Kayle Hill talks arthritis, medical trauma, and hypermobility.
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Transcript
Brianne: I’m Brianne Benness, and this is No End In Sight, a podcast about life with chronic illness.
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Drew: Hey, this is associate producer Drew Maar. Before we get started, here’s a quick reminder that you can find No End In Sight on patreon, which is a really simple way for listeners to subscribe to support the show financially on a monthly basis. So if you’ve been enjoying the podcast and you also have a couple bucks to spare, We’d be so so grateful if you’d sign up as a patron at patreon.com/noendinsight. Today we’ll be talking to Kayle Hill about rheumatoid arthritis, medical trauma, and hypermobility. A couple of content notes for this episode: medical trauma and PTSD are major themes and a lawsuit is discussed starting around 55 minutes in. Before we start, here’s our disclaimer: This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
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Brianne: Okay. Well, I like to start just by asking people, how has your health as a kid?
Kayle: Not good. It was never good. As early as I can remember, I’ve always had a chronic illness. My relationship to it has definitely changed over time because I’ve acquired more and more and more chronic illnesses, but yeah. It was never really that great, especially because my major disease back then was rheumatoid arthritis, and I was on methotrexate, which is a chemotherapy drug, and I was just so sick all the time.
Brianne: How was that diagnosed? Like, how did you end up getting diagnosed with juvenile RA basically, right?
Kayle: Yeah. So, I know this only from the stories that my mom has told me, but basically, it was my left ankle to begin with. And it was just red and swollen. And she’s a nurse, so even as I was growing up, she was always like, “Okay, let’s just wait. Let’s not freak out and go to the doctor.” She thought maybe I sprained it. I don’t know how. I was a baby. I was delayed in walking, and eventually it got to the point where even when she would try to put my socks on, I would just scream.
Brianne: Presumably from pain, I get that it’s anecdotal. Yeah.
Kayle: And so she took me to the pediatrician. And he took some images, and he was like, “This is not good.”
Brianne: “There is damage.”
Kayle: Yeah. “There’s damage, and it’s not the kind of damage that can heal.” So I was brought over to Boston children’s hospital, and there’s a whole side story about the first rheumatologist we saw who was apparently absolutely terrible. But then the head of the rheumatology department… my case kind of got pushed up to him, and I was with him until I was 18.
Brianne: Yeah.
Kayle: From like, one year old to 18 years old.
Brianne: So like, as long as you can remember, basically.
Kayle: Yeah, yeah. He was like, the doctor. We practically worshiped him growing up because he would just… you know, he was more of a primary care doctor to me than my own primary care was, but also my feelings about him have changed over the years as well.
Brianne: I believe that that could happen. Okay. So yeah, it was always kind of a part of it, and you’d been in treatment this whole time, as you said. So with methotrexate, which is obviously not a gentle medication, as far as these things go, but if you’ve always been on it, you’ve probably always kind of been aware of the trade-off. Do you feel like that was something that you thought about at all? Like, what was medication side effect versus what was symptom, I guess.
Kayle: Yeah. Yes. Sort of.
Brianne: Yeah, it would be different. I would think
Kayle: Yeah. And it’s something that I’ve almost had to figure out in therapy a little bit because I just… growing up I always had chronic pain, but the severe nausea and just feeling lethargic all the time. And you know, I really couldn’t keep any food down. I couldn’t go play outside with my friends. My immune system was next to nothing, so I would… I was in the hospital when I was very little for like, severe bronchitis, all that jazz. And I always thought… cause I just self analyze a lot, so even thinking back like, I definitely… in therapy right now, we’re working on like, trust issues with my parents giving me this medicine as a child. And even though I know logically, it was the thing that they had to do, it still felt like a betrayal because I definitely associated all of my negative symptoms with that injection.
Brianne: Right. And of course, I’m sure as a physical experience that it felt that way because that was the cycle. Yeah. I feel like something that’s so present for me, and has been for a long time, is this thing of like, they just didn’t have the same information that we have now. And that’s… there are so many complicated feelings in that. I feel like I’m now having this conversation more with people, especially as it relates to, spoiler alert, hypermobility that like, the people who, if they had known might’ve made different decisions, often just didn’t know. And I think that kind of translates to so many healthcare decisions that our parents have to make where it’s like, “Well, do I think they were acting in good faith? Yes, I do. Does that impact how hard it was to live through it? No, not really.” Like, it’s a lot to hold
Kayle: Yeah. Yeah, definitely those feelings got a lot more intense with my surgery. Yeah.
Brianne: Okay. So that was kind of the status quo for quite a while, was all the things that you’re describing, both the actual chronic pain and then the medication and the side effects and the medication and the complicated interplay of those experiences. And so, at some point something happened and did something happen suddenly or gradually would you say now?
Kayle: Physiologically gradually, but in my life, suddenly.
Brianne: Right. Yeah. It’s interesting how often that happens.
Kayle: Yeah. Yeah, I do want to back up for one second, cause I want to preface… later on I’m sure I’ll talk about POTS. When I was like seven years old, I had an incident where my heart rate shot up for no reason, had to see a cardiologist, he was like, “Pfft, I don’t know what’s wrong with you.” And that was just like, another thing that my parents were like, “This is odd.”
Brianne: Like a blip.
Kayle: It was a blip, yeah. But then, fast forward a few more years. I was 12, and I failed my scoliosis screening at school, and they were like, “You know, it looks really mild. It’s probably not a big deal, but you should go get x-rays to check it out.” And I did at my primary care, and when she came back, she looked horrified.
Brianne: Always what you’re hoping for.
Kayle: Yeah. It was a lot worse than anybody had anticipated two major, major curves, and they compensated for each other. So for the most part, I looked straight. I didn’t bend. I actually bend more to one side now after my surgery than I did before cause they could only fix one of the curves. But yeah, I had zero pain in my back. I had the joint pain still, but I had zero back pain and zero symptoms of scoliosis, and they were like, “It’s really, really bad. Like, you have to get a back brace or surgery, like now.”
