Being Asexual with Ehlers-Danlos Syndrome
May is EDS & HSD Awareness Month! We often speak about the intersection of asexuality and disability, but Ehlers-Danlos Syndrome happens to be one of Courtney's many maladies and her experience actually runs counter to the “disabled people are desexualized” narrative.
- Learn more about EDS
- Unearthly Pursuits: Inspired by her own chronic pain, Kansas City artist Courtney Lane takes the locks of fellow spoonies and uses it to make incredibly intricate works of Victorian hair art
Courtney: Hello, everyone and welcome back. My name is Courtney. I’m here with my spouse, Royce. And together, we are The Ace Couple. And I would be remiss if I did not call attention to the fact that May is Ehlers-Danlos Syndrome Awareness Month. You may see “EDS and HSD,” meaning Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders. And if you’ve been a long-term listener of this podcast, especially if you’ve listened to our episodes on ableism and disability, then perhaps you are well-aware of the fact that I, Courtney, am a woman of many maladies. I have multiple diagnoses and disabilities. Ehlers-Danlos syndrome, for me, happens to be number one. It’s the big one [laughs slightly], and everything else is kind of orbiting it. It’s obviously not going to be the case for everyone with EDS, because the symptoms of this syndrome is very much a spectrum. In fact, it’s more than just one spectrum. Back when I was diagnosed, they thought there were only three types of Ehlers-Danlos syndrome. There are now apparently 13 observable different Ehlers-Danlos syndromes. So, this is a very understudied, under-diagnosed, misunderstood set of disorders.
Courtney: And in my case, it has been quite debilitating in certain periods of my life, but the more and more that I learn about EDS, the more I realize exactly how many comorbidities are associated with it, how many other syndromes and symptoms arise in people who have EDS on a large scale. So, for basically my entire life, I have just kind of been the sick girl, the fragile girl, the one who always breaks – just lots and lots of things going on, and not always the same thing. It very much got to a point where even before I had a diagnosis, before I had a name for this or any of the other things I have, I would just explain my situation to people as being, “I just have faulty wiring. [laughing] There is just something in my wiring that is wrong, and it affects pretty much everything.”
Royce: That’s pretty astute, considering it’s your connective tissue.
Courtney: It actually is! Because yes, once I did grow up, once I started developing a real curiosity around, “What is this thing that is wrong with me? I want a name for it. I want a doctor to acknowledge it,” I did learn that Ehlers-Danlos syndrome is an inherited connective tissue disorder. So there is a defect in my connective tissues. But connective tissues are everywhere in your body. It’s the glue that holds you together.
Royce: They connect things. Everything.
Courtney: It’s the wiring. It’s everything. [laughs] So it really, really is fascinating. Because I was still a young child, I was probably around the age of 10… And I have that age in my head because we had a really bad family car at one point where – even though it was a relatively new car and it was so exciting, like, “Oh, we got this this really good car that’s nicer than the last car we’ve always driven” – things were just always going wrong with it: the engine, the electrical work, like, way more than any single car could have had wrong with it. And, you know, my mom would just be like, “There’s just something wrong in the wiring,” and I was like, “Just like me! [laughs] There’s something wrong in my wiring.”
Courtney: So it is fascinating to find out how incredibly true that ended up being. Because one of the most defining characteristics of Ehlers-Danlos syndrome is hyperflexibility. And to someone who hasn’t ever lived with that, you may not know all the implications, because it is so much more than just being really bendy. [laughs] Yes, I am very bendy, that is true. But with that bendiness comes tremendous pain, ample chance of injury, and there’s just a lot going on. Now, I will be very real and say that I have not brushed up on the latest EDS research so I couldn’t name all the 13 types for you. [laughs] I, for the purposes of this episode, would really just like to talk about my experience with it: my life, how it has affected [emphasizes] me, what it was like growing up not having a word for it, what it’s like now that I do have a word for it, and also how it ties in with my Asexual identity too. In fact, let’s start there first. When discussing the intersections of Asexuality and disability, this is no doubt an issue for some, but the widely-held narrative and the accepted conversational talking points are, “Disabled people are desexualized.” And in many, many cases, that is true, and we have talked about that before.
Royce: But there’s an exception to every rule.
Courtney: There is an exception to every rule.
Royce: And not all disabilities are immediately visually identifiable.
Courtney: Mhm. And so, although EDS, you know, can manifest in a variety of ways, physically, mentally, one of the most noticeable things – one of the most brandable, definable traits – is the fact that you have hyperflexibility. And in my experience, when I was a young lady, boy oh boy, did everyone sexualize the heck out of that. I honestly have no idea why [laughs] extreme flexibility is something inherently sexual to some people, why it is a desirable… sexual trait? [stammering] I, I don’t, I don’t know.
Royce: I don’t know exactly how it entered public discourse, but I definitely remember hearing comments here and there that match that, and it surrounds just being able to fit into certain positions that some people wouldn’t be able to.
Courtney: Oh, like sexual positions.
Courtney: Oh. Cool. So technically, in this instance, my disability would let me do all of those unusual sexual positions that some people fetishize, and that is going to be a fetishization of my disability, thank you very much. Could I do it? Yes. Do I have any interest in it? No, because I’m Asexual as hell. So that’s been a very, very weird, weird thing to try to navigate in the disability conversation. Because of course, there’s merit – and I want to give credit to those who do have disabilities and are desexualized; my disability is kind of hypersexualized. And as an Asexual woman, that sucks. A lot. There are also other just, like, weirder things that I’ve always known about myself, but only in recent years, even since we’ve been married, we have been learning new things, like, “Oh, turns out that’s an EDS thing. Huh, who knew?”
Royce: And you’re referring to little experiences or behavioral things that you’ve always done or have always experienced that you had assumed everyone else also experiences.
Courtney: That is part of it, yes, but also the fact that, like, my body proportions are abnormal.
