Episode 32: Annie Segarra on Medical Gaslighting and EDS

Episode 32 Show Notes

Navigating a medical system that dismisses your pain ignites a fire to advocate for others who are overlooked.

Annie Segarra is an activist and content creator dedicated to disability rights, body positivity, and social justice. Annie opens up about her deeply personal experience living with Ehlers-Danlos Syndrome (EDS), discussing the emotional and physical toll of navigating a medical system that often dismisses or misdiagnoses those with chronic illnesses. She shares her frustrations with being gaslit by medical professionals and the resilience it has taken to continue advocating for herself.

Connect with  Annie Segarra on LinkedIn and on her website.

Transcript

Lily Newton: Hey, listeners, and welcome to another episode of Everything You Know About Disability is Wrong. Today on the podcast, we have Annie Segarra.

Erin Hawley: Annie is a dedicated activist, content creator, and proud member of LGBTQ plus community. Living with Ehlers Danlos syndrome, she's well known for her advocacy in disability rights, body positivity, and social justice, using her engaging videos and insightful discussions to raise awareness.

Lily Newton: With a powerful voice, Annie strives to make the world a more accepting and accessible place for everyone. Her work continues to challenge norms, and inspire meaningful change, particularly in the realm of chronic illness and disability activism. So Annie is a perfect guest for this show. All of the content she makes aligns so well with what we're doing here. Welcome to the show. We are so happy to have you.

Before we get into the full conversation, let's go ahead and do our audio descriptions. I can start. This is Lily speaking. I am a white passing mixed race person. I have, literally split down the middle half blonde, half brown hair, and I'm wearing my usual black turtleneck and the necklace that I will fidget with throughout the recording. Take it away, Erin.

Erin Hawley: Hi. This is Erin. I'm a white woman, like, kina with red hair, and I'm wearing a blue shirt, and I feel very comfortable in it. So I'll pass it to Annie.

Annie Segarra: Alright. Hi. This is Annie. I am a, I guess, light brown skin, Latina with long, extremely dark brown that it passes for black hair. And right now, I'm wearing it down and to the side, but most likely over this podcast, I will be either braiding it or putting it up, for, like, sensory issues that my hair will cause me. I am wearing glasses and a combination of a black tank top and a soft, like, long sleeve blue shirt. And I'm currently in my bedroom where there's, like, cool ambiance lighting that makes me feel very comfortable, and like a a plant in the corner and little lamps all over the place.

Erin Hawley: I was gonna say I love the environment. It's very pretty.

Annie Segarra: Thank you. Thank you. It's all it's funny how, like, I think for me, you know, the way things look and accessibility always have to be combined. Like, I don't I don't see why accessibility has to feel I don't know. I don't know what's the right word for it. But, like, there is you know how so many elementary schools I don't know if this is true for everyone, but it is true for me. They are designed with, like, concrete walls and fluorescent lighting. And when you walk into an elementary school sometimes, like, it feels like a prison because of that.

Annie Segarra: I I don't know what the right word for it is, but it's like this it is a very, cold environment with, like, cement and fluorescent lighting. It feels like it doesn't have, what's the word I'm looking for? Like, there is no attention being given to it. There's no care being given to it. So all that is to say, yeah, I'd like while I think I really like the way I've set up my bedroom aesthetically, most of the things that are pretty to the eye or or drawing, inviting to the eye, it is also for accessibility purposes. So, like, the different lamps around the room so that I don't have to use the overhead, because that is, like, a big sensory issue. And, I also, for my brain, like to have all my furniture, like, convertible sorry. I hit my mic. Convertible into something else.

Annie Segarra: So, like, the chair that I'm sitting on can be turned into a single size bed and on and on. Like, most of my furniture is, there's there's words for that. But, yeah, transformable into something else.

Lily Newton: I love that. I know we were gonna get into that at some point on the interview, so we can just do it now. But that, like yeah. I get what you're saying of that. Like, for sometimes when people think about, like, universal design or access in general, I do think it's that, like, cold kind of, like, checking boxes of, like, well, this needs to do that. And I don't think people think about, like, the warmth of accessibility, and how how, like, individualized spaces can be.

Annie Segarra: It's a lack of attention and care, and I think, like, there is this kind of unconscious, unwelcome, vibe that there is to that as well. Like, you're lucky that we, created this accessibility for you to enter here because the truth is we don't really want you here, but we have to have you here. So we're just gonna, like, we're just gonna make something up and not really give any attention and care to it. Kind of like the example of when a place has they they're they claim to say, we are wheelchair accessible, but then they they bring you inside the building through the trash can ramp through the back of the building, and it's like, yeah. Yeah. Yeah. You're you're you're really acting like you want me here. Like, I'm welcome here when when you do that.