Brianne: Yeah.
Kayle: So.
Brianne: Something that is so loud about that now… about just being told something like that, is like, I feel like if I didn’t know anything about chronic illness, so like… I don’t know, five years ago for me, if someone was like, “Hey, we found out this structural thing about your body. It causes a ton of pain. If you’re not in that much pain right now, then you’re lucky because if we intervene, we can prevent it from escalating to the point that it will get to.” But like, that entire logical premise is faulty since it didn’t check in with how… like, it didn’t confirm that your experience aligned with that interpretation. Did that make sense? It happens with other stuff too. Like, it’s a pattern.
Kayle: Yeah. Yeah. It was definitely… that whole experience is where my PTSD diagnosis comes into play, and a lot of it is from feeling that lack of control of my own fate, especially because it went so horribly wrong.
Brianne: As we will get to.
Kayle: Yeah. And you know, my mom still holds a lot of guilt about it. She… of course, she didn’t do anything, but of course, with hindsight, she’s like, “But If I knew, I could have done list, I could have done that.”
Brianne: “If I had known everything I know now…” Hardest statement ever. Yeah.
Kayle: Yeah. Yeah.
Brianne: Okay. So at the time they were like, “Your imaging tells us that this is actually a really big problem and so either a brace or surgery are your main options, because like, the scope of this problem is severe, and intervention is urgent,” kind of, was the message that you guys got. Yeah. However that happened, I’m sure you’ve thought about it a lot, so that doesn’t… the details don’t matter as much, but ultimately you decided to get surgery. Did you decide kind of quickly or did you go through bracing first?
Kayle: I did go through bracing first, and it was miserable.
Brianne: Like, it was painful?
Kayle: It wasn’t even super painful. It was just really uncomfortable. It was clunky. It took up my whole torso and then some, so like, when I sat down on a chair, you could feel it clang against the bottom of the chair. I had to get like, an entirely new wardrobe, so it could fit over it. It’s not the type of wardrobe shopping that I enjoyed, to be honest.
Brianne: Did everybody ask you if you had read Dina by Judy Blume.
Kayle: No.
Brianne: You’re younger than me, so this isn’t… I’m young for Judy Blume. Anyway, the lead, she wears a back brace. I don’t remember… It might be a terrible book in other ways now. Like, it might not have aged well in a variety of ways, but it’s a dated cultural reference from probably the eighties. So that’s great. Sorry for the diversion. Okay. You’re wearing it. It was a hassle. My cultural reference for that is Dina.
Kayle: Mind you. I was in eighth grade when I was wearing this back brace. I was a child.
Brianne: Yeah.
Kayle: And it was… I don’t even remember how long. It must’ve only been a few months. I went back for a checkup, and they took another x-ray and they were like, “It’s getting worse. The curve is getting worse. So the brace isn’t working, so we have to do surgery.” So ultimately the decision was kind of made for me because before that, when I was day to day with the brace, I was like, kind of fantasizing about having surgery because they told me I’d have to wear this brace for two plus years for like, 20 hours a day.
Brianne: Yeah. And you were like, “It sounds like the easy way.” Not the easy way… but like, yeah.
Kayle: But yeah, it sounded like the easy way. Especially cause back then, other than the arthritis, everyone was like, “You’re young. You’re healthy. You’ll heal well.” You know, I was like, “This sounds great. I can just go in…” I mean, of course I was terrified even thinking this, but I was like, “I can just go in, get it done. I’ll be recovered in six weeks, and I can move on.”
Brianne: Some people probably have retained this, I know you’ve retained it because we’ve kind of talked about this before, but I just get really faint really easily. So I might participate strangely in this conversation, but I’m going to just tip my headphones so that I have the option of giving my ears, a break if I need to. So as much, or as little you want to say about it? Definitely like, I think kind of the technical explanation, probably people definitely appreciate, and I’m just… my like, syncope triggers are all over the place. So they’re… It’s impossible to tell someone how to work around them because then you’ll be doing it and I’ll be like, “No, not that! Don’t compare your spine to a banana!” Anyway. Okay. So that’s just the warning if I get weird.
Kayle: All right. I’m prepared.
Brianne: Okay. So, things appear to be progressing quickly, surgery is highly advised, like, now’s the time.
Kayle: Yeah. Yeah. So we scheduled the surgery for that summer, so I had a few months to finish out eighth grade with a bang and get ready for surgery. My parents even took me to see Lady Gaga in concert for the first time like, a few weeks before my surgery.
Brianne: Yeah.
Kayle: So they tried really hard to make sure I had like, good memories tied to it. Yeah. I don’t, I don’t know what you want me to say about it. The day of the surgery came.
Brianne: So what was the intention of the surgery, one? What is their intention when they go in to fix scoliosis? What is the like, logic of what they’re doing? As much as you want to talk about it cause I also don’t want to make you like, dive into the worst parts.
Kayle: Yeah. I guess the most gentle way to put it is they try to straighten out your spine with hardware reinforcements.
Brianne: Okay. Yeah. So that’s what they are intending to do. And how were you like, immediately after the procedure itself? Or how did… what was your experience? As much as you would like to talk… caveat, caveat, caveat. I want to move through without getting too into any of the things that we could get too into.
Kayle: Yeah, so it was terrible.
Brianne: So like immediately?
Kayle: Immediately. It was absolutely terrible. Yeah. They originally gave me morphine, and I ultimately had an adverse reaction to it. It gave me like, the worst migraine I had ever experienced in my life and did not touch my back pain at all. Just to give everybody kind of an idea of how much I was stretched, over the course of a nine hour surgery, I grew from five foot, two inches to five foot, six inches.
Brianne: That’s a lot. Yes.
Kayle: It’s a lot. So my center of gravity was off. I lost a lot of things that should not be lost, and it made recovery very, very difficult. It’s eight years later. I’m still not… Oh my God. Has it been 10 years? 10 years later.
