city. So…Drew: [Brianne: [Drew: [Brianne: [And ultimately he did, and I think the diagnoses made a big difference. So basically my dad in the 70s and 80s, we’re talking about, so… this is really important, actually. My dad who had gone to boarding school for high school. Drew: [Brianne: [So my dad came from a pretty affluent family. He was living with undiagnosed disability, but one of the realities of having a lot of privilege is that you also sometimes get a lot of invisible accommodations. Drew: [Brianne: [if you just, don’t take another French class ever,” kind of a lot of stuff like that.Drew: [Brianne: [I don’t know exactly what that looked like, but I know that he… when I was a kid, he was using early versions of text to speak software. Drew: [Brianne: [that was normal to me, that I had never really thought about.Drew: [Brianne: [Everyone’s smart in different ways,” trying to really aggressively push back on this narrative that’s like, “You’re special because you’re smart.” And… because he had been diagnosed with ADHD at that time, and he actually was a specialist who worked exclusively with kids with learning disabilities.So that was his entire practice when I was a kid.Drew: [Brianne: [The entire culture had ADHD coping mechanisms that were intentionally built-in, like lots of list-making, lots of schedule-making, all of this stuff. And they called it the A-thing, and it would be like, whenever in a conversation, someone said a non-sequitur, it would be like, “Oh, that’s an A-thing… what was the thread?Where did that come from?” So, meanwhile, I’m being put into a gifted program that I don’t know to label as special education, and also I’m being given all of these coping mechanisms for what’s being called… what my dad would call ADHD, but I was never evaluated for. And basically what I can see now from adulthood is that I got a lot, a lot, a lot of coping mechanisms.And invisible accommodations just built into my entire environment that I couldn’t see from a very young age.Drew: [Brianne: [Drew: [Brianne: [Drew: [Brianne: [the first time that I talked through it, so that’s some background about my health as a kid, which is that, I was probably… I mean, I was almost certainly neurodivergent, but I was in special ed. I was having a lot of body stuff, but all of a sudden, I switched to a much better environment. And so my body stuff just didn’t seem that critical or it wasn’t as disruptive.And I was in an environment where mental health was tricky. Drew: [Brianne: [So it wasn’t a big deal to go and look into stuff. So I got x-rays, they came back negative. I had a lot of phlegm when I was a kid, a lot of mucus. That was pretty gross. I got some kind of a GI tract investigation. Again, came back pretty normal, “We’re not worried.” When I was 11, this is actually the same week that I gotmy period is the first time that I, on a family hiking trip, kept lying down on the side of the trail and being completely unable to get up. And everybody in the environment thought that it was a mental health thing. So everybody is reading it as like, “What’s going on with Brianne? Why won’t she fight through it?Why won’t she just get up? We get it, you didn’t want to come on this hiking trip or whatever, but stop throwing this temper tantrum, you’re going to die in this crater or whatever. It’s going to be cold overnight.” And I have no idea what I was thinking at the time. I had no words for describing it.I didn’t have words for describing it for literal decades. And now I’m like, “That was orthostatic intolerance.”Drew: [Brianne: [And then I blacked out on the corner,” and I’ve blacked out a lot as a person before, but never like that. And I’m like, “That was POTS. That’s what that was.” Okay. So that’s a lot of the stuff…Drew: [Brianne: [Drew: [Brianne: [So I was a pretty flexible kid and thought of myself as a flexible kid and thought of myself as a kid who bruised easily and thought of myself as a kid who got sick easily. But none of those really… I think that was because I was benchmarking against the people around me, but… still those were within the normal standard deviation.Okay. So then I think the next major thing was that when I was 16, I got mono. So I was working at a summer camp, which are disgusting just everything about summer camps are disgusting. Drew: [Brianne: [Drew: [Brianne: [It was the fall break. So I missed four straight weeks of school. And my high school was self-paced. It was a completely experimental high school. It was a public school, free to attend. It was the only high school that offered gifted education. So it had four gifted… four middle schools with gifted program streaming into it. Plus it had all of the other alternative ed models that the city was messing with were at my high school.Or maybe there were two high schools. It doesn’t matter. It was self-paced is the takeaway that I was trying to say. So I’m really sick. I’m missing all of this school, and nobody’s talking about holding me back, nobody’s talking about truancy, nobody’s talking about any of that stuff.Honestly, the only thing that happened is that my guidance counselor, who was also incidentally, a friend of my mother’s was like, “Hey, do you want to study for the SATs during this break that you have?” Because we don’t have any, college level standardized testing in Canada. Drew: [Brianne: [So I was like, “Uh, sure.” So she gave me an SAT study guide, and I literally took the SATs because of that. Drew: [Brianne: [So I was watching Murder, She Wrote in syndication all day. And then maybe I think I got my parents to get The Sopranos on VHS from Blockbuster, like season by season so that I could watch them in order, which is very difficult to do without streaming television. So it was… I know that there are many people who have been sick constantly since then, but it was very different to be sick at homepre-internet.Drew: [Brianne: [And because I had pretty much always been dragging dysautonomia behind me and all of this shit behind me, I didn’t… I wasn’t like, “Oh, this mono was a turning point.” It was just like, “Cool. Here’s another thing that doesn’t work the way that it’s supposed to now.” So…Drew: [Brianne: [And I think I went to the resource room crying just from that conversation. Cause I was like, “I’m trying so hard.” You know, like, “I’m so sick.” Drew: [So to have a teacher suddenly not like you after years of maybe having so many teachers be like, “Oh. You know, Brianne is a joy to have in the classroom.” It’s a really big hit to your self esteem.Brianne: [So I ended up going to school in the States, specifically because I took the SATs. I would never have looked, but I have dual citizenship. And when I was looking, my grandpa who was in his 90s and who was from Iowa… he was like, “I think you should consider the college that I went to.” And he… my grandpa’s college stories are hilarious because he was… grew up on a farm in Iowa. I want to say that his mom was a German immigrant and maybe… I don’t know. I think his dad was just a longer ridiculous settler story, but my grandpa ends up going to college during the depression and he’s like, “I couldn’t pay tuition. So I rode the train to get there and dated the dean’s daughter so that I could pay tuition late.” I was just like, “What? What are you talking about? This is an absurd story in every way.” Anyway, I went there for some reason. I was like, “Well, I took the SATs. I might as well apply to American schools. And if I don’t get into any, then no big deal.” But I got in, I ended up going. Drew: [Brianne: [of Iowa.Drew: [Brianne: [Drew: [Brianne: [Drew: [Brianne: [Drew: [applied. Brianne: [I feel like a lot of writers that I like, so I always hear about it in that way. Yeah. But Iowa, so I went to college and my first year of college was… this should have been a sign, but also… I was 17 when I started school just cause when my birthday is and conflicting systems and stuff. I was 17 when I got to college, and I could tell my first… so first of all, my first year I drank a lot.I’d been drinking… I drank socially in high school, but not very often, and drank socially more in college. And first year, something that I started to notice but had no language for was that 1.) I had a lot of… what I would now describe as… I had an anxious attachment style, so I would get really worked up over communication stuff in a way that was unfamiliar.But also what I was more aware of was that this first year of college was… and I was living in the dorms was the first time that I had never felt like I was living in the middle of an active crisis. So at home that felt like an active crisis all the time. Partly because it felt like my mom wasnavigating an active crisis. Plus, now… probably because most of my friends were all undiagnosed neurodivergent or most of them were… a lot of them also had kind of complicated trauma things going on, and I’m not saying that to say that neurodivergence causes trauma, but I think we know anecdotally that there’s a pretty high crossover of navigating the world with an undiagnosed lens that you can’t see.So. Basically everything felt like active crisis all the time in high school, because everyone I knew was, my own home life was, and I didn’t have good language for that either because I grew up in the suburbs. So I grew up in a pretty… well, calling it financially stable would maybe be misleading, but I grew up in a relatively financially stable environment in the suburbs.And my closest friend growing up had a very financially insecure… they moved a lot. So I was really, really hyper aware of all of the privilege that I did have. But I did not have enough context to see that that doesn’t mean that trauma can’t happen. They can coexist.Drew: [Brianne: [Drew: [Brianne: [And then… God. Okay. I have to think through this timeline. So, and then, my mom went into remission, which was great. But during the same time my dad had had a head injury, and he was rapidly deteriorating in an unexplained way. And so about six months after my mom went into remission, my dad was diagnosed with Alzheimer’s, and my parents were divorced. So this is two separate units. So my dad was diagnosed with Alzheimer’s when I was 19. And that did not help in the scheme of being a functional person who knows how to cope with things. So I was like… sophomore year. Yeah, still drinking a lot. And then I started dating this guy who definitely also had a substance abuse problem and other