Royce: Oh, right. We’ve had some situations where we’ve either measured for clothing or have looked up body ratio measurement statistics and found that, “Oh, it’s actually a little bit different than –”
Courtney: Yes. Because it has always been a struggle to clothe myself well, just because my proportions are so very, very odd. And that is… there are multiple layers to it. And a lot of those layers also get really sexualized. Like, I have extremely long legs, compared to the rest of my body. My torso: incredibly short. My legs: very, very long. And, like, having long, long fingers, and certain things just, like, proportionality. And doing this research, it’s like, yeah, even within normal human variation, it doesn’t vary that much. Most people for, like, leg to torso, height to arm span, things of that nature, there’s very little variation, and I fall outside of the normal range of that. And it turns out that’s an EDS thing. We just learned that within the last, I don’t know, year or two. But yeah, extremely long legs that are more flexible than they should be. Most allosexual people are going to read into that in a way that I don’t much care for.
Courtney: So I’m not going to get into all of my many maladies in this episode. We’re a weekly podcast, and most of our episodes average around an hour, so we have all the time in the world to talk about more of my maladies in the future, as it is pertinent, so I do want to keep the main focus on EDS. But as I go through sort of my life and my timeline of experiences, I might mention a couple other things here and there which are known comorbidities of EDS, to sort of give you a little bit of a picture of the different impacts that EDS can have.
Courtney: Here’s a fun fact about me: I knew how to pop my own dislocated elbows back into place before I could even fluently speak English. Because when I was a baby, when I was a toddler, my elbows would just pop out all of the time. And I had been to the doctor to relocate said elbows so often that I just figured out how to do it on my own. And then it didn’t become a big deal. I would just pop my elbows back into place. My mother was always told, “Oh, this is –” what did they call it? Like, “Nursemaid’s Elbow” or something, and they’re like, “Some babies have it and it’s just something that she’ll grow out of.” And then in some of my earlier years – like, basically as soon as I could talk – I would complain about how much pain I was in. And it wasn’t, like, whiny. I’ve actually been told that as a child, I was very quiet and mature and didn’t talk very often and wasn’t very loud, and that’s a whole other conversation. But I would mention the fact that I am in pain and the things that I would say would be like, “My back hurts.” And of course, like, rightly so, my mother and my grandmother would be like, “You’re four. Your back shouldn’t hurt.” [laughs] And yet I would mention it all the time. So I would occasionally go into doctors, this pain would be brought up, and it was always, “Oh, it’s growing pains. It’s growing pains. She’ll grow out of it.”
Courtney: And so, I dealt with those growing pains. And although my elbows were kind of my first big issue, my ankles became the next big issue. Because my ankles would just basically… It was like, they couldn’t hold up my own body. They would just, like, snap in half. And it would be happening almost randomly. I would just be walking slowly and leisurely and my ankle would just buckle and roll and snap, 90 degree angle, and then I would faceplant. But that would happen daily basis. Absolutely daily basis. And I’d have these horrible sprains, and when that got investigated by a doctor, it was, “Okay, wear ankle braces.” And I got some ankle braces. And, “It’s just because you’re growing. Once you grow into your joints, they won’t do this anymore.” But I didn’t grow out of those ankles rolling.
Courtney: And I kept having more and more pains which were unusual for a child. I was terrified of playing on the monkey bars, because I was not strong enough to get all the way across the bars, ever. I could not get all the way across. I knew I’d have to jump down at least halfway through. And a difficulty building strength in muscles is also potentially correlated to EDS. Because my arm strength is pitiful. So I knew I’d have to drop down. And the absolute searing, shooting, sharp pain that would go through my ankles and my knees and basically every, like, structural load-bearing joint on my body was just awful, to the point where it’s like, “No, I’m not going to play on the monkey bars. I’m not going to put myself in a position where I have to jump.” And that included running. Even running was too much impact. It was incredibly painful. Jumping rope was incredibly painful.
Courtney: And if that wasn’t enough, by this point, still in my elementary school years, I was starting to develop horrible, debilitating migraines, which would happen multiple times a week. I absolutely could not function. My migraine routine was like, get to the dark and pray you will throw up soon, because I could not sleep until I vomited. [laughs slightly] Once I vomited, I could sleep. And then I would sleep for, like, tremendous periods of time. But that was, like, the sweet release, because having the migraine before that happened was just agony. And of course, at that point, it’s like, [casual tone] “Oh, well, she just has migraines.” But it was like multiple a week, and to the point where I was on, like, basically a first-name basis with the school nurse in elementary school. Like, she knew me. She knew what my deal was. She knew if I came into the office, what I was coming for, and she’d turn off all the lights and put me in the back room.
Courtney: But after enough years of the ankle issues – and even though ankle braces wasn’t really cutting it, we saw more doctors, got more opinions. And I was in maybe fourth grade the first time a doctor said, “You have ligament laxity.” And that was the diagnosis that was on my paperwork: ligament laxity. And he was just like, “Yeah, your ligaments are just a little too loose.” And it was still kind of a “maybe you’ll grow out of it,” but it was still something I could say. Like, it was a way I could explain to people. But it was also at that time that, given the fact that I was so prone to pain and injury and I had braces on both my ankles, the doctor did, at one point, write me a note to get out of multiple gym class exercises. They wrote a note and they were like, “No running. No jumping rope.” And so I didn’t have to do those things anymore. And it was this very weird juxtaposition of the fact that there were basic exercises like running and jumping that I could not do, but I was also a dancer. And I continued dancing even well into my adulthood. I taught dance lessons until the pandemic started. So dance has sort of always been a part of my life in some aspect or another. And there were things about dancing that I could do. There were some things that I realized were harder for me than other dance students, but I loved dancing so much that I just pushed through and did what I could to try to always be better. And of course, the fact that I was naturally flexible helped in some aspects. But then here I was with a note being like, “She can’t participate in gym class.” So it was very weird.