Brianne: Was it just the 10 year anniversary? Yeah.
Kayle: Yeah. Yeah. It’s been 10 years. Okay.
Brianne: Time.
Kayle: It was eight years between my two surgeries. That’s… yeah. Because what ultimately hit the recovery very hard was that the hardware broke, so it just didn’t heal properly.
Brianne: Yeah. And so, it didn’t make your life more comfortable, to understate it just really incredibly, as it was intended to.
Kayle: It completely, you know, my PTSD brain still gets in there, and I’m like, “It just completely ruined my life.” I had difficulty finishing high school. I really kind of got depressed because I just felt so shitty all the time. I was on hardcore medications while going to school, all in honors classes for the first time because it was high school. And it just… that’s really when I started to like… my relationship with my health got a lot less healthy.
Brianne: Yeah. A lot more… even more fraught. Okay. So that would have been a lot in all kinds of ways, as you have said. And of course like, your pain would have been much more, the drugs are interfering in all of these ways that you just described. Were you having… do you, in retrospect think that you had any other drug reactions during that time? Like, do you think that there was a component about that going on?
Kayle: Well, I will say that my liver has been not the happiest camper throughout my life, and this is something… I actually forget about this part sometimes. After my surgery, they actually had to stop all of my arthritis medications because my liver enzymes started rising, and my team felt like it was more pertinent for me to have my pain under control at that time. So they kept the pain medicine, dropped the arthritis medications, but then I started getting the arthritis fatigue.
Brianne: Right. Yeah. So all of a sudden like, you’d already been… I don’t know if managing is the right word when you’ve been literally managing it your whole life, but you’ve already been managing this one thing and all of the kind of cognitive overhead that it takes up, even if you’re not making all the administrative decisions. And now you have like many more layers of that, of like, thinking about how medication impacts you, thinking about how what’s going on in your body impacts you. Paying attention, ignoring it. Like, it takes up of space. Okay. And so that obviously was hard. Do you feel like it was kind of stable for awhile, if that makes sense? Like, you were… I don’t know how you would have even phrased this. I’m not trying to like, miscategorize it, but like, you were recovering from surgery at one point. Was there a time and a transition from thinking of it as like, “I’m recovering from surgery and it’s hard,” to like, “This might be hard for a lot longer?” I guess if you found out that the hardware was broken, that probably really sped up that process.
Kayle: Yeah. I think that… I don’t know. It was definitely like… I had a bad feeling for a while. Even back then, we entertained the idea of like, “I wonder if we could even sue for…” the word’s escaping me, Brianne. What’s the… malpractice!
Brianne: Malpractice, medical negligence. Yes.
Kayle: Yeah. Because I kept going back to my surgeon and saying, “I have back pain every day. I’m missing half of school. My grades are dropping. I just lie in bed all the time. Like, I can’t do this.” And he would just kind of be like, “I don’t know what to tell you.” And he would just leave it there. He would try telling me that I’m having some sort of inflammatory reaction because of my arthritis, but my rheumatologist would be like, “He has no idea what he’s talking about. No.”
Brianne: That doesn’t make sense.
Kayle: Yeah.
Brianne: One thing that’s so hard about that context too, is like, realizing that systemically, that doctor is probably at that point, more worried about covering his own liability than he is about just helping to find the root of the problem as quickly as possible, and like, this is a problem for so many reasons. I don’t think that it’s excusable in any way, but like, the system is set up to prioritize that. So that I imagine that doctors who like, really care and feel deeply about this, also don’t have like, legally covered ways to support people. And that’s such a big, huge problem because like, bodies do weird things sometimes, in general. I’m not saying that as like, what I would want to say to your surgeon specifically.
Kayle: Yeah. At this point in my life too, I still tried. I was starting to lose faith in doctors, but I still… I wasn’t quite at the point where I was like, “I don’t trust any of you anymore.” So I would take what my surgeon said with a grain of salt and be like, “Maybe it is just my immune system being weird.”
Brianne: Yeah. “Maybe my arthritis is related to the injury in some mysterious way that we’ll learn about later.”
Kayle: And that’s kind of every like, weird blip that I had my entire life, that was kind of the go-to answer. Like, “You have rheumatoid arthritis and your immune system is wild.”
Brianne: “It’s wacky!”
Kayle: Yeah. That’s when I started to think like, maybe, you know, “If I’m going to have arthritis for the rest of my life and this is from my arthritis, maybe I will have back pain for the rest of my life.”
Brianne: Yeah.
Kayle: And I started to think about it a little bit, but still hold hope. And then finally three years after my surgery, he took an x-ray and saw the broken hardware. And I think that’s kind of where I lost it.
Brianne: Yeah.
Kayle: Yeah.
Brianne: Yeah. Not to like, project onto your experience, but it’s a really classic example of there being a mechanical problem that you were feeling and verbalizing over and over again, and nobody would look. And it’s like, usually… not that this is a good thing, usually it’s not that like, on the nose of a metaphor.
Kayle: Right!
Brianne: Yeah.
Kayle: Right?
Brianne: Yeah.
Kayle: It was just amazing to me and to my parents that it took that long. We were happy to finally have a little bit of closure, so to speak because you know, the story continues. But in that moment we felt like we had some closure. Like, this just happened and, you know, shit happens.
Brianne: Right.
Kayle: And my parents and I continued on for years after that, just like, “Kayle just has like, the worst luck when it comes to health stuff, and these are all unrelated. And it just kind of sucks, and it is what it is.”