stuff going on. And so the impact of that, which I will mention casually is that then my junior year… oh God, no, this is… okay. A bunch of things that I didn’t even think to talk about on the podcast, barely, but now play into this whole story are about to happen at once. My junior year of college, I was dating this guy who was… who had gone through a lot and was not handling it well is what I’ll say, and I… and a bunch of my friends were abroad and I fell off my bike. And this is my second bike accident that sent me to the hospital actually, so I fell off my bike and got a concussion when I was in high school. And I forgot a couple of days for a while. And this time I fell off my bike, and I think the pedal tore open my foot. Cause I was biking literally across the street, from one campus building to another campus building. Cause I immediately had to go… I was going from class, to eat, to work and I… there was just no time. So I was on my bike. And I went off of the sidewalk, and I tried to get back on and I tipped, I was barely moving and the pedal tore open the side of my foot, right below my ankle. And it was gross. and this is… maybe this has been talked about before, because actually Clare from… who was in a really early episode of the podcast, who went to college with me, was the first person that I saw. I was like, “I just fell off my bike. I haven’t looked at it yet. I have this problem where I faint.” Because I just… I had… okay. Drew: [Brianne: [Drew: [Brianne: [Drew: [Brianne: [So it was just a triangle of black flesh stitched to this other.Slightly dying flesh. So basically I had to have wound debridement surgery, which I’d never heard before, but it means like cleaning. They had to clean the wound because the first stitches had not worked, and nobody had any questions about that,I guess. They were like, “Yeah, I guess this happens sometimes. No thoughts.” So I had surgery… this is the only surgery I’ve ever had, actually. I went under, they cut away a bunch of tissue, restitched it. Blah, blah, blah. So that is relevant actually because now I know that poor wound healing is something that people should pay attention to,but at the time I was just like, “Well, this sucks. I have the worst luck. Why do I have such bad luck? What a mystery.” And so that Halloween… actually, no, this was the November. Extra details that nobody needs. My college had a party in November, like an annual all-campus party called Fetish, which was what you think. It was just Halloween II: Grosser Halloween, the way that people interpreted it.So I… and the weekend of… maybe I was using a wheelchair for Halloween, I was using a wheelchair for one of these parties. And then maybe this one… I think this is the first one where I was walking again after the surgery. So I was like, “I’m dressed up. I am participating in the party.” And unfortunately this guy that I had been dating, whohad a lot of shit going on… we’d just broken up, and he was not handling it well, and he had had too much to drink. And so I walked into the party and yeah, he immediately, after I walked into the room, he attacked somebody that he didn’t know, just spontaneously attacked somebody basically. And he… this is story is ludicrous.And he had been wearing a belt around his neck as part of his costume because his costume was autoerotic asphyxiation. And so he took the belt off, and that’s how he went after this guy. And so I walked into the room, this happened. I’d been drinking. He’d been drinking significantly more.We weren’t together either romantically or socially in this moment. I don’t know how that kind of timing worked out. But…Drew: [Brianne: [Drew: [Brianne: [Drew: [Brianne: [And then I went straight to grad school because basically… the way that I would describe it now is that basically I was in constant fight or flight mode all the time. And I was like, “How am I going to make decisions about my life? My dad is dying right now. I am not going to go home and go back to the restaurant job that I worked last summer.Not because restaurant jobs are bad, but because I will lose it on somebody. I am not in a place where I can go back and work full-time in the service industry without something really terrible happening, probably. So I’m going to just delay my return to the real world for a couple more years.”And so I applied to grad school, and I didn’t know what I wanted to do with my life at all. And I was like, “Well, when I was younger, I wanted to be an architect. I should do that.” So I applied to architecture school, and I got into Michigan, which was one of the… which is a good program. So I went, and I took out a bunch of loans because I was like, “This is what everybody does.Let’s get into tons of debt to get a graduate degree because of course the graduate degree will put me into a profession where I will earn money to pay back the debt.” The classic promise of education. And so while I was in grad school, my dad died, which was hard of course, and it also… the program itself was really intensive.So I now know that architecture is a really hazing kind of field like, needlessly. It has a lot of professors telling you, “You should never sleep again, if you really care about it.” And if you go into the profession, the intern years are very similar, and I don’t think that it’s appropriate or understandable in medicine, butin medicine, you’re like, “Well, maybe doctors need to perform in these extreme conditions in an emergency.” Which I do not mean to say flippantly because we’re living through that emergency now. And I don’t think training prepared anyone, and it’s showing us that it’s just hazing. And then in architecture, that excuse doesn’t exist because there’s no reason for do that Drew: [Brianne: [Drew: [Brianne: [And I don’t know how I was explaining that to myself. Honestly, I have no… I don’t… I think I was calling it all mental health. And one of the things about my mom’s mental health was that for a long time she would explain this kind of stuff and say that I had been possessed. She was like, “It’s not Brianne’s fault. Brianne’s possessed. She doesn’t mean it. We just have to…” it’s not really associated with theology, so I can’t explain it that way, but that’s in there. Like, “There’s some negative energy and if we can just get the negative energy out, then you’ll be able to go back and do your thing.” And so that was a really foundational concept. And also when I was little, cause I was in so much pain, I had been to see a chiropractor. I had seen multiple chiropractors, many times I had seen kind of miscellaneous other bodywork people. I had seen all of the stuff, all of the weird stuff, I had been doing. And so a lot of kind of woo-woo… I don’t even know to call it… was in this space and a lot of toxic positivity, basically. So I’m in Toronto, finally, I’m like 25. I got a job that started part-time and then it was at a coworking space. So I was working from home a little bit, and I was working in a coworking space a little bit, and I hadn’t even looked for architecture jobs because I was like, “I couldn’t hack the hours.” Me, a regular healthy person, who just can’t hack the hours and has to accept that about herself as a character flaw, question mark. It all makes sense so far, right? Drew: [Brianne: [And I talked about this a lot, I think in episode one, too. So because I was in a coworking space, I worked there for five years, and I could lie down all the time. I worked lying down at least 50% of the time, and it was no big deal. And this, I think about a lot, as it relates to gifted education, which is that coworking spaces are a really specific kind of space, targeting really specific kinds of people and companies and workers.And a lot of them are trying to mirror the environments of tech companies. So at the time that I started that job, one of my friends had just started working for Google. And so, I’ve been on the Google campus in San Francisco… not in San Francisco, but in Mountain View and been around there. I know what they’re up to and you can see it.You’re like, “Oh, you have snacks everywhere. You have healthy snacks and fun snacks. You have activities. You have massage.” You can tell what they’re doing, which is like, “You’re making your workers as comfortable as possible so that they never leave.” And coworking spaces aren’t quite the same, but they’re employing a lot of the same things to basically blur work-life boundaries.But the other impact of that is that they’re accommodating a lot of people without calling it that. So it was like, “Oh cool. I can…” for me, it was that I can lie down all the time. I think for a lot of people at Google, it’s like, “I don’t have to prepare my own food.” If I didn’t have to prepare my own food, my life would be a lot easier and I could work more.Drew: [Brianne: [I was now working a full-time job in a coworking space where there were lots of people and interesting young people who were doing things. So it was a really good transition time, and I ended up. Through the context of this coworking space, starting a writing group. Cause basically, what was happening at that point of the, “I don’t have any of the language for anything that’s going on,” is I woke up at And so it kind of evolved. And then we ended up starting an event in Toronto called Stories We Don’t Tell, which isn’t happening right now because of the pandemic, but was still… it’s still an entity. So it ran for five years. And basically, I was there for the first two. So I did a year of writing group and then two years of stories we don’t tell. And while I was doing that, because I was one of the co-founders, I told a story almost every month because we’d have to round out the lineup. So we were bringing… new people came in, new people wanted to participate, but new people are not used to turning around really personal stories in two weeks. So we were just trying to pad it until people were ready, and so I did something almost every week. No, sorry. Almost every month for two years, I did at least 15 to 20 events, and it was therapy. That wasn’t the point, but I had… I’ve glossed over a couple other times that I went to try to see therapists, and I just had the same outcome of me being like, “I think I’m a mess.” And them being like, “Good for you.” This isn’t You know, I’d be like, “I think I need to deal with this.” And they’d be like, “Yeah! Right.” I’d be like, “Okay, if this is what therapy is,” and I know it isn’t always, but