Courtney: And never once throughout my entire childhood or teenage years did the word “disability” or “disabled” cross anybody’s lips. Which, in hindsight, almost seems a little weird, because for a while I was thinking, “Well, you know, they didn’t have a diagnosis. They didn’t have a word. The doctors I had didn’t know about EDS, so, how were they to know I was disabled?” But just based on clinical observations, they were writing me notes to get out of gym class and also prescribing me braces for my joints, which for some reason were not ever treated as a mobility aid, even though they kind of are. [laughs slightly] So it was a weird, weird world to kind of live in.
Courtney: But then I started fainting. The first time I fully just like lost consciousness, I think I must have been about 11 years old. And I was actually in the shower. And my mom was there, helping me wash my hair, which – as an eleven-year-old, I was getting old enough that I was very, very embarrassed by that at the time. But the reason why she was there helping me was because I was in a summer band program and it was crazy hair day, and I have always been exceedingly extra, even when I was a kid, so any dress-up day, any crazy hair day, anything like that, I am going all-in, 187%. I could not help myself. So the amount of hairspray, gel, glue, just nonsense that went into my hair that day…
Royce: Required assistance.
Courtney: Required assistance! [laughs] Yes. I mean, not to mention the fact that, like, certain tangles – like, even just brushing my hair has sometimes been an issue throughout my life, because I have very, very, very thick hair. It has often been very, very long; at this point in my life, it was also very long. And the instability of my elbows and my wrists and my fingers pulling on really knotted, really thick hair sometimes is an issue when I’m trying to brush my hair. And so, I had all of this nonsense in my hair from this crazy hair day, and I was just borderline mortified that my mother was needing to help me wash my hair at 11 – which, like, [laughs] it’s still a kid; I shouldn’t have felt embarrassment by that, but society told me that, like, [serious tone] by that point in your life, why, you’re practically a teenager, and if you’re practically a teenager, you’re practically an adult. And so, [laughs] my mother was washing my hair in the shower and I just fainted. I just lost consciousness. And thank goodness she was there, because she caught me and, like, dragged me out of the bathtub and got me back to consciousness and of course rushed me to the hospital.
Courtney: And so when we get into the ER and the doctor comes in and is like, “What happened?” I needed to start from the beginning, because I needed to justify to this man why my mother was washing my hair. So I start to explain that it was crazy hair day at band today. [laughs] And this guy was such a flippin jerk. Because as I was saying, “Well, it was crazy hair day during my band practice, so I used all of this… all of this nonsense stuff to get this crazy hair, so I was in the shower and my mom was helping me wash,” he just, like, cut me off and he was like, “Why are you telling me this? This doesn’t matter.” [laughs] And I was like, [put down and confused] “What?” And my mom got mad. Like, my mom’s always stood up for me in these situations. And of course, she was a frustrated parent, too, because she knew me and saw how I moved and what all my symptoms were, and she never totally bought the, like, [rote] “It’s growing pains; she’ll grow out of it,” because she saw the whole picture. So, she was also frustrated by this, and I’d never fainted before this point. So she was like, [angry] “She was telling you why I was washing her hair, and that’s when this happened!”
Courtney: And this guy was such a jerk. And I kid you not, he said, “The only reason why she fainted was because you were touching her hair, and it will probably never happen again.” And my mom was like, “Excuse me?” And he was like, “Yeah, it’s one of those weird things that they tell you in med school, there’s just, like, a one-day lecture where they mentioned that, you know, some kids faint when people touch their hair and they’ll grow out of it.” And that seems like what happened to me! And they ran, like, no tests. They did not even try to come up with any other explanation. So, like, my mom took me to the neighboring hospital and got another opinion, but even then they were nicer, but it was still like, “Oh, you know, sometimes kids do faint, and it might not ever happen again, and she seems fine now.” And they did take some tests. So I didn’t grow out of it. [laughs] In fact, there were certain periods, certain stretches of time, where I started fainting even more. And if I didn’t totally lose consciousness, I was at least really dizzy and lightheaded and all these other things happening. I now, many, many years after the fact, understand this to be POTS, postural orthostatic tachycardia syndrome, which is a very common comorbidity with EDS.
Courtney: And even at this stage, in my preteen years, when I’m starting to use the analogy of “Yeah, there’s just something wrong in my wiring,” I just couldn’t believe how many different things were wrong with me. There were so many different things wrong with me – like, some of them I’m just not even mentioning here and might not even be thinking of at the moment – where, like… I’ve seen hospital dramas. I watched ER. [laughs] I was just kind of waiting for the doctor who would actually look at absolutely every single thing wrong with me and be able to connect the dots. Because I got to thinking, like, “This is ridiculous, for one person to have all of these rare anomalies going on. It all has to be connected. There has to be an answer.” But I just – I didn’t really get that answer for a very, very long time.
Courtney: I got closer to clarity when I got referred to a rheumatologist at age 13. That was the very first time that I walked away from a doctor’s appointment thinking that I had the answer. It wasn’t the full picture. It wasn’t the answer, but it felt like something, where I had gone literally my entire life without anything. And at that point, he changed my diagnosis of ligament laxity to hypermobility syndrome, which is fascinating, because that very much seems like you’re saying EDS without saying “EDS.” [laughs] I mean, even when you look at the awareness month, EDS and HSD, hypermobility spectrum disorders – like, hypermobility syndrome was probably the best vocabulary that that doctor had at that time, but it didn’t tell everything. It didn’t tell the whole story. However, as a thirteen-year-old, mind you, during the same appointment, he also told me, “Yeah, you are gonna need to work three times harder than anyone else to get half as much muscle strength.” And I was like, “Well, that’s a shame.” He was like, “I suggest you hire a personal trainer and start serious bodybuilding if you want to not be in a wheelchair by the time you’re 30.” Which, it’s like, “[flat tone] Ha ha. Cool that you think my family can afford that.” [laughs] We can’t afford a personal trainer to start serious bodybuilding at age 13. And I mean, we were… we was po’. My mother also had her own whole set of medical issues. It was not a good time for anybody.