Annie Segarra: It it wasn't an afterthought that that I might be attending this space using a wheelchair or that anyone might have to roll into the space for whatever reason. And I guess that's what I'm getting at is that, like, it there the coldness of it can feel very uninviting and afterthought. So, like, I think if people really sit down to think about, like, how can we, first of all, make everybody feel welcome, and second of all, make sure that it's not just welcoming in a logistic way, but welcoming in a, comfort and aesthetic way.

Lily Newton: Yeah. I like the idea too of, like, what works for how you need your space to work for your brain to work. Like, because I I'm currently in the process, I of redoing my, like, office space, which is where I record in right now. And, like, I have my one little shelf here that feels like I, like, confined my autism to a single single shelf in the room because I was like, well, it needs to be when I first set this up, it was like, it needs to be very professional. And I got a desk that felt like it was the right desk that should work very well, and it was a lot of shoulds. And now, like, I'm in a much better place in terms of, like, accommodating myself and adapting spaces. And I'm like, I don't actually need a desk. I need, like, a comfy couch that I can, like, curl up into and put a weighted blanket on and be on my lap top.

Lily Newton: Like, I actually Yes. Why would I want like, I have a giant, like, l shaped desk that feels very corporate, and I'm constantly, like, knocking into it or, like, hurting myself on it. And it's like, one day I was just like, wait. Actually, I can redo this. Like, I can make this space look how I want it to. And, honestly, I was very inspired. Erin's Erin, the room you're in right now, I've got to go there in person. It looks like a fairy tale princess, but like there's books all over the walls and lights and it's I love it. And I was like, this is the type of space. If I'm gonna be working in this all day, I want my books everywhere and I want comfort. And I love that you brought up the adaptable couch because I'm really interested in that too because it feels like it would be like, I've seen some of the ones that they almost spread out into what looks like kind of like a a play mat where and I love sitting on the floor, so I'm thinking about doing something like that.

Annie Segarra: That would be great. Yeah. I I would say, in line with what you're saying, my desk setup whenever because usually, honestly, I'm a chronically ill person that enjoys working from bed. So, like, either it's, like, you know, one of those lap tables or what I would really like as one of those, like, twistable, almost hospital bed style desk where it's, like, l l shaped, and you can just kind of bring the table over your bed. Cool. But what I actually do right now where I'm sitting right now is this is where my bed normally is, and it's a Murphy bed. I fold it up. Fold it up.

So this what I the wall I'm touching to my right is the bottom of my bed. In the corner, I have this kind of, like, a, you know, a big what do they call it? It's not a love seat. Love seat is for 2 people, but, you know, a big chair, a big arm chair. And I bring it over to where my bed is or where it was. And right by the wall, I have one of those tables that falls into a little tiny rectangle, and I pull it out and I open up a desk, right right in the space where my bed normally is. So I'm here at my comfy, like, armchair. I have this, you know, popped up desk, right now. And it's it works because when you have a small space, when you're disabled, and and when, like, you are the kind of disabled where you're mostly working from your bed and sometimes you do need a desk, this convertible situation has been really nice where, like, I can work from bed when I need to.

And when I need a desk, I can just kind of pull it out of thin air like a Mary Poppins situation. I love that.

Erin Hawley: I love that. Like, I also have a small space to work with, and I definitely have a vibe to my room that I'm going for. But then I feel like my medical equipment sticks out so much. And, like, how you were talking about, like, making things pretty and, like, aesthetic Mhmm. Is hard when you have, like, a ventilator and a suction machine.

Erin Hawley: For sure. Why can't companies make pretty ventilators?

Annie Segarra: I know. Oh, something that I would do if I if I had a a device that I did not like is think about how I could cover it or or decorate it in ways that don't impact its function. So, like, either, if it was something as solid, maybe one of those peel and stick wallpapers or peel and stick, tile things, and then you just cut it to the shape of your device. And then if it's if it's possible without impeding on the function, spray painting it, a different color, or, like, if you're into flowers, of course, that's one of the easier ones where, like, you get some artificial flowers from the craft store and you, like, you you spiral it around the device so that it's, like, nice and floral and romantic.

Erin Hawley: That is a great idea. I, I can't do too much because I don't own it myself. Mhmm. But, I love the idea of the wallpaper.