like, “if this is what therapy is, I do not need to pay for it. I’m sorry.” And so I think for me, I stumbled onto this thing that had a really, really profound effect on my trauma processing that I didn’t… that wasn’t intentional, and that I wasn’t even fully aware of at the time, but… oh, I also, at the same time, right after I moved to Toronto, I went no-contact with my mom. So Will and I broke up, I stopped talking to my mom, and I was in this new job doing… in this new context. So I was like, “Okay, I’m just gonna get through it.” And the idea… this was the intention of the Stories We Don’t Tell, but it was like, once you’ve talked about some of this stuff in front of a room full of people, and the room… the audience is designed in such a way that, you can see people you’re not lit out, or whatever, but you realize that afterwards you’re still a person and nobody hates you. And it has this really good feedback effect. If some of the gremlins in your brain tell you that talking about the tough stuff will make everybody hate you because it’ll like… you’re too much. So I don’t know, over the course of like three years, it had a huge impact on all of that stuff. And one of the biggest things is even… with alcohol, so I did not make any conscious effort to change anything. I think because I was still functioning enough that it wasn’t the biggest fire. But one of the impacts of just doing this is I was still drinking socially all the time, and I almost never blacked out anymore. And I was like, “That’s weird. I can tell that I’m doing better, but why would that be the case?” I have a few ideas, but I was just kind of aware of it. And I was like, ” Okay.” Maybe previously I had been like, “Cool, I need to stop that completely.” And substances are so complicated because we all have different relationships to them. But for me, I was like, “Oh, after a couple of years, for me, I can see really clearly that alcohol wasn’t the problem.” Something else was the problem. And when I drank, I, of course, it’s a coping mechanism. I’m numbing. So whatever’s going on in there. I’m gesturing vaguely at my brain gremlins take over. So that was… so this is when I was like 27, 28. This is the pinnacle of my most functional time. So all of a sudden my mental health is really great. I still don’t have language for why it may have improved or why it may have been suffering previously, but I can just tell. And I’m really busy. I’ve become more active. Some of that was also coping mechanisms. I was like, “Okay, I have to get, I have to find ways to get myself out of the house.” I’m a routine person. I was volunteering. I was doing a lot, honestly. I was doing a lot, and whenever I thought about it, I had crushing anxiety about when there would be time for rest in my week. But I was like, “Hmm, that’s weird. Maybe other people are also burning out.” But everyone else was fine. So that was around 27 or 28. And then that’s when… I think the next catalyst is that I moved into a moldy apartment. So I was living in a basement that was fine. A basement with no windows in the main living area at all, and one small window in my bedroom that I almost certainly could not have escaped through and was definitely an illegal apartment. Yep, great times. In that apartment, I wasn’t really aware of anything, and I moved into a new above-ground apartment. It was bigger. Everything about it was great. And there was a gross patch on the bathroom wall that was obviously mold that had been painted over, but I was like, “Whatever, this is what it’s like to,” I lived still in Toronto. So, “This is what it’s like to live in an apartment in a city,” if you can’t afford the fanciest condos available, new construction, which frankly also, I think are probably environmental pits a lot of the time, but I was like, “No big deal. If it was a problem, someone would have done something about it already.” Like, I don’t know what I thought. but I got eczema right away. And so, I talk a lot about this in the episode one, too, but the eczema was the first thing for me that was the beginning of the cannot-come-back-from decline, as opposed to the ignore-everything-and-keep-going, which had been working for me so far, as far as these things go. With at least three periods of spending many weeks in bed that I’m not thinking of as a pattern. So I did the eczema, and then I changed my diet. Which I talked about a lot. I did the Candida Diet. It made my eczema go away, but removing alcohol, removing caffeine, removing sugar from my system was a hard hit. And so I couldn’t push through anymore. It was like I did the diet, the eczema went away. I started reverting to what is like… I just saw the word chronotype. Did you see this floating around Twitter? The concept of chronotypes, so it’s basically like there’s a natural deviation in our, what’s the word? Our rhythms when we… circadian rhythms. And those are chronotypes. So my natural chronotype basically is go to bed at Drew: [Brianne: [So far… the biggest thing that I’m aware of now is when I have really bad fatigue, when I’m here, it’s all dysautonomia fatigue, which is like orthostatic intolerance. And it’s not “my brain is filled with bees and doesn’t work” fatigue, which I’ve now associated with a histamine reaction. Because when I lived in the mold house, I couldn’t… my brain was filled with bees all the time. And I just called that fatigue. Now I’m like, “Oh, that’s a different thing.” Okay. So then in Massachusetts, it was the first time that I ever got real medical care, I would say, honestly, despite this story being entirely about pursuing medical care. And so in episode 50, that’s all I talk about, but I found out I have cervical stenosis. I found out I have small fiber neuropathy. I found out I have… I confirmed that I have POTS. I already knew at that point and that… so that was at this time last year, which is when that episode recorded. So good, we’ve been talking for an hour, and I have just brought us up to the last recorded part of the story. And so what has happened since then is that I went to see a physiatrist, to ask about my cervical stenosis and she was just like, “If you want pain management, you’re weak. And if you don’t want pain management there’s nothing else we can do for you,” she didn’t say it in those words. But that was the takeaway because I was like, “I just want to know if this is degenerative, what I should keep an eye on, and if there’s like any thing that I could be doing?” She’s like, ‘Well, here’s some really terrifying side-effects of pain management that would make your life worse. If you want to try it.” Drew: [Brianne: [And two, I’m not, and I didn’t ask about it, so I don’t know why you went there.” Both sides aren’t great. Okay. So then… so I saw her blah, blah, blah, and so that was kind of a dead end. And I was just like, “You know what? I’m gonna wait until next summer, and just try to decide what to do because I’m not doing great, but I don’t have an overarching diagnosis.And I just don’t know how to plan for the future.” Basically, I’m avoiding mold. I eat a weird diet. I rest a lot. And I was pretty functional last fall. I talked about this. I would go… I was going to the gym to use the recumbent bike, so that’s pretty good. Just leaving the house, you know?Drew: [Brianne: [And so the way that that looked for me is that I was stressed and hyper functioning at the beginning, being like, “Okay, cool. I’ll just stay informed and make sure that I can help people and make the right choices.” And what happened for me in March is that the pattern of being like, “I have this underlying health problem that I don’t know what it is, and so I have to make different risk assessments than other people.” And then other people being like, “Your risk assessments aren’t necessary,” turned out to be hugely triggering, and I don’t think I’m… I don’t know if I’m explaining the dynamic well, but hopefully most people know kind of what I mean. It’s just, people want to blur over health boundaries for most of us, in our regular lives, and all of a sudden the entire media narrative is about that. It’s like about how we’re disposable, but also how us wanting to take precautions was offensive to other people. And so at this point, at the age of 33, I was like, “Oh, I notice that I am behaving as if I’m in fight or flight mode. I’m in a trauma activation cycle. My amygdala is firing.” That’s the wrong word to use, but that’s fine. And so I was like, “Okay, just like, breathe, wait it out. You know what it is.” And okay, this is… there’s a couple of steps to this. So the first thing is that Obviously, this was not a new feeling. I’ve had it. And I used to have it all the time. But when I lived that way all the time, I didn’t identify it because it was all the time. And when it started to come down, that was one of the things that I noticed was like, when I was doing Stories We Don’t Tell, still living in Toronto, blah, blah, blah. And I was starting to stabilize like my mental health was starting to stabilize. I was like, whenever I hear from my mom, so if she texts me or if she emails me and we’d been no-contact but still some, things happen. I would immediately. switch realities is the only way I knew how to describe it at that time. So I’d see my mom’s name in my inbox and the rest of the day, I thought that all of my friends hated me. I thought everything, whole thing it’d be like, Drew: [Brianne: [Drew: [that I would be appropriating those terms. I recently was having just basically the movie version of a flashback, and I turned to Margo and I was like, “I’m having forced recaps.”Brianne: [Drew: [Invalidating language Brianne: [Drew: [Brianne: [and they’re exaggerating by using these health or mental health terms as a euphemism. Yeah. Something like that, right?Drew: [Brianne: [It’s really different than when someone is literally like, “I haven’t been here in a long time and I’m having flashbacks to other times that I’ve been here.” Memory.Drew: [And then there’s just a narrative movie where a person just goes back into their childhood home and remembers something, and we are shown this memory.Brianne: [Drew: [Brianne: [Somehow but yeah, so I’m like, “Right. So it’s not inappropriate to use that language for these things.”Drew: [Brianne: [And then on Easter weekend, Adam’s family did… they normally have an Easter dinner together. And so they did a call. They did a Zoom call, and I didn’t sleep very well