Courtney: But he also told me – in addition to, like, “Become a bodybuilder,” he also said that any pregnancies I had were going to be really complicated and potentially dangerous. Which, I don’t know if I want to say a 13-year-old is getting old enough to be able to accept that information? But there is just something very weird about the default of assuming that I want to or will get pregnant, at that age; it seemed a bit young. But this is also at the time where I thought I did want a kid and I did think “I want to be pregnant at some point in my life.” I now definitively can say I do not ever want to be pregnant for a variety of reasons, but when I was 13, I did. I loved children, so I thought that having my own, biologically, was going to be an inevitable step in my life. But my pain just kept getting worse. And although I could not hire a bodybuilder, I definitely got increasingly more intense in my dance training. So I did actually develop, like, ridiculously strong legs. [laughs slightly] My legs and, for a certain period of time, my back got very strong and very muscular. My arms never did, never once. But the pain I was dealing with was debilitating. Some days, I couldn’t even get out of bed. Some days, I’d come home from school or from dance class and I would just lay flat on the back on the floor with my feet up in the air, straight against the wall, because that was as straight as I could possibly get my back, and I would just start sobbing. And I just – there wasn’t anything I could do. I was just in so much pain.
Courtney: I was also in middle school the first time a doctor prescribed me a back brace, which again, in hindsight, you’re prescribing a preteen a back brace and no one once thought to name this disability. I also had some really creepy and inappropriate comments from the school janitor, because he was trying to bond with me over the fact that we both wore back braces, but he was also using that as an excuse to try to grab me around my waist and touch the small of my back. And it was horrifying. Creepy, creepy dude. Complained about him. Nothing happened. Even my back brace was fetishized! Gosh, an Asexual gal with EDS can’t catch a break! [laughing slightly]
Courtney: So, I mean, at this point in my life, I’ve cycled through different words for what I had. They had evolved and changed, and most of them I was told “you’ll grow out of.” It was Nursemaid’s Elbow. Then it was growing pains. Then it was ligament laxity. And now it’s hypermobility syndrome. POTS was never mentioned through any of this, even though I was regularly fainting and having dizzy spells. That was just like, “Yeah, guess that happens to you, huh?”
Royce: As you were talking, I looked up a couple of those early diagnoses. And ligament laxity, the current Wikipedia page at least mentions EDS and Marfan syndrome.
Courtney: Ah, yes, Marfan syndrome and Ehlers-Danlos syndrome are kind of like sister things. But they are distinctly different. But they have some overlaps in some cases.
Royce: There appears to be some overlap, at least, with ligament laxity and other diagnosable joint hypermobility things. With ligament laxity sometimes only affecting specific parts of the body, like –
Royce: – just the hands or just the feet.
Courtney: Oh, sure. Because some people can do the little finger tricks that I always used to do, but they don’t have the flexibility in the rest of their body.
Royce: Yeah, I can do some of those. I used to be able to touch my middle finger to the back of my hand. I can’t do it now specifically because the skin on my hands doesn’t stretch like it used to.
Royce: But my joints are still flexible.
Courtney: Yeah, most adults get naturally less flexible with age, just as a general base rule. But I mean, when I was a kid, I had so many different party tricks. Like, when people would be like, “Oh, can you touch your thumb to your wrist?” I was like, “I’ll do you one better. I will lay my thumb flat on my wrist,” and –
Royce: That’s something I’ve always been able to do. The bending my fingers backwards, I had to stretch as a kid.
Royce: And when I just stopped doing that regularly, because I was around other elementary school students that thought it was interesting, then I lost the flexibility. I also saw that having the appearance of flat feet was mentioned here.
Courtney: Oh, I did have flat feet.
Royce: Well, this made me curious. Did you actually have flat feet or did your feet just appear to be flat due to something with the ligaments?
Courtney: I don’t know, because my feet aren’t flat anymore, and that was always explained to me as happening after I started doing en pointe ballet work. Which is, yeah, very, very fascinating. Because I did have flat feet, and at one point that got put in my charts, when I was in elementary school. And that became like an insurance issue, because then insurance didn’t want to pay for certain things because they didn’t want to pay for things associated with flat feet. It was really weird and arbitrary, [laughs slightly] but it was like, “Curses. Why did that doctor say I had flat feet?” So that’s interesting.
Royce: The other one, hypermobility syndrome – when I search for that now, it directs to hypermobility spectrum disorder. It appears that maybe hypermobility syndrome was just an earlier diagnosis of it.
Courtney: That’s the impression I’ve always gotten. I haven’t done modern research to see where the trail leads, but that very much does seem like a placeholder diagnosis before the real thing got better understood. But yeah, all those party tricks. I could also, like, turn my feet backwards. Like, standing straight up, I could twist my feet around so that they were facing backwards. And I could lay on my stomach like a seal but arch my back and bend my feet so that my feet would cover my eyes over top. And I just, like, turned myself into a donut. [laughs slightly] Like, I’d do all those little party tricks because people would be like, “Oh wow!” But I was in and out of physical therapy for a whole bunch of things, because there was a certain period of time where they were like, “Oh, you just need to develop more strength, because your joints are just weak.” [laughs slightly] Not necessarily the case, and it didn’t ever help. But I had physical therapists that – they’d be like, “Oh, so you have ligament laxity? What does that mean?” And I’d, like, do my tricks for them and, being physical therapists, knowing how bad that is for your joints to do some of those things, like, I made some of them nauseous with how [laughs] ridiculously over-flexible I was in some of those things. And they’d always be like, “Never do that again.” And of course sometimes I still would anyway. It made me interesting at birthday parties. [laughs slightly]
Courtney: So now that you pulled up the Wikipedia on ligament laxity, I’m so fascinated by this. Lived with this my whole life, and I’ve had vocabulary for it for many years now, and I’m still always learning new things and connecting new threads, because there are just so many layers. But this flat feet thing is fascinating! And I think this might absolutely be me, because it’s saying that “they appear to have flat feet because there is actually an arch when not supporting weight, but when stood up, the arch will physically flatten, because ligaments within the foot cannot support the arch.” And that is so fascinating, because I 100% believe that that is exactly what happens to me. And it also says, “The underlying problem, however, is not solved by wearing shoes with arch supports.” Which I find very fascinating, because I absolutely had arch supports when I was a kid, and I hated them. They were in my tennis shoes and tennis shoes were, like, my least favorite thing to wear. I did not think they were comfortable. I thought they hurt my feet. And everyone was like, “You have to wear them. It’s the best thing for support for your ankles, and it has your arches to… un-flatten your feet, I suppose.” But it says that the problem is not solved by wearing arch supports. So, in your face, doctors! I was right the whole time, but I was a young girl and you wouldn’t listen to me [laughs], nor my mother.