Brianne: Yeah. Yeah. Which I think is an alarmingly common outlook. Just like, “What a weird series of coincidences that you would have all of these interesting unrelated experiences.” Yeah. And it’s like, “Just make peace with it.” Now that you know, sort of, you can kind of… one thing that I really relate to about that idea that I’m thinking through again right now is like, when there are individual incidents kind of, like, after the incident, you’re like, “Okay, I’m back to stability, and I think of that as an isolated incident. So I can focus on framing my life that way.” And that kind of acceptance, when you expect like, whatever baseline you have to be your continuing baseline forever. Like, “All those blips are in the rear view mirror. No blips in the future. Why would I expect that?” That’s a really specific feeling, is what I’m trying to say, that I recognize now. It’s weird in retrospect.
Kayle: Yeah. It’s… also the hindsight… with therapy, I just also realized that like, I was deep into like, PTSD at this time. I still would have panic attacks. I would have nightmares about that surgery specifically. And I… it was probably amplified too, that I was still carrying some prolonged trauma from the methotrexate. I couldn’t look at the color yellow for close to 10 years because the medication was yellow, and I’d look at the color yellow and I, yeah… I couldn’t.
Brianne: Yeah, your body recoils, our nervous systems are freaking complicated.
Kayle: So it was just a lot, and part of me definitely shut down at that point and just like, went into survival mode.
Brianne: Yeah.
Kayle: Yeah.
Brianne: Yeah. I think like medical PTSD, surgical especially, but medical PTSD in general, it seems pretty clear, is so under diagnosed, under acknowledged. This is why I’m like, always thinking about time travel jokingly, because it’s like, we need so many better resources for people 10 years ago, 20 years ago. And also people now, obviously it’s still worth working on. But like, yeah, so many things about it are like, poorly contextualized by people who haven’t experienced it and have no way to be like, “Oh yeah, some of this shit is really hard to place in your head, and that is traumatizing as hell.” Like, how do we make that a normal part of conversation? You don’t have to have the answer though.
Kayle: You made me think about the one time I did like a partial hospitalization and intensive outpatient program, and that’s where I was sort of officially given the PTSD label. And I remember being on a phone call with one of the counselors and my father… because my mom was always more involved in my medical stuff because she was a nurse and my dad… he was there, but he never really understood the gravity of it, I don’t think. And he definitely is not the most informed when it comes to mental health. So he was just kind of like, “Isn’t PTSD for people who go to war? Like I don’t… I don’t really understand how this works.” Yeah. It was… it’s a learning process, I think is what I’m trying to get at. Understanding that like, it’s okay to like, recognize these things as being traumatic because they are traumatic.
Brianne: Yeah. And there’s like… there’s something so true about that, that we kind of… or for so many of us, our initial education about PTSD is through the media, and it’s about veterans. And yes, absolutely, war is a very traumatizing experience. But like, our bodies and our nervous systems don’t always know the difference between types of threats, for one thing. So like, it’s possible to be traumatized in a situation that may not have actually been threatening, which does not relate medical trauma, and also like, many other experiences are actually life-threatening in ways that kind of never gets tracked. And of course that would be traumatic, but we don’t learn to think about it that way. It’s hard. This thing that you’re talking about right now is a big process of like, “But I’m not a soldier! Could this really be serious enough that I should be treating it like the serious thing that it is?” It can be an overwhelming process too, kind of. By the time that you got the diagnosis, were you like, “Yes! A diagnosis!” or were you like, “Oh boy, I have a big paradigm shift coming to kind of integrate this into my understanding?”
Kayle: I was kind of relieved. I had been diagnosed with anxiety, just generalized anxiety for years before that, and while I do have generalized anxiety, I could always tell that it stemmed from something, and being in treatment for PTSD for the past… God, two years, three years? You know, you really break it down into those core beliefs of losing control, literally feeling like I’m going to die after the surgery, distrust, not trusting other people, not trusting my own decisions because I had the narrative in my mind that if I was better with my back brace, I would never have had to get the surgery. And that colors just everything.
Brianne: Yeah.
Kayle: Yeah.
Brianne: Yeah. I feel like hyper… hypermobility, whisper cause we haven’t gotten there yet. There’s such a strong theme of like, so many people can look back at all kinds of choices and like, they could kind of be recreational or they could be medical or they could be whatever, and be like, “Oh, I now understand why that was a bad choice, but that doesn’t actually give me a lot.” This is the time travel thing. “That doesn’t give me a lot of agency.” Like, that analysis is sometimes helpful, but sometimes like, adds to the complexity of letting yourself off the hook a little bit, if that makes sense.
Kayle: Right, Yeah. It was definitely difficult. Actually what I was just going to say kind of transitions into hypermobility, so might as well just segue there. I was also hypermobile my entire life.
Brianne: As it turns out.
Kayle: And I remember the rheumatologist… it was on my medical records since day one, hypermobility. All of my clinical notes, he mentioned that I’m hypermobile, everything starting in 1996.
Brianne: Yeah.
Kayle: And ultimately, after I left high school and I went to college, different new environment. And I met somebody there who had EDS, Ehlers-Danlos syndrome. And what was really weird about it was that I also knew somebody in high school with EDS, and I was like, “Oh my God. Like, I know somebody else who has that.” And we would talk a lot, and I would relate to their symptoms a lot, but Brianne, even then, I was like, “Really weird how much I relate to these things.”
Brianne: “We have so much in common! People with RA, people with EDS. That’s what it is.”
Kayle: It’s so funny thinking back about it. And you know, I’m actually one of those rare people who had a doctor say, “Have you ever looked into EDS?”
Brianne: That’s unusual.
Kayle: Yeah. It’s really unusual. I had another fluke in my blood work, another blip, for some clotting factor. So many blips in my blood work that will come back normal like, a week later. Long story short, had to see a hematologist, a blood doctor, and just going over my medical history with her, she was like, “Wait a second, like a lot of these symptoms…” in fact, I’m not even sure… I don’t think we even got to the hypermobility part yet. And she just asked me like, “Are you hypermobile by any chance?”
Brianne: Yeah. “You have a lot of these other complications that tend to orbit this one thing. Interesting. Interesting. Yeah.”