the night before, like really poorly. And I knew… so we had already made it clear that I might not be able to join because I was like, “I can’t do group chats in this state, but I’ll try to say ‘hi.'” And then I slept really poorly. So I really knew that I shouldn’t have done it, but I hadn’t had major fallout from something like this before. So I was like, “You know what, I’m going to go on the call for like five minutes just to say ‘hi’ to everybody, and then I’ll go lie down.” And that was a really, really big mistake. So. I… we were on a couch. Adam had the computer. I was just sitting beside him, and I was kind of slouched down, and then I started slouching more, and then I started twitching, and then I started twitching a lot. And I’m doing the thing that I always do when my brain’s not working, which is like, “Just be casual.” I don’t have enough brain function to think through what I’m supposed to do or set boundaries. So apparently my brain defaults to just like, “Get as comfortable as possible and wait for it to end.” Which is a bad strategy. So after a couple of minutes, I was really just in bad shape, twitching a lot. So I went and laid down on the bed and just kind of listened, and I have not recovered from that episode. So… and I think using the word twitching overstates it, I don’t know. I think they’re fasciculations… I don’t even know if that’s how you pronounce it, but it’s involuntary movement. For me, it’s like my whole torso was shaking uncontrollably basically, and I could feel it as exhaustion and sensory overload gets much worse. So I think that was also… it was like trying to listen and parse a call in that state was extremely unwise. Yeah. So I… that night I tried… I didn’t know that I had made a huge mistake yet. I thought I had made a regular mistake. That night, I tried to brush my teeth, and I couldn’t stand up straight because I felt like I had… I was like a dog wagging my tail. My entire torso was involuntarily just wagging back and forth. I was like, “That’s not normal.” And now in retrospect, I’m like, “Oh, both of my SI joints were out.” What was happening is that neither of my SI joints were doing… and none of the muscles that are supposed to support… just that whole system was breaking down. So I was wobbling from the SI joints. And then, so I tried to brush my teeth, couldn’t do it standing, switched to brushing my teeth in bed immediately, which I hadn’t needed to do in quite a while. Was like… the next morning I was like, “Cool, I’ll sleep it off.” So the next morning I get up and try to go about my normal life, which is not a healthy person’s normal life, but there’s… I’ve gotten some amount of function back compared to other situations. So I get up and go downstairs to make my coffee, and that was a mistake too. I don’t get all the way through it, I think or if I did, I was twitching really heavily at the end. And I was like, “That’s not safe for me anymore because if I’m pushing my body to failure then I’m going to keep failing.” So I basically, not that I had a choice really, but put myself on bed rest for… until that got better and it hasn’t. So I’m… okay, that’s… it’s improved. So I was on bedrest and in that time, my SI joints were a mess, and they were also in a lot of pain, and I was heating them a lot. And I rolled over in my sleep one night and I heard my shoulder pop, and my shoulder already is not a happy shoulder. It’s been an unhappy shoulder for years. It’s really painful when I drive, when my elbow is not supported, because it just feels like it’s hanging from the joint. And as I’m saying this now, I’m like, “Huh, what an interesting combination of words that…” I was literally making the podcast as I was describing myself that way, me, interviewing many hypermobile people about their ligament laxity, me, with my hangy shoulder, “Huh. What a strange unrelated issue that maybe I’ll mention to someone someday.” So I dislocated my shoulder, but I didn’t know because I’d been living with a lot of shoulder pain for years. But it was worse, and it popped back in a couple of days later, at which point I was like, “Oh, that was a dislocation.” And because of Twitter, of course, I had been talking more about it. I’d been like, “Oh, a lot of people who are hypermobile don’t know that they’re hypermobile. It’s actually not obvious.” It’s not obvious. You could even be having subluxations and not realizing it. And I think, tell me if you relate to this, but when I had heard people describing these before both in interviews and on Twitter, because people talk about it on Twitter all the time, I was like, “Oh, that sounds like a really serious thing that happens to other people you’re nodding. Drew: [Brianne: [And I remembered that when I was in high school… this is such a me story. So I laugh with my mouth really wide open all the time. And I used to get made fun of about that in high school, which is pretty benign, but I covered my mouth when I laughed. And so I was laughing, which meant that I was shaking, and I went to cover my mouth, and I just hit myself in the face.And presumably subluxed my jaw, but I was like, “Oh, it feels like my jaw is out of the joint, but if it were dislocated, I would know.” So I’m just running around telling everybody that my jaw is out of alignment, but it’s no big deal cause I’m, in high school, already great at that. And so then I started to be like, like, “Ohhhhhh. Oh.” There’s a couple of Twitter conversations where I’m like, “Ohhhh.”And then, this was my shoulder. I’m like, “Oh my God.” I’ve had ligament laxity in my shoulder for quite a while, and my shoulder is much worse than any of my other joints, which the only thing that I can connect it to is probably water polo because I played goalie and I played six or seven seasons.And I wasn’t good to be clear. I was a bad athlete, but I had a good throwing arm. And I’m like, “Oh, I bet throwing a lot… it’s not heavy, but the action of throwing a ball 20 meters all the time is probably…” I was probably hyperextending my shoulder all the time. That’s probably why I was good at it.And I probably have, ongoing use issue… repetitive, whatever, repetitive motion injury? I forget. I feel like it doesn’t matter.Drew: [Brianne: [And I was just getting nowhere with doctors, and my doctor was being really unhelpful. And I talked about this in episode one. Somebody in my alumni group had been like, “My sister was just diagnosed with EDS. You should look into that. Could that be it? She had a really frustrating experience too.”So I Google it and I probably ended up on the Mayo clinic website… you know, it’s a pretty generic… and I read it and some of them, I was like, “Huh, maybe.” But not enough of them. And so many of them are subjective, right? Like, “Do you have stretchy skin? Do you have a velvety skin?” And you’re like, “I don’t… I have this skin that I’ve had my whole life.I don’t know what skin supposed to feel like.” But then, and this is also… so I’ve read this like two years ago. I’m like, “Maybe, but probably not.” And then I’m like, “Oh, maybe I am hypermobile.” Because of this history of flexibility, because of these injuries, that was probably a dislocation, but I don’t want to call it that because am I appropriating dislocation language? Sincerely. and so I started looking at it more seriously. At some point I checked my Beighton score, which I’d known about the Beighton scale for at least two years at this point. Finally check it. And I never checked because I can’t touch the floor because my hamstrings are so tight. So I was like, “Well, I can’t do that one.So if I can’t do that one, why would I check any of the other ones?” Which is really not logical. So anyway, I have a Beighton score of five, which is the lowest, qualifying score for my age now because I can touch both my wrists with my thumbs, I can… both my elbows bend backwards, one of my knees bends backwards,one of the other one-offs, I forget. And I have the little heel papules, some of the smaller stuff. Plus, poor wound healing, I know now about. Plus diagnosed POTS, plus small fiber neuropathy is also often comorbid with EDS. So I… and then another thing that happened was that a couple people on Twitter were passing aroundother diagnostic lists that some of their specialists had used. So we should just talk about hypermobility right now, because I feel like there’s a lot of stuff that people probably don’t know. So, okay. EDS is Ehlers-Danlos syndrome, which is a genetic connective tissue disorder where, presumably faulty collagen, and then maybe some other stuff.But that’s what we know.Drew: [Brianne: [Drew: [So often when you go to a doctor and you’re like, “Hello, I think I have EDS.” They’re like, “No, you couldn’t possibly have that because that’s a rare disease.” So it’s sort of a self-fulfilling prophecy.Brianne: [I’m gonna put that in air quotes because we know that the research is still really missing a lot, but… was the actual physical hypermobility. So the biggest problem was the joint… was subluxations and dislocations as a result of the disordered connective tissue. But that was the biggest problem that people were having,and so that patient population they’re trying to identify a hyper… a gene variant for the hypermobile type. Drew: [Brianne: [Drew: [Brianne: [but the idea is that people who don’t meet the criteria, but are obviously hyper mobile and would have met the criteria before, get diagnosed with something called hypermobility spectrum disorder.So that is happening, and it has caused a lot of upheaval in the patient community because some people had already been diagnosed, and they no longer met the criteria. Some people… and so… all of this context is relevant to both of us for the same reason, but I’ll get to that in a second.So hopefully that all makes sense, so I already knew that. That the criteria to get diagnosed with hypermobile EDS is pretty limited, and I had a high enough Beighton score. And I have… I do, in fact, have subluxations and dislocations that I hadn’t really been registering before.Certainly I haven’t had a ton of dislocation. Some people have really… like you say, some people have dislocations that they can’t miss, but subluxations, you can miss. If you’ve had them forever, you think that that’s just what a body does and Drew: [Brianne: [So I first went to my PCP. And I was like, “Hello. As you know, I have POTS and small fiber neuropathy, and we’ve ruled out a bunch of stuff because