Courtney: But yeah, it also mentions people who have this having “extreme pain in the feet and lower legs, abnormal standing and walking habits,” and that “the knees may flex backwards with each stride,” which, like, that’s also just like hyperflexible knees – like, those joints do hyperextend. So that’s fascinating! Yeah, the whole feet thing is really interesting, because I don’t know if this has anything to do with anything, but on one of my feet, I can control each toe individually. That’s another neat party trick that I used to do. [laughs] But when I finally did get my diagnosis of Ehlers-Danlos syndrome, the doctor did actually look at my feet. And the interesting thing is, because as a teenager, as my symptoms worsened, as it got to a point where I was fearful and questioning for my ability to continue dancing, unsure of my career path, not knowing what I would or would not actually be physically able to do – there were, of course, all these thoughts buzzing around, but I just didn’t have the answer.
Courtney: And, I mean, I mentioned medical drama shows, and we talked about that dreaded House episode at one point. Like, when I entered adulthood and when I was watching House, it was kind of cathartic for me, because even though he is such a monumental asshole, he was finding the things that other people couldn’t find and connecting the threads that other people couldn’t connect. So in my mind, I was like, “This man is a hero and I need someone just like him in my life. He needs – I don’t even care if he disrespects me. I don’t care if he’s a jerk. Like, I just need answers.” I was so, so desperate for it. And by this point, I already knew I was Asexual, too. [laughs] So when that actual episode debunking Asexuality came out, that was just tremendously uncalled for, absolutely upsetting.
Courtney: But it was around this period of time that I started to dip my toe into doing my own sleuthing, my own internet searches. And for as much as doctors tell you not to do that… wow, sometimes you just don’t have a choice. [laughs slightly] I basically diagnosed myself with Ehlers-Danlos syndrome long before it got put on paper in my charts. And that is why there are many cases where I do think self-diagnosis is valid. And sometimes it’s the only real pathway to getting a formal diagnosis as well. Because I would go online and I would search all of the symptoms I had – ones that did have a diagnosis, ones that did not, ones that still seemed like an anomaly – and I would read as much as I could about each individual thing, and then I would try to find communities and forums of people talking about living with these symptoms. And some way along the line, I learned about Ehlers-Danlos syndrome. And as I mentioned earlier, at the time, it was like, there are three types of Ehlers-Danlos syndrome. It was like, classical, vascular, and hypermobile type. And all of the most common symptoms that I was reading about – like, I was learning about symptoms I didn’t even know I had [laughs], because I just thought that was how bodies worked. And so it just fit like a puzzle piece. And so I started specifically learning about Ehlers-Danlos syndrome.
Courtney: And after I was utterly convinced that this is exactly what I had, then the issue became finding a doctor who could actually diagnose me. And EDS is a weird one, sometimes, for diagnostics. We famously use the zebra as our mascot. We are the EDS zebras. And that is because of this old saying in diagnostics that is basically just trying to say, “Go with the simplest possible diagnosis, because that’s usually going to be correct.” But the saying was something along the lines of, “If you hear hoofbeats, think horses, not zebras.” So in these early EDS communities, it’s like, “Well, we are the zebras [laughs slightly], and you are not diagnosing us properly, and you’re not listening to us, and we’re not getting proper medical care.” And that very much seemed like everything that was happening throughout my entire medical history. It was disregarding certain concerns for the sake of saying, like, “Oh, it’s this really simple thing, and it’s fine.” And that wasn’t ever the case. So that just solidified it even more for me.
Courtney: It is a genetic disorder, but some of the types of EDS can be picked up on genetic testing, but not quite all of them – at least, not yet. And genetic testing is extraordinarily expensive. A lot of insurance doesn’t cover it, and a lot of hospitals and clinics don’t even do it. So, there are many people in the US who, if they want to get genetic testing for this, have to travel multiple states where they’re going to be out-of-network for insurance, so insurance isn’t going to – insurance will cover none of it, but you have no local choices. And even then, if you have the type that can’t even be seen on a genetic test, then you just paid for extremely expensive genetic testing and traveled and took time off of work to do all of these things to still not really have an answer. So it wasn’t always a convenient or proper thing to do for everybody.
Courtney: And so the way I actually got my diagnosis was after moving to Kansas City, I found a Kansas City Ehlers-Danlos support group and I started asking them. I was like, “What doctor knows something about this?” Because so many doctors just don’t even know about EDS, or they might know vaguely about it, but not confident enough to diagnose it. So, pretty much all of the signs pointed to a cardiologist, which – there is a vascular type of EDS, which I do not have. They did test me for that one because it is the most dangerous one, like potentially lethal one. Like, you can have major heart malfunctions, blood vessels rupturing, lots of different issues if you have the vascular type. But it was a cardiologist who knew about Ehlers-Danlos syndrome because of that cardiovascular type, so he was more than willing to see me. I managed to find a doctor who could refer me to him, because you need referrals to see all specialists.