Lily Newton: Yeah. Like a decal, I think, went really well.

Annie Segarra: Mhmm. I'm gonna sort of I've I've been so inspired recently. I don't I don't know why. I have a, a friend of mine that I also I hang out in their space a lot, and I was like, we can make your room so much more accessible for you. I want your bedroom to be accessible for you. And then I'm starting little projects now. I'm like, I want everyone to feel comfortable in their spaces and for their spaces to be accessible to them. And on, you know, on a tight budget, figure it out, and, I don't know.

That that might be a new little side project that I wanna do is, like, making examples of how folks can do that.

Lily Newton: Yeah. That's a great side project because it goes into the, like also, it it can help with, like, internalized shame and ableism in the, like if you aesthetically like it. I've been having a lot of trouble with my joints in my hands lately. It's like the first real, like, since getting diagnosed with EDS. I've I've had lots of EDS symptoms my whole life. This feels like the first thing where I'm like, oh, this is impacting my day to day, and I actually can't just push through this and ignore it. I'm in pain. And so I've started wearing, like, compression gloves while I work.

It can be helpful to not, like, hyperextend my fingers. When I'm especially, like, when I'm typing, I'm noticing I'm, like, hyperextending everything. But the gloves are ugly, so I don't wear them because I'm like, I don't want to. I put a I put together a cute outfit, and I'm like, that's such an easy fix. Now I'm thinking, like, oh, I have some friends who, like, embroider. I should, like Yeah. Embroider some cute little flowers on my compression. Something that would just, like, make me feel like, oh, I wanna put on these compression gloves. And there's 2 gloves.

Annie Segarra: The ones that you do not like that you think are ugly? Or is it the gray the gray ones?

Lily Newton: Yeah. They're just, like, gray. But there's some black ones that can look very cool.

Annie Segarra: Exactly. And that's what I think I need to do is, like, I just got the most basic one because I was, like, honestly still kind of struggling through some shame about it when I was ordering, and I was just like, whatever, the first one. And now I'm like, no. Actually pick the one that you like the least.

Lily Newton: Literally. And now I'm like, hey, Lily. Let's take some time to actually love these things. Like, yeah, it's just putting a little bit of, like, infusing some love into the things that help you. And then there's, like, a beautiful relationship there of, like, I love these. Because it's funny. I I wear knee braces all the time, and I love my knee braces because I feel like when I put them on, I look like a kind of like spy or, like, I'm like, they work with my they're black, and I wear black every day, so they match aesthetically. And it's, like, it's kinda worth it to have fun.

And I've seen people do really cool things like design, like, what you said with, like, fake flowers and putting them in there, like chairs or in walkers or, like, I think it's Lachi who has some really cool bedazzled canes that she's used. Like, just really cool. Like, just that infusing love into your aid devices is really cool.

Annie Segarra: Yeah. I think listening to you, I kind of it kind of narrows it down for me, you know, what are the benefits of putting that kind of care, you know, in into our own lives individually in that way and as part of, you know, universal design, architectural design, things like that. But individually, specifically, the benefit of putting care like that is for self expression, is for, diminishing internalized ableism because it feels all the time like disability not always, but for quite a few folks, disability is a is an aspect of themselves that feels separate of themselves. And and when you take the time and care to kind of really infuse it into your identity with, you know, decorating it in a way that feels like you, then you can have an easier time accepting, like, this is part of me. Because especially when a device does not feel like part of you, that's when it feels so separate from you and you have a harder time accepting it as part of your life and as part of your identity and as part of who you are. But if you have the opportunity to go, wow. This is as, you know, part of me as my hairstyle or anything else, then it it brings more peace and confidence to oneself to be able to do that.

Lily Newton: I totally agree. Switching gears a tiny bit and still talking about EDS, but we talked in the preproduction call a little bit just about getting die EDS diagnoses. And, you know, a lot of times we don't talk about diagnosis a ton on this podcast because it feels like that's kind of, like, the story everybody wants from a disabled person is like, how'd you how'd you find out? What was that like? But it's interesting when it comes to EDS. I've in my opinion, at least, I'm almost, like, looking to share that story a little more because it feels like EDS was such an obvious answer to many of the medical problems I'd had, but I didn't know about it until I knew about it. So I'm just curious, like, what was your kind of how did you figure out that it was EDS, and what was that, like, kind of experience like?