all my blood work comes back normal. I want to look into connective tissue disorders because I think I dislocated my shoulder in March. There’s a bunch of reasons.” So she was like, “Cool, I’ll refer you to a rheumatologist.” And I already knew that that was not necessarily a great plan, but I was like, “I want to see the local rheumatologist because. I want to know, like, if she is good, I don’t want to not know that.” But in my head I was like, “And also I’m going to intend to ask my neurologist for a referral to a geneticist if this doesn’t work out.” So I went to the rheumatologist in July, and that was also tele-health. So she didn’t physically examine me, but I just described it. And I said the same thing, “I have POTS. I have small fiber neuropathy. I have… I just dislocated my shoulder. I’m giving a different version of my history because I know what I want to talk about with you.” And I was… and my SI joints had been bugging me a lot. So I talked about that. And so she’s like, “Okay, well, I do want to rule out arthritis,” which I want to say at this point that I have probably been screened for rheumatoid arthritis almost every year for the last five years. I know that it exists in a seronegative form, but it just doesn’t make sense for what’s going on. But anyway, she’s like, “Okay, so first I want to just check for all of this stuff, and then if that comes back negative, then you’re good.” So I was like, “Great. You’re my favorite kind of doctor.” And because I am lucky enough to be in a location and situation where I knew that I’d be able to ask for another referral, I was like, “I’m not even gonna fight with her.” Being in a position where you don’t have to fight with doctors is one of the best things ever. And I have not been in that position often before, but I was like, “Cool. Let’s just test for what you know about, because you’re not going to be able to treat anything else anyway.” So I got blood tests. I got x-rays done on my SI joints in July. And this is actually my first… maybe my first trip out of the house during the pandemic, because I became bedbound almost exactly the same time that my state went into lockdown. So I kind of… the logistics of lockdown weren’t affecting me as much because I was not functional. So I did that, and it was actually really well done from a lockdown perspective. The blood draw was on the porch of my doctor’s office, and you wait in the car. All of that stuff. That was good. But anyway, I don’t have arthritis, which I already knew and I don’t have, AS, which is what I think she was screening me for, ankylosing spondylitis, which definitely manifests in the lower back in the SI joints. So, yes, I understand why I was screened for it. Happy to be screened for it. Still don’t have it, and she didn’t make a follow-up appointment at all. Just sent, you know, same deal, canned message with the x-rays, “Looks good!” And. If I were not my current self with the information that I currently have, I would have felt exactly the same way that I felt three years ago when this happened to me, which is like, “What the hell am I supposed to do now? What am I supposed to ask for? I’m not fine. This isn’t fine.” But because I… because of, I guess everything that I’ve learned over the last couple of years, especially through the podcast, I then just went to my neurologist who also has been really great about referrals and made the exact same case. And my neurologist is the person who did the initial testing that picked up my POTS, picked up my small fiber neuropathy. And he’s a very curious doctor, which is rare. He, on the one hand had been like, “Yeah, these are pretty subtle and, it might take us a while to figure out what’s wrong because you might not meet any of the diagnostic thresholds, but of course we would want to monitor and figure out what’s going on.” Drew: [Brianne: [Okay. And the one more thing before that is. I have started to leave the bed again, and I’m still brushing my teeth in bed. The end of the day is tough, but the beginning of the day I was starting to wake up a little bit more refreshed, and I started to go on short walks down to the end of my street and back cause that felt good. And so I was like, “Okay, if hypermobility is in the mix, I know that physical therapy is really important because you actually have to learn how to move your body, which sounds terrible.” You have to understand the safe range of motion, and you have to learn how to stay within it. And you probably have weird… your muscles may be in spasm all the time to protect your joints. So I kind of knew that kind of stuff. And I was like, “I think I’m at the place where I need to look at that now, because I feel like I’m recovering, at least from the crash that I had and whatever my new baseline is, is probably going to depend heavily on PT.” So I bought Kevin Muldowney’s book, which is what people recommend the most. It’s called Living Well with Ehlers-Danlos syndrome or something like that. And it’s a PDF that he sells on his website, but I bought it because basically the Muldowney protocol is what everybody recommends within the EDS community as like, “This is the best plan to try.” It’s good to do it with a physical therapist, but… because of course it is, but if you want to learn about it, it’s really focused on starting with your core muscles, because if your core collapses, everything else is going to fall apart. So it basically starts doing pelvic tilts, I think. Pelvic, pelvic, pelvic, and then eventually core. And then it kind of radiates out from there because that is a good strategy for people who have been mostly bed-bound with connective tissue disorders. Which I want to be super clear that it also is not the same as saying graded exercise therapy for ME. This is not that kind of a protocol. So I bought it and it’s like, “We really recommend that you work with our physical therapist locally, if you’re able to. Give them this book.” And I was like, “That sounds like a lot, but I wonder if there’s somebody near…” because I live in a small town, and there’s a pandemic happening. I was like, “I wonder if there’s a personal trainer locally or just somebody who is completely local that I could be like, ‘Will you read this book? And do a couple of workouts with me because I just don’t know if I’m even engaging the right muscles.'” My awareness of my body is zero. So I did that and it makes that recommendation. Then I started Googling, and I think this was in September, maybe August. As it turned out, there’s a person who specializes in pelvic floor physical therapy in my region who also specializes in hypermobility. Drew: [Brianne: [But it turns out that this woman who is hypermobile herself, her kids are hypermobile, et cetera. And she became a physical therapist. And she was running a clinic out of an office, and she closed the office at the beginning of lockdown. And started seeing a few patients on her porch of her house.Cause she… I live in a rural area. She lives in a rural area. You’re just looking out at some trees. She has some goats. She has some chickens. She gave me eggs once. It’s ridiculous. So yeah, I was like, “Okay, I don’t know for sure that I’m hypermobile at this point because literally nobody’s examined me.”And so this is what I mean about the self-diagnosis thing. So I’m feeling, “Okay. Well, I have a Beighton score of five, and I’m pretty sure I dislocated my shoulder in March and I have POTS and, and, and, but I don’t want to say that I have it if I don’t have it.” I have a big… and it’s not in a policing way.This is… cause you just kind of said something… not just, you said something similar. It’s not like, I don’t want other people to say it. It’s like, I’m so scared that my instincts on this are wrong. That I don’t want to say it until I’m sure. I don’t think that other people’s instincts are necessarily bad.I think that self-diagnosis is good and important and anecdotally very effective. However, I don’t trust my own… I don’t know, interpretation of my body or whatever.Drew: [Brianne: [Drew: [Brianne: [Drew: [Brianne: [And so the notion that there could be names for a lot of this stuff, and that they could be actual medical things is really… I don’t even know what the word is for that feeling. Cause it’s so disorienting, and obviously the process of recontextualizing and looking back and giving it a new name is ongoing and has been going for quite a while, but it’s still… that’s actually part of it.Is that, okay, if this is called hypermobility and if that means that I have a connective tissue disorder that I’ve had my entire life, which it’s possible that it doesn’t, but it probably does, contextually. Then that means that all of the people around me, most of my life who did care about me and thought that they were acting in my best interest weren’t, and that’s hard to swallow.So it kind of feels like… yeah, naming it and then… naming it means that you have to digest all of the implications of what that name will tell you. And it’s not like, “Oh, I don’t want to be hypermobile.” It’s just like, “Oh, I don’t… I’ve been living this… under the framework that whatever’s going on with my bodyisn’t a big deal. And if it is a big deal, that’s going to break my framework pretty bad.”Drew: [Brianne: [I don’t think it’s easier in that way. And can I put a pin in that? Because I feel like the experience that I actually have with the doctor is relevant to this question. Drew: [Brianne: [And so I do know that my dad’s health profile really strongly suggests that this might’ve been in play for him because he needed ankle braces to… he played hockey. So he needed an ankle braces to skate, which isn’t typical. He wore a leg brace for the later years, which I think was an ACL injury maybe, which happens, but weird in conjunction with everything else, all of his teeth were falling apart, which I’ve since learned is also a common… dental stuff. He had really pretty severe environmental allergies. He couldn’t deal with scents. He needed scent-free spaces, which is pretty suggestive of mast cell. His health got a little bit better when my step-mom put him gluten-free when he was… already had dementia again. Just all of these… stuff that, in the pattern language that I think patients tend to look at when we talk to each other, and like, “Oh, you’re in the space. You have signs of MCAS you have kind of… He had GI problems. He had blah, blah, blah, blah, blah.” So on the other forms