Courtney: And he basically had me do what I suspected he would, which was just had me do a bunch of contortions. The observational method of diagnosis is, like, “How many joints are hyperflexible?” If it’s mostly all of them, then yeah, might be EDS. And so, he had me do all of this bending, all of this contorting, and while he was like, “Oh, can you easily touch the floor without bending your knees?” And I was like, “Easily, I can put my palms flat and bend my elbows. Like, I can super do that. Absolutely.” He looked down – and he had me do this barefoot. He looked down at my feet. And my heels have always had these little bumps in them when I put weight on them, and they just sort of look like little beads that just sort of protrude around the side of my heels. And when I stood up, he looked down at my feet, and he was like, “That is textbook EDS.” And I was like, “Huh. Fascinating.” And he kept saying that. He was like, “Textbook EDS,” as he’s going down his chart. And he noticed the fact that I had a lot of stretch marks in certain places which were not likely based on my current weight and size at the time. And he asked me, he was like, “How long have you had those?” And I was like, “I don’t know, since I was, like, 12?” And he was like, “Textbook EDS.” [laughs] So he was so overwhelmingly confident. And he was like, “You absolutely have EDS. There’s no question about it. It’s probably the hypermobility type.”
Courtney: So he said, “I am not at this point in time going to recommend that you go –” I think they were trying to send me to… Omaha, Nebraska, I think was the closest place to us that did this specific genetic testing. And he was like, “That’s going to take a lot of time. It’s going to cost you a lot of money. And it still won’t give you the answer if it’s this hypermobility type.” But he said, “But just to be absolutely sure you don’t have this more, like, life-threatening type, I do want to test you for it.” So he did test me for that to confirm. And then I had it. I had my diagnosis. It was a trek, and it was a journey.
Courtney: And it was very, very weird to start talking about my disability alongside my Asexuality. And also with this sort of vastly different experience than the most common narrative is, in the fact that actually, my disability has been exceptionally fetishized since I was very young. And like, now, I know more words for what I have. I know more words for my own – my smattering of comorbidities that all kind of come along with EDS, which makes all the sense in the world. Because even when I was a teenager and I was like, “No one person should have all of these things. Like, what are the chances? I’m clearly just a mutant,” – it makes sense when this is affecting all of your connective tissues, because there are connective tissues in the brain, there are connective tissues in the skin, in your joints. It’s just all over the place. So of course, that can cause additional issues.
Courtney: And like, some anomalies from my past are starting to get answered in understanding these comorbidities. Because I had a severe allergic reaction when I was probably about 14 or 15 years old to over-the-counter melatonin. [laughs slightly] And – well, I think it was technically a prescription, but it was a very low dose; it was still probably within over-the-counter amounts. But I had, like, five different sleeping disorders at the time [laughs], and the amount of pain that I was in, I couldn’t sleep, and I really needed my body to be able to heal. So I had a doctor who was like, “Here’s a prescription. Take melatonin.” And he was even like, “Melatonin is like the safest sleeping aid. It’s the only thing I feel comfortable giving someone your age. You can get this over the counter, so it shouldn’t be a concern.” And I had such a violent allergic reaction to it that my face swelled up so much that I couldn’t open my eyes and I couldn’t speak. And of course I got rushed to the hospital, and the hospital is just like, “You had an allergic reaction to melatonin?” [laughs] They were like, “I’ve never heard of such a thing.” And I never know what’s relevant to fill out in all those doctors charts they make you fill out, but they always ask for allergies and, like, known allergies to medication. And so, ever since that point, I’ve started saying “melatonin,” and every now and then, I’ll have a doctor just squint at me and be like, “You’re allergic to melatonin?” I’ll be like, “Yeah. Like, melatonin put me in the hospital when I was a teenager.” [laughs] And one doctor was like, “Your body produces melatonin naturally.” And I was like, “I know, I guess that’s why I can’t sleep!” [laughs]
Courtney: So now with the gift of hindsight and the knowledge of comorbidities, I can say that that’s very likely a case of Mast Cell Activation Syndrome, MCAS, which is a malfunction of the mast cells, which cause allergic reactions. So, although I don’t necessarily have something as clear cut as, like, “I am allergic to bananas,” I can just, like, seemingly develop allergies to things out of the blue. And sometimes there are things that I have no business being allergic to. Right before the pandemic struck, I actually developed a severe allergic reaction to liquid hand soap. And I don’t know what the actual ingredient was, but I found bars of soap that I could use safely, and almost every liquid hand soap I used would have me just, like, beet red, swollen, enflamed, pained hands. So I stuck to bar soap. And sometimes I can just be allergic to, like, I don’t know, the heat. I went outside one time and it was hot and I just got hives all over my body – and I’d never had hives before! And looking up Mast Cell Activation Syndrome, it’s like, yes, some temperature differences can actually cause a flare-up in your mast cells. So, literally allergic to heat, literally allergic to chemicals my own brain produces, literally allergic to soap. Tremendous allergy to dust. That’s probably the most constant one. And yeah, I don’t know, stress. Why not just be allergic to stress. Everything seems to be worse when I am stressed. [laughs]
Courtney: So it’s weird, and it’s complicated, and it is not an easy life. I do what I can through the fatigue and the pain. I advocate how I can for the disabled and Asexual communities. And I play with mobility aids and see what works best for me. The fun thing about EDS is that you can’t always predict how you’re going to be. There are some days where it’s like, “This is actually a pretty good day! I can go for a walk without a mobility aid and I won’t just fall over and die.” And that’s nice when that happens, but then there are some days where, can’t get out of bed because I’m in so much pain. I dislocated a certain joint that is vital to my body working. Uh, don’t love dislocating or subluxing. Subluxing is kind of like a partial dislocation. So, it could be a dislocation or a subluxation. Don’t love when that happens in my cervical vertebrae in my neck. That’s debilitating. Don’t love when it happens to my sacroiliac, which is like – I learned so many new joints. I didn’t know what a sacroiliac joint was until I dislocated it. And then you know exactly what it is, because it’s going to make it everybody’s problem. That’s like the joint of your hip on your back. Like, right above your butt where some people have, like, little dimples on their lower back, I guess. Kind of that area. Like, did you know that that’s a joint? Did you know that it’s the worst thing in the entire world to dislocate? Because it is. Trust me.