Annie Segarra: Well, like most EDSers, I guess, I was experiencing symptoms since I was really little, and those look like falling down a lot. Getting injured getting injured a lot. Not I personally don't know if it's everybody, or so common, but, like, if we were in a PE class, a physical education class, I would always be last in lap running, because when you have EDS, your muscles are trying so hard to keep your joints together. So it's the it's the joint difficulty while running, and a co occurring condition is POTS, the cystinomia. So, the exertion, oh, the exertion and the heat, and I'm in Florida heat too. I was I was always finishing feeling like I was dying, like, with my face as red as a tomato, and I would collapse onto the floor. Like, I would, like, fall to the floor, my back on the concrete. Like like like, I couldn't handle it anymore. And the coach being like, you're so out of shape, girl. Get it together. And the whole time, I'm chronically ill. You guys suck.

Lily Newton: Yeah. What no. That's say say it louder for the you guys suck. Like, the that caught like, the the through line, that experience we all have of being told, like, if you just work out harder and train your muscles more, And it's like, actually, no. My muscles work totally different than yours. Yeah.

Annie Segarra: All the while, we're probably the best at that little flexibility test that they gave us too. And and and that was, like, the one thing we were good at. And I don't wanna speak for every EDS or I'm gonna speak for myself. But, like, I sucked at everything else, physical fitness. And then they gave me that thing where you had to, like, reach forward and touch your toes, whatever. And it was the only thing that I could do, and I was like, and I didn't even have to try. I like it's so it's so effortless. So if that sounds like you, maybe you have EDS.

Annie Segarra: But, ultimately, like, it all caught up to me. And I've always, you know, had, like, you know, a bunch of random physical weaknesses and illnesses, bad immune system, getting sick a lot, missing school. I would have horrible random asthma attacks. I don't have asthma, chronically every day where I need to use an inhaler, but, randomly, I will just have some lung weakness and experience asthma for maybe a week or something, especially in temperature change, if, like, my lungs get too cold or whatever randomly. It's it's weird. But, yeah, I have to have inhalers handy handy for that reason. And when I was in my early twenties, I was working a job where I had to stand up sometimes for, like, a 12 hour shift with the lunch in between, and it was in high heels and things. And I, like, I had been told my entire life thought, oh, I'm just out of shape.

I'm just, weaker behind everyone else. I must be in so much pain because I haven't learned how to wear heels yet. Everybody else figured it out before I did, and I'm just behind. Like, I would keep convincing myself that, like, my I was, what is the word here? Sorry for this brain fog today.

Lily Newton: Brain fog is more than welcome on this podcast.

Annie Segarra: I I was I was inadequate. That's the word I'm looking for. I was I was, like, inadequate at things because I didn't work hard enough to be adequate. Like, it it wasn't it wasn't a disability. It didn't even occur to me. It was just, like, it was something that I I was, like, too lazy or, like, I hadn't worked out enough, whatever, which is the, you know, the voices of people my entire life telling me

Lily Newton: Right.

Annie Segarra: That same thing throughout my whole life. But, eventually, the pain that I was experiencing became so much that I couldn't stand up for more than 5 minutes before the pain level got too high. And then I finally sought medical help. I said, maybe I have a fracture in my heel or something that was, like, the that was that was a comparable pain. I was like, maybe maybe it's a heel fracture. And I finally sought medical help and they, I guess, examined me and said, you know what? You're fine. Just go home, put your feet up, and, like, you'll be fine by next week. And that was just the start because, like, I don't know.

Annie Segarra: I feel bad for anyone who would seek a medical professional and get told that and then just be gaslit into believing that anything that happens from there on is in their head because the doctor said so. Anyone who, like, kind of very, is willing to believe a medical professional because that's that's also something that we are told a lot throughout life is, like, the medical professional knows better than you, and whatever they say goes, da da da. And and I also I also don't like I don't like having to combat that as I speak right now because I know that there is a whole another face to that sentiment of, like, don't listen to doctors, and that's, like, you know, the face of, like, anti vaxxers and and things like that. So, like, it's such a fine line of, like, there is science that we should be listening to, but individual doctors can have a tremendous bias when it's when it's 1 on 1. So, like, both can happen at the same time. I I don't wanna negate that, like, science and health care is important and that we should be listening to experts on those things. However, when it's just you and a doctor in a room, there can be biases against you as, someone who appears like a woman to them and and, someone who is a person of color or trans or whatever else. Like, there are all these biases, and so many individual doctors are rushed for time.