that I’ve been looking at that are like, “Here’s some of the co-morbidities to consider.” I was like, “There’s a lot of relevant stuff here. It would not surprise me if this were genetic.” And he also… so he died with Alzheimer’s, but that’s a probable diagnosis. It’s a clinical diagnosis. At the time there weren’t any… I think there are now, but there weren’t any lab tests that would confirm it. So it was like, “Well, we’ve ruled out everything else. So this is what we call this type of dementia is early onset Alzheimer’s,” and he was in his fifties, which also isn’t typical. And so… there was one more thing I wanted to say about that, but it’s gone now. So, I had talked through that… oh! He had something called alien arm syndrome, which is that… so he had, had a tremor in his hand from when I was really young. And his hand kind of dance on the couch beside him. And as he got sicker that got worse till his whole arm was literally moving all over, and I’ve Googled this to make sure that’s the right name. It is. It’s sometimes called Dr. Strangelove syndrome because in the movie Dr. Strangelove, that’s his affectation, but there is also a real syndrome. I don’t know why they’ve been connected in that way, but I thought that was strange. Anyway so he had some neurological stuff going on, basically. And so I’m like, “This is really suggestive to me that what’s going on might be genetic. Even if our individual issues are different.” And the way that I stand normally, allegedly, I think I tilt my pelvis forward. My mom’s always commented on it, and she’s always like, “You stand just like your dad does.” And I’m like, “Mm, do we both stand like people who have lax ligaments? Because that’s what I’m starting to think.” Drew: [Brianne: [Nothing. There’s nothing in my chart. There’s no summary of that appointment at all. So. Now I’m like, “Cool. What do I say? How do I describe this?” One, a hypermobility syndrome isn’t anything, first of all. That’s just like you agreed that I’m hypermobile, which is helpful, which sometimes historically would be diagnosed as benign hypermobility, but that is kind of being debunked as a concept. And so then that was replaced, I think, by joint hypermobility syndrome, which has also been retired as a diagnosis. So I think that the only actual diagnosis that that could refer to is hypomobility spectrum disorder, but of course, nobody said that or wrote that down. And of course I also already had all of the context about the diagnostic crap to know that hypermobility spectrum disorder basically means, “Maybe the type of EDS that we’re looking for a genetic variant for, maybe something else that we’re also trying to identify, but we haven’t fully found the strains yet, but you’re in this family of problems basically.” And so I’ve been thinking a lot about… what does it mean to have a doctor tell you sort of. Does it confirm anything? Would it have been more affirming if she had been like,”Yes, you have hypermobile EDS.” And I don’t know cause obviously that wasn’t my experience, but it was confirmed. It was confirmed that I’m in the orbit of whatever planet we’re all orbiting together of like mast cell problems, dysautonomia, sometimes auto immunity, connective tissue disorder, but not in any way where… it’s not on my chart. My PCP might add it to my chart cause she does that. But not all doctors would. It’s an exact example of the kind of medical magic that happens where there’s no paper trail. And so there’s no accountability. And so there’s no real plan, but she also did say, which I thought was helpful and more than a lot of doctors do in this situation, she was like, “Because the gene hasn’t been identified, we don’t have any targeted treatments and we don’t have any targeted treatments for any of the other types of EDS right now, anyway. So the main way to deal with either hypermobile EDS or any other type of hypermobility is find a physiatrist who can tell you how to make your joints… who can help you put your body back together.” And I was like, “Well, I just started PT for that.” So I’m already doing the one thing, but I think having a doctor tell you that it’s the thing… I don’t know. There’s like… I feel like so much more of the process of diagnosis is getting the information and then internalizing the information so that you actually know… cause it rearranges how you interpret the feedback from your own body. And so I kind of… the way that I think about it now, which might not be universal or even true in the future, is that with self-diagnosis I’m like,”Ookay, I’ve been ruminating on this set of experiences for a long time. And I’ve been circling in around what is more precise language? What is a more precise understanding?” So that I can manage it better, ideally, but even if I can’t manage it better, understanding it better kind of does that automatically a little, I think. And so either you’re already circling that space where you think you know what’s going on and you go to a specialist and they’re like, “Yep.” And then you’re like, “Cool. I was right. I guess I’ll go back to all the emotional work of processing this,” or they’re like, “Nope.” And you’re like, “Were they correct?” Because sometimes they are. And sometimes they aren’t. And so maybe you’re back into self-diagnosis world. So that happens a lot with hypermobility. That doctor, just as much could have said, “You don’t meet the criteria for hypermobile EDS, so nothing is wrong with you.” And people get that a lot. They’ll be like, “No, you don’t… there’s nothing going on here.” And so you can think that that’s what’s going on and go to the doctor and have the doctor tell you it’s nothing. And then you have to leave and be like, “Is that true? Is the doctor correct? That my assessment was wrong,” this is going to get real double negative, “Or is the doctor wrong? And I need to find another doctor who can assess me more accurately.” And I hate that that’s even a question, but these interviews have taught me that that is a very necessary question. And it’s not just getting a second opinion. It’s your life. So… and then the other outcome is that you go to a doctor, not knowing… without an inkling of what you have and they tell you, and then I feel like it’s… the process is probably really similar, but you’re like, “Okay, cool. I have a name and some language to learn about. And now I have to go and sit with my body and still internalize this information to see if it applies.” It’s… I dunno, the doctor’s role in this whole thing is interesting. Cause I was misdiagnosed with PCOS. I also talk about this in episode one. I was misdiagnosed with PCOS, and I didn’t… I wasn’t looking for it. I didn’t expect it. And she was like, “Yeah, this that’s what this is. You have it.” And I learned a ton about it and resolved the symptoms, not through the kind of treatment recommended for it and was like, “Well, I no longer meet these criteria. So what does that mean? Do I have it? I don’t know.” So that was a lot of anecdote to kind of get to the… more or less the present. And also circle back to your question around internal validity of diagnosis, sort of. Does that get at that? Drew: [And I’ve heard a lot of stories on the pod of of people saying, “Oh, I was initially misdiagnosed with this mysterious illness, and then I got a second opinion. And now I’m being told that I have this mysterious illness and I identify that way.” And I’m also just curious about what goes into that and how people think… how people decide which doctor was right.Brianne: [Drew: [Brianne: [Drew: [Brianne: [“And if they’re not friendly to self-diagnosis and/or I don’t have a self-diagnosis, there’s nowhere to go.” There’s no one to talk to. And then one of the weirder things with that is that people are misdiagnosed so often that… cause I, you know, I don’t know, I probably subscribed to the PCOS subreddit or something. It wasn’t my full identity at that time, but I was definitely like, “Okay, maybe this is the explanation. And so, this is a thing I’m going to talk to other people about it. I’m going to learn about it.” And then as it… I didn’t relate to anybody there because none of my symptoms were similar.It was a bad diagnosis for me. And so that part was clear, but it was like, “I’m gravitating out of that group but now I have no community around my health at all, which is not great.” Because it felt at the time, and so… I don’t know, like four or five years ago, this was probably 2015, that most con most communities relied on that.And so I also think that there’s an element that identifying with your diagnosis, not in the way where healthy people accuse us of doing that, but in the way that you’re talking about, identifying with your diagnosis is really encouraged within a lot of communities and within the medical system, because your diagnosis is your key to so many of those things.Drew: [I’m just sort of gently dipping my toes in because like, I said, I don’t have issues with self-diagnosis, but I know that that’s something that Margo has a lot of issues around. And I actually, I told him that I was going to be interviewing you and he was like, ask her about self-diagnosis and I was like, okay. Yeah. but it’s really hard for him because he’s like, “I don’t know what I have. I could very well have this thing. I could very well have this other thing.” So it’s not even, “Is this group open to like, self-diagnosis?” It’s like, “Can I be in this group if I have some symptoms that I can identify, that you also have?”And I just wish that… because I feel like probably if a group is open to a self-diagnosis, they would be open to also that other, more nebulous experience of identifying with having that illness. But, I just wish that that was something that was made explicit more often, or at all.Brianne: [Drew: [Brianne: [And I think at that time I was a lot less aware of self-diagnosis as a movement. But I also really relate to what you just said about Margo, which is I didn’t… even if I did 100% feel comfortable proclaiming it something, just nothing felt like it really fit. And now looking back, I’m like, “That’s because there was more than one thing going on, and your doctors weren’t looking for any of those things.” All that was overlapping, but… so I would say that this is… that’s important. The way that I have talked about everything about chronic illness on Twitter the entire time, so since I started talking about just my own experiences as a sick person in 