Kayle: Yeah. I was like, ” Oh my God,” because even then like, I knew two people by this point who had it. I knew what it was, and I hadn’t really entered the disability community on Twitter yet, or anything, very much on my own.
Brianne: Can I pause that for just a second to did you have… up until you found the disability community, was there any media representation that you did find that resonated with you? It’s okay if the answer is no.
Kayle: So, yes, but also like, recognizing that they’re not good.
Brianne: Yeah. Yeah, I know, totally understand there. I just watched Everything’s Gonna Be Okay, literally this week, which has autism recognition, which I do not have an autism diagnosis, but anyway, I was in gifted, blah, blah, blah… it’s a type of special ed. And so watching it, I was like, “Oh, God, this is somehow like really great to watch as much as I can evaluate that as a person who grew up differently, and also like, they use so much ableist language still, they’re still talking about functioning labels. Like, you know what they’re getting and what they’re missing.” Anyway.
Kayle: Yeah, for me it was The Fault in Our Stars. I related a lot to the chronic illness part of it. I’m like, “Oh, they’re chemo makes them puke, my chemo makes me puke.”
Brianne: Yeah. So many of the things are there.
Kayle: Yeah. And just like, having the dynamic between the friends in the support group, just being completely… like, I could not imagine having that type of relationship with a non disabled person. Yeah, but obviously that has a whole other set of problems. But I was very much, besides my friend at college, I’ll even give a shout out, Rabbi Emet Tauber. He actually passed away, but completely changed my life, my direction, everything. So he was kind of the person that I went to with all of this, and he helped me through the diagnosis. The hematologist ultimately gave me a number for a geneticist, and I had to wait like, seven months for an appointment. And finally the day came and it was like, a three hour long appointment, complete full exam, spending hours in his office, just telling him about my medical history. And it was kind of funny because he came back and was just like, “Okay, so yep. Here are your results.” And like, “Here are all the doctors I’m going to send you to.” And so I was like, “Wait, so do I have EDS?” And he was like, “Oh yeah. I’m pretty sure.”
Brianne: And you’re like, “This is a weird diagnostic process! Like, shouldn’t you be clear about what that means?” Can I ask the questions about that then? You probably know more now than you did at the time. So it was a three-hour exam. Was it someone who like mostly only works with EDS people or was it just like everyone?
Kayle: He was an EDS specialist.
Brianne: Did you have genetic tests done? I said that weird cause I forgot all the words in the sentence while I was talking.
Kayle: Yes. I did have genetic tests done, except for obviously hEDS doesn’t have a genetic marker yet, and also classical-like EDS, while it does have a genetic marker, it is very super duper rare in terms of testing. The testing for it is really rare, and so I couldn’t afford to do that one, but I tested for the other ones just to rule them out. And of course, they all came back negative. I was still very comfortable going on with my diagnosis though because even before I did the genetic tests, he said to me, “Based on your symptoms, I think you have either hypermobile EDS or classical-like EDS, the two ones I can’t test for.”
Brianne: Yeah. And I think it’s important to say that I think that none of the genetic testing is totally conclusive because even when they’ve identified variants, like for classical or for vascular, they’ve identified some variants, but like, they’re still finding people who have the symptom profile that they used to define the subtype who don’t have a known variant. So like, the genetic stuff is so interesting, but also like, such a mess for patients at the same time.
Kayle: It really is. I did have a few results that came back as like, a variation but not of clinical significance. And I’m like, “What does that even mean?”
Brianne: Yeah. I have not had a genetic testing done, but I did… I don’t care about privacy, I guess. This is not advice. Don’t do this. But I got 23andMe and then like, ran the raw data through couple of different sites that let you do that LiveWello, I think, yeah. And LiveWello has like, an EDS thing, and it’s not diagnostic obviously, but I’m like, “Okay, that’s a lot of variance on one relevant gene. Like, is that relevant information? I don’t know. We’ll find out one day maybe.”
Kayle: Exactly.
Brianne: Okay. Basically, he was like, “Cool, so you don’t have any of the known variants, but like, definitely you should pursue care for this because this is also a clinical diagnosis.” And this was when you were in college, did you say?
Kayle: Yeah. I would have been 20
Brianne: Okay. And then were you able to start specialized care relatively quickly? I mean, I know that treatment is kind of like a concept more than…
Kayle: Yeah, the main thing I stuck with was the cardiologist, because at this point like, the POTS was completely just out of control. I still didn’t have a name for it.
Brianne: Right. Standing was bad.
Kayle: Yeah, standing is bad, just bad all the time. I would talk about it feeling like I’m walking through like, glue or something like, I just feel bleh, so I went to see the cardiologist. He wanted me to see a few other specialists that I may have had like, one or two appointments with, but, you know, I was also still in school at the time.
Brianne: Yeah.
Kayle: Yeah.
Brianne: Yeah. And also like, now this is going to be a, such a hypermobility-heavy batch that I’m like, not getting as explanation-heavy as I might otherwise. But like, the thing about EDS is that there aren’t targeted treatments at this time. Like, PT is applicable for some people and very helpful for some people and POTS management or pain management. Like, it’s all management related.
Kayle: And I think that the biggest gift it has given me, because, you know, like you said, an EDS diagnosis doesn’t necessarily mean adequate treatment for EDS, but what it did help with was the way my doctors approach my care in other areas. I finally felt somewhat comfortable going in for my second surgery to fix my hardware because I had an EDS diagnosis and I could say like, “I don’t care if you think I’m doing fine, give me fluids all the time.
Brianne: Yeah.
Kayle: And, you know, it was a much smaller surgery, but it went a lot smoother.
Brianne: Yeah, I believe it. I mean, without getting too into details about surgeries because I try not to, in my own research even, like, EDS has a lot of impacts in surgery. I mean, it impacts wound healing. It impacts how you process anesthesia for a lot of people. Like, it impacts how you process pain medication for a lot of people. So a lot of standard surgery practices are going to be a very bad experience for someone with EDS, and that is like, since so many people are undiagnosed, under the radar. So in between those two times when you were thinking… when you decided to get a second surgery or however that unfolded, had you started to think back about more of like, “Oh, this might explain a lot about why the first one went poorly?”