And, like, they if it's not an obvious thing, then they are very they are often very dismissive of it. So I just wanna be clear on that. I, ended up going in and out of doctors for, like, 3 years, different specialists, who, because the answer wasn't obvious, ended up being pretty cruel on different situations. I remember, because this is the first time in my life trying to go through a, diagnosis search and seeing different specialists, and I didn't know this. I'm sure most people who've never attempted to do this don't know that in order to try to do this, the first specialist I tried to see was, I believe, a radiologist. Not a radiologist. An an an neuro a neurologist. Sorry.

A neurologist. And I was stunned when I learned that I had to wait 3 months to see them. I I I thought, you know, there's something wrong with me. By the end of the week, I will know what is wrong, and I will get medication. I'll I'll figure it out. This will all be over. Like, that that was my process going to the doctor for the first time. I was like, this is a this is a healed fracture.

They're gonna diagnose me. They're gonna cast me. They're gonna figure this out, and I'll be back on my feet, and and and it'll all go back to normal. But then they tell me, no. You wanna see a specialist? You have to wait 3 months. So I'm waiting 3 months in pain, not knowing what to do, not knowing how to get around. I finally and and all my, you know, hopes, I I naively think, you know, okay. I'm gonna see this specialist.

I'm gonna wait 3 months. I'm gonna see a specialist. They're gonna tell me what's wrong. We're gonna find the solution. I'm gonna be on my way. And those 1st 3 months, it it felt so long. I was like, this is so painful. I just want this to be over with.

I wanna stop being in pain like this. And I get into his office, and I explain everything that's happened. And his answer to hearing all of that was, okay. What do you want me to do about it? Wow. Ew. And I'm quoting verbatim. Okay. What do you want me to do about it? And I started crying.

I was like, What do you mean? What are you talking about? You're supposed to know. I don't know anything. That's why I came here. I don't know anything. You're supposed to know things. And he's like, shrug, I don't know. Your fear? What am I supposed to do? And, I couldn't believe it. But, like, that sucked, and it just I just kept going on and on to, like, different specialists and trying to find anything.

In the 3rd year, I finally saw a neurosurgeon specifically, and he told me based on, like, my gait that, like, he thought the problem the reason I experienced pain in my feet is because of an issue in my hips, a SI joint disease. And I was like, oh, finally, somebody said something.

Erin Hawley: Mhmm.

Annie Segarra: My my SI joint is messed up, which wasn't wrong. He was right. My SI joint is messed up. And so I do experience a lot of hip pain, lower back pain, and that unevenness messes with my legs and my feet as well. So it wasn't wrong, but it wasn't the whole picture. And so he said that he wanted to give me a steroid in my lower back for the lower back pain. Because at that point, 3 years in, I'm like, you know what? White flag. I'm just gonna use a wheelchair to get around because there's no other way for me to get around.

I can't walk for more than 5 minutes at a time. Like, I'm gonna use a wheelchair, and I'm gonna try to find a different job because my job required me to stand. I'm gonna try to find something else, but if I'm gonna be sitting, I need to find a solution for this back pain as well. So he gave me a steroid and what I didn't know at the time is with Ehlers Danlos syndrome, there is particular kinds of steroids that will break up your collagen. And when you have EDS, your collagen is already fragile. The way I like to give people a visual is, like, you know, those Halloween cobwebs, the cotton that you stretch out. So, like, most people's connective tissue is the cobwebs when it looks like a ball of cotton. And people with EDS, they their collagen, their connective tissue is what that cotton looks like when it's stretched out, so it's very, like, thin and fragile.

So when you put steroids onto that fragile connective tissue, it's like grabbing a scissors and going snip, snip, snip, snip onto the onto the weak connective tissue. And so when I was given the steroid, all of a sudden, I had zero strength in my lower back, 0, like, connective tissue, and I was stuck horizontal for 10 days because I couldn't lift myself up. I had no I have no ability to, like, sit up. And that was really scary, but it passed. And I let I let the doctor know. I said, hey. So after I got that injection, I was stuck horizontal for about 10 days. And he said, that's not possible, and, like, dismissed it.

And I'm like, what do you what do you mean? I'm, yeah, I make I'm making that up. What do you mean? And the thing is this is 3 years 3 years in now, and I'm feeling so this has started to really bottle up in me that I'm being gaslit over and over, made fun of over and over, all the while I'm experiencing so much pain, and I'm losing my life. I the life that I was living is gone. I had lost friends. I had lost time. I was stuck in bed and, like, lost and confused and just in a limbo of, like, staring at my ceiling all day, like, unable to do anything, just experience pain. And he looked at my scan of my SI joint, which is, like, you know, your pelvic area, your hip, and and he saw that, and he saw that my joints were really far apart. They should be kind of, like, close together, but but there was a separation. And he was aghast at it. He said, what is this? He goes, this looks really traumatic, like if you were in a car accident or something. And I said, no. But what we're looking at up there is more evidence. At that point, I had I had found EDS on my own. I said, I need to find somebody who can diagnose me. And that was that was, thankfully to, you know, chronically ill community online and Yeah.