Courtney: So, I have a drawer of braces at this point. I have neck braces, I have ankle, knee, elbow, sacroiliac, [laughs] wrist braces, hand compression gloves, the entire gambit. And a variety of mobility aids. My first one was a cane. That was prescribed by a doctor. Actually, the reason why a doctor first prescribed me a cane was because of the very first trip we ever went on that wasn’t work-related. Do you remember that, Royce? We went to Chicago to see BABYMETAL.
Royce: I didn’t remember you getting a cane prescription specifically for that trip.
Courtney: It was after the trip.
Royce: Oh, okay.
Courtney: Yes. So we went to Chicago Open Air for the metal concert. There were lots of metal bands there that we were interested in, but we probably wouldn’t have traveled if it wasn’t for BABYMETAL, just because of the fact that they were only doing, like, two concerts in the entire country in the span of like two years, and it’s like. “They’re going to be in Chicago. That’s so close! That’s only an hour plane ride! And look at all these other bands that we’re interested in that’ll be there.” So we went to that. But the last day of that concert, even though they let us sit in, like, the accessible section that actually had chairs – because it was kind of a standing, outdoor, kind of a stadium situation with multiple stages, and we were able to sit, in the accessibility section, but they did not let us park close enough to the venue. We had to park, like, so far away. We rented a car, and I wish we hadn’t for a lot of reasons [laughs] in hindsight. It wasn’t fun to rent a car and try to drive in Chicago [laughs], but we thought it would be more economical for the amount of time we were going to be there. But we parked so far away that, by the time I got to the venue, I was already wiped. I wouldn’t have been able to stand if they wouldn’t have let me into the accessible section. But I just straight-up could not walk back to the car by the end of the concert. And I almost fainted at one point. I remember sitting in the med tent and basically trying to beg them to, like – because they had some golf carts for people who were driving around who were, like, staff. And I was begging one of them to golf-cart us to the car. And they wouldn’t quite do that, but I think what ended up happening – Royce, didn’t you just have to walk and go get the car, and then they let you drive it up to come meet me?
Royce: I can’t remember. I remember there being way too many hoops.
Royce: I wouldn’t have been able to bring the car all the way into where the med tents were ’cause that was too far into the festival grounds, but there may have been some “meet you halfway” sort of thing.
Courtney: I think they were willing to golf-cart me to the edge of the parking lot for the arena, and then – because they blocked off the entire parking lot and didn’t actually let anyone use it for parking, but they golf-carted me to the edge of that. And then you had to walk and go get the car and come get me. And when I was explaining that to my doctor, at one point, she was like, “You need to get a cane.” [laughs] And so she wrote me a prescription for a cane, after I had gotten back into Kansas City. And any new mobility aid is kind of a weird sort of learning curve – learning how to make it work for you, learning if it’s right for you – but I frequently use canes. I have a variety of them because of the fact that my disability changes different days. My joints might function differently on different days, and also my dizziness and fainting spells might be acting up on one day but not another. So my needs are constantly fluctuating. So – and since my fingers and wrists are also sometimes the issue, I have canes with a variety of different handles. I have a rounded kind of knob cane handle. I have straight cane handles. I have ones that have little curves in them. So that’s nice, because now I can just pick out what I need for that day.
Courtney: And more recently, I got some interesting forearm crutches that aren’t like the typical forearm crutches. Because I specifically got these because of how highly recommended they were for people with EDS, because sometimes the angle of traditional forearm crutches puts way too much strain on wrists and elbows for people who have EDS. So for those people it is actually recommended to have, like, a 90-degree angle. So the crutches I got, my arm sits at a 90-degree angle, and my forearm is parallel to the ground, and I can crutch along that way. And that’s helpful for some of the extremely bad days. It doesn’t help on the days when I just like straight up can’t get out of bed. [laughs] But yeah, I don’t know. I haven’t gotten a wheelchair yet. I’m not opposed to it. I think there may be a situation where it might be helpful. But, I mean, it’s pandemic time now, and we’re just never ever leaving the house again, so if I need to literally crawl on the floor to get from one room to the next, I can do it. I also have a lovely spouse [laughs] who will grab me tight around the back and hobble with me if I just need support to get from one place to the other. [laughs] So it’s all very, very nice. But, I mean, pre-pandemic, when I would travel, I would, at nearly every airport, need to get wheelchair assistance, because I could not walk the distances needed at some airports. I even got abandoned at an airport one time because they never came to pick me up. They, like, dropped me off in a corner and they were like, “I’ll be right back,” and then they never came back. And I missed my plane because they never came back!
Courtney: So this is definitely one reason why accessibility can be really complicated and nuanced. Because with some disabilities, they may not even need exactly the same accommodations for every single situation, and it might not be exactly the same every single day. And sometimes that can be hard for abled people to wrap their heads around, because the sort of reductive popular view of what disability is is “Either you can do this thing or you can’t.” And that’s just not the case for everybody, and, dare I say, most people. Just like all things, just like sexual orientation, just like gender, disability is, too, a spectrum.
Courtney: And I hope that you found some of this interesting. I hope that perhaps it has given you a little glimpse into what Ehlers-Danlos syndrome is, what it can look like for someone who lives with it. It is still rare. It is still under-diagnosed. It’s gotten to a point where some people even reject calling it rare because a lot of people will say, “Well, it’s not necessarily rare. It just isn’t properly diagnosed.” So whatever numbers right now that are out there about the percentage of population with EDS, it’s very probable that it is low. But we can say the same thing about Asexuality too. Most people throw around 1% of the population. The more recent study I saw was 1.7% of the population. And it’s still such an under-known orientation that, as more people learn about it, then it’s very probable that that percentage is going to go up a little bit.