Kayle: Oh yeah.
Brianne: That majorly clicked into place to make it so that you were like, “Okay, and also a second surgery might fix some of these problems in a way that like, we can plan for.”
Kayle: It was actually… even before the appointment with the geneticist, his assistant had sent me a questionnaire, and it was like 15 pages of questions. And just going through it, that was kind of my initial like, education about what all of this really meant, was going through this questionnaire. I think that might’ve been the first time I really even had an introduction to POTS because I was just thinking about hypermobility and pain, and then this questionnaire started asking me, “Do you feel dizzy when you stand up?” And I was like, “Yes.”
Brianne: “All the time. Fun question.”
Kayle: “Do you bruise easily?” And I looked down at my legs, and I had like 10 bruises on each leg.
Brianne: Yeah.
Kayle: So, yeah, and it really started between that questionnaire, talking it over with Emet, and also talking to my mom, it really started to all sort of fit in together.
Brianne: Yeah. It’s paradigm shifting, like with POTS as an example. Like, if you’ve never had a POTS related super crisis, you’ve still probably been really heavily impacted by it for a long time and getting like, the lens to see that, it shifts so much. It’s wild.
Kayle: Yeah, the POTS. Oh my God. The POTS especially, being seven years old and having a cardiologist tell me like, “You’re absolutely fine.”
Brianne: Yeah.
Kayle: And that happened more than once because I had another episode. This would have been before my scoliosis diagnosis. In gym class, we were doing a lesson checking our pulses, and I was like, “My pulse is like 130.” And they were like, “You’re wrong.” And they checked it, and they flipped out, and I had to see a cardiologist again. And once again, he was like, “You’re fine.”
Brianne: Yeah.
Kayle: “I don’t know why you’re here.”
Brianne: Yeah. It’s weird with the blips when you know in retrospect, and you’re like, “Oh my God, this is mediated by so much other weird stuff that like, now I would control for, for a test of like, ‘How hydrated am I? How much salt have I had? Like, if mast cells are a factor, how well managed are my triggers?'” We have like, no control over dysautonomia, but we also have a lot of control over it like, when you know about it. And so it’s weird too, to just think back and be like, “Oh my God,” like, “an informed doctor would have known those things and would have understood that an isolated incident and then me being fine in the office isn’t disqualifying in literally any way, and in fact is defining of the condition.” Like, “What was going on?” Yeah.
Kayle: Yeah. At this point with the EDS diagnosis, like, it was very bittersweet. I definitely felt a lot of relief, finally. Like, having something to be like, “Okay, this is it.” Like, I had always had the arthritis, but something else was always there. But at the same time, the anger really started coming out then because I was supposed to be seeing some of the best doctors in the country.
Brianne: Right. Yeah. And when you had been in Boston, even at that time, like, seeing people for one condition… I know that’s not where you went to college, or I think that’s not where you went to college, but like, moving between major hospitals would be pretty formative for this, right?
Kayle: Yeah. It was. I moved from the Boston area to New York for college.
Brianne: Also known for its medical facilities.
Kayle: Yes. Yes. It was the new set of eyes is what my mom and I would talk about. It was the new set of eyes on my body. I didn’t always accept that explanation. I remember after I got the EDS diagnosis, I actually called my old rheumatologist, and I spoke to his nurse and I said, “I just wanted to let you guys know that I was just diagnosed with Ehlers-Danlos syndrome and like, I wanted you to know. So if you see any other patients with these symptoms, like there you go.”
Brianne: Yeah.
Kayle: And her response was like, “Really? We serve a lot of people with EDS.” Like, “Wow, I never would have known.” And that just pissed me off more.
Brianne: Yeah.
Kayle: Like, they knew. It had nothing to do with having a fresh set of eyes. They had patients with EDS. They knew the symptoms.
Brianne: Yeah, they weren’t looking.
Kayle: Yeah,
Brianne: Yeah, it’s hard. EDS in it’s own very specific way, as it is becoming like, more well-recognized, relatively speaking, we’ll say, and like probably will be diagnosed a lot in the next couple of years if those diagnostic pathways get like, shaken a little bit… like, there’s so many people, and most of them have so many major blips in their history. Like, what is going on in the medical field that this isn’t… nobody’s tracking this. I see so many conversations about this now among patients and like, not just in my circle around No End in Sight, like, a lot of people are talking about this. But not a lot of like, healthcare decision makers are talking about it, and it’s like, an entire systemic problem. It is really rage inducing
Kayle: It is. It really is. Looking back now, I understand how this is a little bit of lateral ableism, but I would think to myself like, “How could they think I was faking?” Because I already had a diagnosis. They knew me as a sick person. How could it be so far fetched that something else was wrong? I would get frustrated at people who had been healthy their entire lives, but suddenly have blips and get a diagnosis and I’d be like, “What the hell?”
Brianne: Yeah.
Kayle: “Why? Why?”
Brianne: Yeah. A really weird injustice that I’m now more aware of is like, the longer you’ve been sick, the less likely you’re able to articulate how difficult it is. If you’ve been sick your whole life and un… not undiagnosed, but if this symptom cluster has been undiagnosed, so you don’t have a name for it, or a vocabulary for it, or a management plan for it. If you’ve been living through it for 10 years, one, it’s probably pretty normal to kind of catastrophize about it, but if you actually try to describe it, you’re probably going to not describe it very well, because you don’t know which part of it is like, abnormal anymore. You’re just like, “I think that this is normal, but the weird…” like with POTS, you know, it’s like, “Standing up presumably feels terrible for everyone, so the only symptom that I report is if I black out.” But like, the blacking out is the POTS, the whole thing is the POTS. And so if someone developed it suddenly… this is something that strikes me about post viral ME, not in a good way, but like, there are some people who don’t recognize symptom patterns if they develop ME, occasionally, and it’s like, that must’ve been really different for you to be like, “Standing is terrible now, and it never was before. And I like… even if the doctors don’t believe me, I have no trouble believing myself.” Like, there’s a thing about that. I’m very long-winded right now as my sleep isn’t terrible.