2017, I have been really intentional to try not to use diagnostic language, because of that, because I was so hyper-aware of how that informed my relationships to other conversations in other communities. So I was like, “I don’t know. I don’t want to empathize with people when I see them talking about something because I don’t have a diagnosis because I don’t want them to be like, ‘well, who are you? Yours isn’t as…'” none of that kind of stuff, which some people do, it’s real that that happens. And it’s also true that… around the same time, maybe it was later, that I saw the illness fakers on Reddit for the first time, was also before I was diagnosed. I think I must’ve seen it by… I had seen it by 2018 because I had seen it by the time I started the podcast. Cause I felt hyper-aware of it when I started the podcast being like, “Okay, I’m going to ask people to talk to me about the inconsistencies in their own history, in an environment where having inconsistencies in your health history can open you up to online harassment.” So I think that also really informed it cause I was like, “I don’t really feel comfortable cause I don’t know what to call it, and I’m really aware that there aren’t places to talk about all of this stuff, if you’re not leading with your diagnosis. And so that’s pretty messed up. Plus there’s this other environment where… that’s actively trying to scare people from admitting to having symptoms before diagnosis or whatever.” And I think… because I read through it a couple times just to be like, “What is going on here?” And now, I haven’t looked at it a long time, but the people who were on it at the time that I looked at it and the things that they were calling out as consistencies about their stories. Now, I’m like, “Those are really consistent stories.” Those stories are consistent with every other story that I’ve ever heard. It is so normal to think that you have one thing and find out you have another thing. All of this is so normal, and the culture at large and a few really specific mean places on the internet lead us to believe that that’s not normal. Plus, a lot of chronic illness communities that rely on diagnosis…. basically you lose your entire network if you find out that you’ve been misdiagnosed, so that’s not helping us either. There’s all of this stuff. And, the hegemony of diagnosis let’s call it. So all of that was happening, and I don’t have… I mean, I don’t know. It depends. Via self-diagnosis, I am now starting to feel, and I have been for the last like six months, maybe… be like, “Okay. Even though I’ve known about hypermobility in EDS now for a couple of years, I’m actually starting to see the ways that my body might fit into those patterns that I know about, and that’s starting to make sense to me. And that gives me tools for making decisions about my future, which is what’s most important.” Like starting PT and trying to plan, “What can I reasonably anticipate that my body will need in the next year or the next five years?” Probably can’t plan longer than that, but I am starting to feel like I have the right information for that, which is incredible. And so internally, I’m now being like, “This feels pretty validated. I understand it. I feel comfortable talking about it and naming my symptoms in this way,” but medically, I’m not like… I wouldn’t walk into a doctor’s appointment and be like, “I have EDS. Don’t worry about it.” I still… and even to somebody who is outside of the chronic illness community, I’m like, “Oh God, I could not explain this to them.” Depending on context, I would say different things, but if I were dealing with someone who I knew understood this a little bit and was a pedant about it, I would just say, “I have hypermobility spectrum disorder.” If I was dealing with someone who I just want to understand, I would be like, “I have a genetic connective tissue disorder.” It’s messy, but it’s been really important to me this whole time to create conversation and resources that are diagnosis-agnostic because of that, because they don’t exist. It’s not a world that we live in, so I had a lot to say about that. Thanks for asking. Drew: [Brianne: [Drew: [so I just wanted to ask what that’s like for you, and if you have any theories, you know.Brianne: [But then I have also the twitching, which is different, possibly fasciculations. I haven’t looked up the pronunciation on that. It’s got a lot of consonants as a word. And those are also involuntary movement. They’re a little bit closer to what the alien hand syndrome was like, because I do have kind of involuntary arm movements or involuntary full body movements. Mostly those, mostly arm or body, depending. And they track more with fatigue for me. And so if I push too hard, that’ll start happening. And so I don’t… the other thing that I haven’t really talked about is I don’t know how to label my fatigue yet. I don’t know… because I’ve been focusing on one thing at a time, like, “What’s the biggest fire?” I don’t know if an ME diagnosis is also reasonable for me, because I know that that level of dyskinesia, of involuntary movement is a hallmark of an ME crash. But then I also know that the symptoms of ME can be caused by structural problems related to connective tissue disorder, and so it’s kind of like… there’s a little bit of diagnostic ambiguity about who fits into what… under what umbrella or whether these umbrellas are distinct at all, basically. So I’ve been looking at it in that direction. Sometimes magnesium helps. That’s the biggest thing that I hear from other people. I found that to be true too, but I have no idea… I mean, I mentioned it to my neurologist and he was like, “Oh yeah, that sounds inconvenient.” You know? Like, Cool! Sounds like you need to sleep more if sleep helps.” Drew: [I haven’t talked to any doctors about it because I’m scared that I will get that response, but also I do have anxiety, that is a thing that I experience, and I would never mention this to a doctor, but it does get worse when I’m anxious, but it is just also baseline there all the time.So I don’t know. It’s hard because also my pain gets worse when I am more depressed or when I’m having a borderline episode. So it’s… I dunno, it’s hard because I feel like I can’t talk about the relationship between my mental health and my physical health to a doctor, but also that is just such a huge part of my experience.Brianne: [And so that also means that if I get into conflict with somebody, I get really twitchy, which is incredibly derailing… to be like, “Just ignore the twitching. I want to continue the serious conversation that we’re having. Please don’t pay attention to the involuntary movement.” And then it also happens just from physical exertion,so if I either haven’t gotten enough sleep or I try to do something that my body isn’t ready to do, then I will also do it. So it’s hard cause I feel like… something that I will do as a slight of hand to avoid that problem… which also means, contributing to that problem in a way, but… is talk about the physical part without talking about the emotional part, and I have been able to do that. But it’s the same fatigue, and it’s the same nervous system, you know? It doesn’t… they’re not magically separable, and it’s so frustrating cause I agree with you, I wouldn’t go into a doctor and be like, “When I get into an a really emotional conversation, I get twitchy.What do you think that’s about?” I think they’d be like, “That sounds like textbook conversion disorder.” And I’d be like, “Let’s talk about that because trauma can convert into physical symptoms. However, it is not my only trigger, so that doesn’t make sense here.”Drew: [Brianne: [Drew: [I am doing both of those things, but I also get stabbing pains in my torso, when I’m tired or just sometimes for fun. Brianne: [Drew: [Brianne: [So every test that I ever had done when I was a kid and while I was growing up and I glossed over a lot of iron checks or whatever, for fatigue, but this is the reason that none of those came up with anything. But it’s also the reason that none of the interventions that I tried did anything. I’ve been put on so many diets and all of this other intervention stuff, and it didn’t do anything cause it wasn’t targeting the right thing.Like, ahhhh. So. Yeah, I have a lot of screams about that. So do you have any other questions at this point at this stage?Drew: [Brianne: [So I’ve been looking at that more directly, and that’s actually made it more obvious to me that I have different kinds of fatigue. I talked about like bee brain. That’s something that I did not identify until this year and in this crash cause most days I’m like,”Okay, I know what tired feels like, but for me in my body on a low energy day, I can still read a romance novel on my Kindle.” That’s my one freebie. And a couple of times I would have days where I couldn’t do that cause I couldn’t focus and I wanted to close my eyes and I was like, “This isn’t my normal fatigue. This is different.” And I took the Benadryl, and it went away and I was like, “This is how a histamine reaction feels in my brain.” So that was new, but that was how my brain felt the entire time I lived in the mold house, and I didn’t have the tools to differentiate. And so I’ve also been like, “Okay, this time I know about pacing.” And I had a Fitbit that I got a couple of years ago, for heart rate monitoring for POTS, and it died right around this time cause it was old. So I was like, “Okay, I’m gonna use my stimulus money on a couple of things to make my life work better.” I’ve been so averse… I am very averse to spending money on literally anything, that’s another one of my brain gremlins. It has a hard time justifying spending money on this kind of stuff. Like, “Wait till you’re better. Spend money on other things. Don’t assume you’re going to stay sick and spend money that I Drew: [Brianne: [Drew: [Brianne: [Drew: [Brianne: [Drew: [Brianne: [So the main problem with the spoon theory…. which I guess if anyone’s listening, who doesn’t know what that is, which is very possible, it’s a blog post that compares lupus specifically, but chronic illness in general and energy limitation to using spoons as an energy unit. So taking a shower is a spoon and yeah, getting on the bus is a spoon, and it kind of constructs energy limitation for healthy people as a blog post. And it has become a vernacular. A lot of people talk about spoons or identify as spoonies. And one of the criticisms of