Courtney: I suppose one quick note just because – I mean, it is May, it’s EDS Awareness Month – but, I mean, right now in the U.S. – I probably don’t have to go into too much detail. I think this is big enough that those of you listening are aware of the fact that it is looking like Roe v. Wade is going to be overturned in the Supreme Court, and people are very much concerned about reproductive rights. And I do want to draw attention to the fact that this is an incredibly intersectional issue. Yes, it is women, it is non-binary people, it is trans men who can or will or want to get pregnant. But it is also very much a racial issue. Because in this country, the mortality rate for Black pregnancies is something like three times higher than white pregnancies. But it is also very much a disability issue. There are some disabilities where pregnancy can be complicated, painful, potentially fatal. In the case of Ehlers-Danlos syndrome, I was told even before they knew it was Ehlers-Danlos syndrome that I would have complicated and difficult and potentially dangerous pregnancies.
Courtney: And I’ve actually met someone whose EDS symptoms were so mild, so low, that they did not deal with everything I dealt with growing up. They did not know that they had any issues at all – until they got pregnant. And it was during their pregnancy, when they’re, you know, all the natural changes that happen to your body when you get pregnant happened. They started getting all of these new negative symptoms that were only exacerbated after giving birth. And it did end up being a very complicated and dangerous pregnancy. Thankfully, the parent and the child survived, but now, they are a full-time mobility aid user. They use a cane to walk 100% of the time. They use ankle braces and stiff lace-up boots to further support their ankles, and deal with a lot of pain all over their entire body, and also deal with chronic fatigue and many of these other things that are associated with EDS. And that is not an uncommon story. This is a disability that can be further exacerbated by pregnancy.
Courtney: So knowing this person, knowing what I know, doing the research I’ve done, having that first little heads-up from a doctor at age 13, I know I personally would never choose to be pregnant with this disorder. Other people have different comorbid syndromes. It’s obviously each individual person’s decision to make. But it is a factor that doesn’t seem to be getting as much attention in the broader conversation of abortion access right now. But I do think that abortion should be safe and legal for anybody who has any reason that they want one. And the physical health of a disabled person and their ability to carry a safe pregnancy is something that also very much needs to be discussed. Because, my goodness, for as bad as it was with my friend who had not even had symptoms prior to pregnancy, oh, I can’t imagine how much worse it could make someone with my side of the spectrum where things are a little bit more severe. I already have debilitating days where I can’t quite function. So, let’s not risk making that any worse on purpose, shall we? [laughs] And there would need to be a series of catastrophes for me in my personal situation to actually get pregnant. When I’ve had enough catastrophes in my life that [laughs] I’m not ever going to rule out anything. But I do, for the most part, speak for people who are not me – other people who have this or other disabilities that deserve to have their own nuances added into this conversation.
Courtney: And another weird thing, which is actually kind of relevant to the Covid-19 situation, is Long Covid. So there’s all this buzz about “What is Long Covid.” And there is a certain percentage of people who are developing symptoms that are maintaining for a prolonged period of time, and a lot of them are respiratory. And there is a lot of speculation that this is actually going to be disabling – that this is a mass disabling event – because there are a certain percentage of people who have contracted Covid at one point or another who are going to have lasting symptoms, potentially for the rest of their life – we don’t know yet. And the interesting way that this intersects with EDS is that the Ehlers-Danlos society actually joined an international council for researching Long Covid, and that is because it was acknowledged that a lot of people who have Ehlers-Danlos syndrome have, in very similar ways, had Long Covid from other viruses in the past. I think I may just be one of them. [laughs slightly] The first really serious respiratory illness I had, I believe I was 18 years old. And I’ve always been – like, I get a lot of colds. They last a lot longer than anyone else I know. So, I’ve always been, like, a little extra sick. And like, Royce, when you and I would get sick at the same time, like, I’d be laid up much longer than you, on average.
Royce: You would usually get sick first. I would usually catch it from you, and then also be better before you were.
Courtney: Yes, exactly. And so, that’s just kind of my baseline. But when I was 18, I got, what, I don’t know – maybe it was the flu, maybe it was a more common virus. We don’t really know. It didn’t seem relevant at the time. But I just got tremendous difficulty breathing. One of my lungs actually collapsed. I went to the doctor and they were like, “Oh, your lung collapsed.” And I was like, [sarcastic] “Oh good. [laughs] Joyous occasion.” I mean, they prescribed me several medications, an inhaler – I had never had an inhaler in my life until that point – and got my lung better, but I had this cough that persisted for months. And basically ever since then, nearly every year, I will get a cold or a flu, something that is mundane in other people, but in my body it will turn into either bronchitis or pneumonia. Like, every year, pretty much. And then I know that I need multiple medications. I need multiple inhalers – like, standard albuterol inhaler, but also steroid inhalers – and it’s a whole thing. And the fatigue, the difficulty breathing – it persists for a very long time. And this is why the EDS Society contributed information and research toward this kind of dissection of “What is Long Covid” and “What can we expect”.
Courtney: So that’s why I’m not fucking around with Covid. That’s why we have been exceptionally quarantined. There were a couple of glimmers of hope where we thought, “Maybe, maybe now’s the time we can start very cautiously venturing out,” but then a new variant or a spike, something else happens, everyone else stops masking, something will happen. And we’ll just… we go right back in, just retreat back into the house. This is just where we are. Because I just do not know what Covid would do in my body. Even if it’s Long Covid, and even if that’s exactly the kind of thing I’ve dealt with before, I want no part of it. All this talk of, like, “Oh, it’s only people with pre-existing conditions who get hospitalized, and it’s only people who are already sick and already disabled who die,” and it’s like, okay, but that’s me, though. You get how that’s me, though, right? [laughs slightly] So even though I’m in an age demographic that should be perfectly healthy by all accounts, I never really have been. So we’re not messing around with it.
Courtney: And on that note, I think we will say goodbye to you for today. I would encourage you to spend the last few days of May learning a little bit about Ehlers-Danlos syndrome and hypermobility spectrum disorders. And we will see you next month, for Pride month. Goodbye!