Kayle: Yeah. I go back to the arthritis and how growing up, everything was always just pushed under that. Even when it didn’t make that much sense, like, “The POTS fatigue? That’s just fatigue from the arthritis. The joint pain? That’s just joint pain from the arthritis.”
Brianne: Right. And the joint pain would be very easy to categorize… like, that would make a lot of sense, except that it probably didn’t make sense.
Kayle: And like, even the stuff that didn’t really make sense, my doctor would just write about as if it was completely normal. And it was like, a little gaslighting because years later, years after my EDS diagnosis actually, I went through old clinical notes, and I mentioned this earlier, but like, hypermobility is mentioned in every single one, every single one. And talking about like, my range of motion and just talking about how overly flexible I am and how I have joint pain. And he thinks that’s because of the hypermobility, because my lab work is okay. And it’s like, all the dots are there, but like…
Brianne: Yeah. “Just connect to them. Please. Please connect them.” Yeah, that’s a hard thing.
Kayle: Right. And so growing up because you know, my mom would always encourage my involvement in my health. He would send the clinical notes, and we would read over it together. And it just became like a fact, like, “Yeah. Kayle’s hypermobile.”
Brianne: Yeah. Yeah. I think like, the earlier versions of like, people who were told they were a double jointed, like that’s definitely, when I was a kid, I was like, “Yeah, I’m double jointed.” Like, that’s not a thing!
Kayle: Yeah, my parents to this day will laugh about how I used to win twister competitions at barbecues.
Brianne: These were flags. They were flags the whole time. Okay. So, yeah, so like, diagnosis comes with all of this stuff, and you’re like, navigating this. And then you also decide to get another surgery, and it was much improved because it was like, informed by all of this stuff, this information that you now had. And was the surgery also while you were in college?
Kayle: The summer between undergrad and grad school. I did it. Yeah.
Brianne: Okay. That’s when I got my wisdom tooth out, which is a much less serious surgery. Yeah. So you were like, “Okay, now’s the time to deal with it while I have like a little bit of space.” And how… cause I know there’s like a problem in here somewhere… how was navigating school while you were going through… I mean, kind of the diagnostic process and the surgery process, like with a disability? At what time did you really start thinking more about how your conditions were impacting your kind of relationship to academia or how you were able to participate?
Kayle: So like, Maybe 50% was from my experiences with diagnoses, but the other half was definitely having the influence of Emet in college.
Brianne: Yeah.
Kayle: I can’t even overstate that enough.
Brianne: He’s your disability doula.
Kayle: Yeah. It was in college that Emet had founded the disabled students union at our school, and he really introduced me to like, the fact that disabled people have a history, and like, I genuinely like, 19 years old… I had used wheelchairs in the past like, while on vacation, but for some reason I would still think to myself, “Why would I use a wheelchair?” Like
Brianne: Like in normal life.
Kayle: Yeah, I can walk, like, “Why? I don’t need a wheelchair.” Also didn’t have the best language back then, largely from internalized stuff, but that education and the space that he gave me to sort of process the diagnostic journey I was going through, that’s when it really started to blossom in my mind.
Brianne: When you like, start looking around you and you’re like, “Oh no, this is terrible too.”
Kayle: Exactly. You know, I filed my lawsuit against my undergrad in sophomore year, and Emet had actually helped me with that as well. And in school for media studies, I ultimately did my senior project on like, disability and cyborgs and technology and all of that stuff, so having the chance to like, absorb all of this information that I had never done in the past, it was amazing.
Brianne: Yeah. And you’re like, “Cool. Some of the stuff about how school is, is terrible, but like, access to this information and community is really like, great, generative.” Yeah. And we don’t need to talk about the lawsuit a lot, because that is definitely like, very both topical and not topical, but will you explain it just a little bit, because I know there are so many people who just have trouble with chronic illness in school. So how did that come about, or kind of what are the like, top points that your brain can put together at this moment?
Kayle: Yeah. So, it was a nonprofit law firm, disability rights law firm. And they were already… they had years of like, testimonies and documentation about the lack of accessibility on campus. They were getting ready to move forward. And they had plaintiffs, but they needed like, a student representative cause it was a class action lawsuit and they had no one to represent the student body. So that became me because I was going through some trouble with the administration accusing me of faking my disability, so even though that was not really part of the lawsuit, I would definitely say that the anger from that situation powered me through to actually do it. But yeah, it’s mostly for architectural barriers on campus because it’s very not ADA accessible. When I met Emet for the very first time, it was because he was having trouble pushing himself up one of the hills in his wheelchair and I helped him.
Brianne: Yeah. You were like, “I see. This is definitely going to be a problem.”
Kayle: Yeah. It’s been going on for four and a half years, and it’s just been in and out of settlement discussions, in and out of the courts, lots of motions, lots of delaying things.
Brianne: Yeah. That’s the part where I’m like, legal stuff that we definitely don’t have to get into, but still happening.
Kayle: I do want to say that like, I was definitely very lucky. It is so hard to file a lawsuit. And these people literally came to me. They came to me cause I was causing a stir, sure.
Brianne: Right.
Kayle: But they came to me. I had no intention. I don’t want to say I didn’t have any intention cause I did think about it, but I thought it would be really not possible for me to actually find or afford a lawyer.
Brianne: Yeah. And so like, as a relevant aside, like, if anybody listening talks to a student who has access problems in university like, suing the university isn’t a first-line step that most people have access to, even though it would probably be great if they did. I’m not putting that down, but like, it’s not a typical situation that there’s like, kind of a lawsuit waiting to happen. Unfortunately?