the spoon theory from a lot of people is they’re like, “Oh, but she talks about how she tries to save a spoon,” which is her kind of talking about pacing, I think. And they’re like, “I can’t predict my energy at all.” I didn’t relate to it because I wake up at any given place on it every day, and one of the things about the ring that has actually been helpful so far… so I’ve had it for about so two months, is that it turns out that, for me, that data, the sleep data has been very predictive of how my dysautonomia and orthostatic intolerance will be. So my relationship to my body is pretty busted for all the reasons that I’ve already described, so I’m very bad at assessing how much it is safe to push myself. If I sleep really poorly and I wake up with swollen lymph nodes, then I’m like, “Cool. Don’t do anything today.” But if I don’t wake up like that, I have no idea. And so there’ve been… before I bought the ring, one of the turning points was that I started making my own coffee again in the morning, a couple of months ago, after like four months in bed. And one morning that was a mistake. And it just ended with me twitching on the kitchen floor, and I think I almost smashed the carafe of coffee on my lap. And I yelped when that happened. I was like, “AHH!” and, Adam heard that, although he was asleep. He just heard a scream from the kitchen and came down… living with me is really fun. I just make a lot of terror noises on… not on purpose. So that woke him up, and he came down and I was lying on the kitchen floor. I think I was crying at that point. Cause it sucks. It sucks so much when you don’t estimate correctly. And so what the ring does is it basically can tell me, “Don’t make coffee today. You are not prepared for it.” And so it’s turned out to be a hugely valuable pacing tool. That, again, it’s more expensive than some of the other wearables, but at this point I’d recommend it to people who have the problem that I have, which is that you don’t know where your barriers… where your walls are at all. It has really helped me kind of stabilize my routine and my schedule and my output. So that’s been cool. And that, I think, is what’s creating the possibility to start doing a few things again. Drew: [And then maybe pressure myself into buying.Brianne: [And I wasn’t good at that before, which you think that one would be, but I guess if you grow up being told to ignore that input, then you will. And then the other thing… the other change is that I finally got a cane, so I had a cane when I was in the mold house and recovering from mold, but it literally happened that that whole instance was at the same time as my mother-in-law had knee surgery.And I just… or right after. So I just took her cane. I was like, “I need a cane. There’s a cane here.” And it was a collapsible HurryCane. It was great. It was too short for me, but I used it anyway. And then when I didn’t need it anymore on that cycle, I returned it, and then I didn’t need one for like a year and a half.And then I started to need one again. And I was like, “You know, I think evidence suggests that this is going to be a pattern perhaps forever, and that maybe I could just get a cane that I love instead of boring canes that I hate.” And I’m really tall, so I started looking for canes that I liked, and I didn’t really like any, or I found a couple that I kind of liked, but… I went to architecture school, as I said earlier, which means that I have just really specific and pretentious taste. It’s not avoidable. It’s just fact. So I couldn’t really find any that I liked, and the couple that I found that I liked didn’t come tall enough for me. So we made a cane. And so I sketched it out, and then Adam prototyped it for me. And so I made a cane for myself. So now I have a cane which I’m really excited about.Drew: [Brianne: [actually accommodate my body because I feel like I’m actually seeing it clearly, maybe for the first time, and that’s pretty wild. And the one other thing is something that I tweeted about yesterday or this week, which is that I just got a tablet and a gooseneck because my computer is also over five years old.And this is my power cord, it’s completely deteriorated to nothing. Drew: [Brianne: [And so I just did that. I also thought about that for like four months and I just did that like last week. So it’s already amazing. I’m very excited about it. Drew: [I saw your excited tweets about it.Brianne: [Is there anything that you think that I missed?Drew: [Brianne: [Drew: [Brianne: [There’s a hashtag now that a lot of people use, that is people’s entry point into the podcast actually, which is not on purpose, but has worked that way. So I also feel like things are just… the vibe is shifting. Do you know what I mean Drew: [but…Brianne: [Drew: [Brianne: [Drew: [Brianne: [And second of all, and more importantly, I don’t think that I could get somebody who is not chronically ill to edit this podcast, I just don’t. Like, I don’t trust anybody else’s judgment to interact with it at all. Or interpret it accurately or know where there… just literally everything about it. I was thinking about that for a couple of weeks, at least. I was like, “Okay, I accept that I need help. I am used to doing everything by myself because that’s just… I’m not… because collaborating is hard when your body isn’t good at deadlines. And what am I going to do about that?” And we still don’t totally know how it’s going to operate, I guess. But when I talked about it and you were like, “Can I help you?” And I was like, “Oh my God, I didn’t even have this question fully formed, but I think that you can!” Because the main problem that I have is that I can’t… I’m not going to be like, “Hey, person from Upwork who I’m hiring for $12 an hour, will you listen to 70 episodes of this podcast to get ready?” Not that anyone has to listen to all of them, but if you’re not chronically ill, you would, so like, “Listen to all of them and also my Ted talk and also some of my writing, just so that you get the vibe for the very occasional… it won’t matter most of the time, but it will matter.” So that’s where I’m at. And so now we’re going to try to figure out how to collaborate on… with two bodies that are on their own timelines, basically. Drew: [Brianne: [Cause I want to tell people what to expect, but we can’t, but expect more podcasts because I’ve done three more interviews already. So there’s at least three more coming after this, and probably more after that cause I have seven on my calendar, so… I don’t know. I actually… that was me talking. I don’t know… if you want to contribute to thatyou can, but possibly I just said everything that needed to happen.Drew: [Brianne: [Drew: [Brianne: [Drew: [Brianne: [And he was like, “There was a suction noise before that crack.” I was like, “Oh yeah, that’s not benign, is it? That’s really the joint moving around.”Drew: [Brianne: [Drew: [Brianne: [And so we’ve been using, a hashtag called NEISVoid, which is short for no end in sight. It’s alongside the podcast cause it was never… it’s not intended to be promotional. It was never intended to be promotional. Although it kind of works that way, weirdly. I was just like, “I don’t know what to call this and I don’t know how to make up a hashtag because every hashtag ever has been used.So if I just try to use an expression, it will be a mess. It needs to be distinct.” And this was in March, too, so it was in the middle of adrenaline time. And I was like, “Let’s just go with this. If nobody uses it, it’s not a big deal.” And then people are using it. So now that’s what it’s called forever.So if you’re not on Twitter or if you are on Twitter, but you don’t follow me and you haven’t seen this, and you’re looking for a lot of people talking about chronic illness stuff all the time. That’s what it is. And I think everybody in this first round of interviews are mostly people who have been active on Twitterso are kind of familiar with that. So that’s one way that I think… not that the tone will shift, but just that’s a kind of context for newer conversations. Drew: [Brianne: [but you figured it out. You’ve been cultivating this for 10 to 15 years now and it’s becoming more…” not, she wasn’t saying it in a mean way. She was saying it in a really nice way, and I’m just trying not to exaggerate it, but I was like, “What a time to have a vibe.” So… cause yeah, and in that way, I mean, Stories We Don’t Tell,and there’s a book for that. If anybody really wants to get into very traumatic individual stories that have been compiled together and I love it. It is very close to my heart. It’s also a lot, and I’m very grateful to have had that experience cause I feel like that meant that when I… not when I came to chronic illness, since I’ve been sick my whole life, but when I came to no longer being able to live in denial, I guess, after being invisibly accommodated for most of my life, it was like, “Okay, don’t worry.I am so ready to have a lot of conversations that would bum other people out because it does not bum me out.” And that’s what the void is like, for sure. Yeah. And then the other thing I think, because I’ve been tweeting about hypermobility so much is I think that a lot of the next few episodes are all hypermobility.Cause I’ve recorded three, like I said, and all three of them were hypermobile. One of them is you, so you know that. So you’re hypermobile, but also I interviewed two other hypermobile people. But I think there’s some other… there’s some other stories on my calendar, so they’ll get mixed up, but you know, people can just know that if the podcast seems like it ismore EDS focused or more Twitter focused. That’s not intentional. That’s a by-product of the year that I’ve had. Okay. I think that’s really it this time, after two false endings.Drew: [Brianne: [[guitar riff]Thank you for listening to episode 70 of No End In Sight.You can find me on Twitter and Instagram at @bennessb and you can find Drew on Twitter at @fibrofuckboy. And this a list, you can find a space to talk about your own experiences with chronic illness using #NEISVoid on Twitter and also a little bit on Instagram.And don’t forget that you can sign up to support the show financially over at patreon.com/noendinsight. Or if you wanna support the show but you don’t have a few bucks to spare I’d be just as grateful if you left a podcast review on apple podcasts or itunes.Thanks for listening.The post 70 – Brianne III appeared first on No End In Sight.