Kayle: Right. And here, this was a lawsuit waiting to happen. And I was just in the right place at the right time, depending on how you look at it.
Brianne: Right, right.
Kayle: In terms of the lawsuit, I was in the right place at the right time and talking to the right people, and it just kind of happened. And it’s still something I’m really proud of. I don’t want to detract from the fact that like, I’ve spent four and a half years.
Brianne: Right. And I don’t mean to say that you were not a part of it. Yeah, yeah.
Kayle: And it’s very… being deposed and questioned about the validity of certain experiences is very hard. Especially when you know, you get questioned about that stuff a lot.
Brianne: Right. Especially when that’s like, central to what has been one of the things that’s been so difficult about the experience, not academically, like, about the medical experience too. Yeah.
Kayle: Right. And yeah. It hasn’t been easy but, like, I don’t want people to also think like, “Well, if she can do it, I can do it.” I want to encourage people to like, exercise their legal options where possible, but like, it’s really hard to do it. And like, don’t yourself up if you don’t have access to those options.
Brianne: Yeah. Yeah. And that makes sense. It’s hard because sometimes… whenever we see success stories, it’s motivating as it should be, but it can also be kind of sad. Yeah. Like, “Why can’t I get this much leverage behind…” And I think this applies to so much disability related stuff and it’s like, you know what, unfortunately right now, not defending the status quo, but like, unfortunately right now it’s a lot like diagnosis in medicine. A lot of it is luck. A lot of it is like, being in the right place at the right time for traction to happen around you, that you are involved in, whatever, whatever, but like, there needs to be both. Yeah.
Kayle: Right.
Brianne: It’s hard. So that’s still happening, but we are sort of approaching the present, and I know you’ve kind of been like, reflecting as we go, which is wonderful. So have we missed anything… so you had the surgery after undergrad and then you started grad school. How was that transition and kind of, how have things been since then? If that’s a good question.
Kayle: I still have blips. I… sometime in the past few years, don’t even remember what year it was diagnosed with autoimmune thyroiditis? Something… Hashimoto’s and you know, fibromyalgia, and ovarian cysts and like, random things that can still feel overwhelming from time to time. But doing pretty well, finishing up grad school this… next week, actually.
Brianne: Oh, wow. That’s exciting.
Kayle: I’ll be done. Will have my degree in disability studies. Switching from undergrad to grad school was great. It was great. I don’t know how else to say it. Switching from high school to college was an improvement because there was a little less structure. I didn’t have to go into class every day. Switching from college to grad school was even better because my grad school was completely online. Completely online and doing only disability studies and yeah. I just… I thrived.
Brianne: Yeah, you were like, “And all of a sudden one, I know more about what my body needs and like, perhaps the choices I can make to manage discomfort and two, this environment is much more supportive.” And I’m sure the disability studies departments are not always great at accommodation, but one also hopes that they will be slightly more aware about accommodations.
Kayle: Definitely. It’s actually great. There are quite a few disabled professors in the program, so it has made life a lot easier.
Brianne: Yeah. Yeah. Once you uncover that like, people have found a way to live in the world that’s just very different than how you were taught to live in the world, you’re like, “Oh, I could just make different choices, and it wouldn’t fix everything, but it would like, make a few things a lot less stressful.”
Kayle: Yeah.
Brianne: Yeah. Yeah. So you’re about to finish grad school in a week, and this will come out after, so you’ll be finished grad school. Congratulations in the future past when this episode comes out. And then are you looking at, because it ties in so much, like, disability studies, of course, is rooted in both theory and personal experience. Are you looking to kind of merge those as you move forward? How are you thinking about work right now? As much as that is like, a nice thing to talk about and not a stressful thing to talk about.
Kayle: I definitely put my personal life into like, everything. Kind of funny, at work we just took a leadership quiz and that was like… one of my top traits was the context of things. I like to know contextually, and I like to provide context. “I think these things because of these experiences that I had.” And my motivation starts with wanting to make sure that people haven’t experienced the same level of what I’ve experienced. I say it starts there because people experience things worse than I do, and I’m also motivated to help them. But I’ve thought about law school, but I largely just want to work somewhere in public policy, non-profits, just that general realm.
Brianne: Yeah. You’re like, “Who’s doing this work and how do I find them?” The work is changing very quickly right now, as the government’s been changing so quickly here in the US. So, yeah, obviously that is an area of active transformation in your life right now.
Kayle: Yeah, constantly trying to just absorb more and more information, not just about disability stuff, but just like, how the government works.
Brianne: Yeah. “What do I need to know to do something that makes a difference about things that I care about?” Yeah.
Kayle: Right. Exactly. So, Yeah. That’s kind of where I’m at.
Brianne: And is there anything that you wanted to talk about today that we haven’t gotten to somehow in the muddled conversation? It’s okay if the answer is no.
Kayle: Yeah, I think we actually got to talk about more things than I was expecting.
Brianne: You can cover a lot in an hour and about 45 minutes, like a lot happens. Okay. Awesome. Thank you for sharing your energy to talk to me and precious brain power to share your story. I know it is not free.
Kayle: Thank you for having me. I was so excited for this.
Brianne: I love it. It was so much fun.
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Drew: Thank you for listening to episode 77 of No End In Sight! You can find Kayle onTwitter @kaylejh. You can find me on twitter @fibrofuckboy and if you want to support me directly and are in a position to, I have a Patreon where I post my poetry and other artistic endeavors at patreon.com/darkmagenta. You can find Brianne on twitter and instagram @bennessb, and you can find many more conversations about chronic illness on twitter @RTsFromTheVoid. And don’t forget you can sign up to support the show over at patreon.com/noendinsight. Or, if you want to support the show but don’t have a few bucks to spare, we’d be just as grateful if you left a podcast review on Apple Podcasts. Thanks for listening!