People people suggesting it to me over time. And so I was collecting symptoms and data, like, I'm pretty sure this is what this is. So I pointed out to him. I said, hey. This is what I've been telling you it might be. It falls in line with what I've been collecting data on, so I think I think I might have it and I need to get tested for it. And his answer to that was, no. You don't have that.

So and he just continues going on to other things. Just it was a complete no. And he said, so here's what I wanna do. I wanna schedule you for an operation to fuse your joints together, to fuse these, SI joints together. And I started crying in his office because what I just told him is that my body is not responding in typical ways to typical treatments. And by this time, 3 years in, I'd also already had another operation where other another EDS fun fact, our bodies don't respond to anesthesia very well a lot of the time. So, anesthesia and painkillers, did they they don't work very well. That's why I don't take any, and, and I try.

I I've tried so many things, but I had an operation on my foot, and they in order to try to stop the pain or help the pain, and I woke up and I felt every incision. I could feel, like, everything. There was no numbness, nothing, and I was, like, screaming until I passed out, basically, just in, like, shock of the pain. And they tried to give me painkillers, and painkillers wouldn't work. And so I just felt everything raw, like, for a certain amount of the recovery time. So when he said we're gonna we're gonna put you under the knife again, and we're gonna try fusing joints together, I just burst into tears with, like, every everything that had bottled up in my body. I'm, like, all this medical trauma, like, you put me through this operation already. And that's that's scary enough on its own that, like, anesthesia didn't work and and how much pain I had to go through afterward.

And all the gaslighting and the and the dismissal and the cruelty. And I don't remember exactly what I said, but remember, like, I attempting to advocate for myself through tears. Like, you're not listening. Everything I remember saying, you're not listening. Like, I slammed my hands on his desk. Like, I had I had artistically lost it in his office, with, like, high emotions, and just kind of having a meltdown, I guess. And, in a very I can't I can't believe how how things worked out, but a a woman doctor walked into the office and and and handed him something and then looked over at me and said, why why is she crying? Like, if this lady had minded her business, I wouldn't I wouldn't be here in this way right now. So she says, why is she crying? And he says, like, while rolling his eyes, she thinks she has Ehlers Danlos syndrome.

Like, I'm a freaking dummy or whatever. And and and, excuse the ableist language, of course. But, then then, she's she looks at me so kindly, and she says, I've never heard of that before. Can you spell that for me? And I'm still blubbering, so I'm like, e h. And and she's like, don't worry, sweetie. I got it. And she, like, googles it really quick, and then she looks up at my scan that shows my joints all separated. And she says to him, she could have this.

And I don't I'm not sure who she was or, like, what the situation was between the 2 of them, but he, again, rolls his eyes and he says, fine. I'll send her to a geneticist. And I was like, Jesus. So this is, like, probably the 9th specialist that I will see in 3 years, and I'm there with my little binder of collected symptoms and data and, like, all the things that I've been gathering over time. And I'm prepared to the momentum is so, like, I'm prepared to push up against the wall again. And so I well, I could maintain that visual in mind, and I'm prepared to, like, advocate for myself in that way. And I just kind of do the same same spiel that I've been giving everybody else. Like, it started like this, and I've been dealing with this, and then I found this, and I've been documenting all my symptoms and and prepared to, like, have to advocate for myself. And the first thing she says after my spiel is, yeah. Sounds like a good habit.

And I was like, like, what are, like, all of a sudden, you know, the the wall gave way. And like, I was like, oh, I don't have to I don't have to push. I don't have to fight. And then but the thing is, and this is where, like, love comes in. She, for whatever reason, didn't feel equipped to diagnose me clinically. And and again, because so many doctors don't know enough about it. Right. Doctors who do know about it, they can clinically diagnose you right there in office.

They just, like, check check a few boxes and they're, like, yeah, you because the most common type for the hypermobile type doesn't have a genetic marker yet. Right. So that's how they have to diagnose it. But doctors that have not seen it too often, they still don't feel equipped to clinically diagnose it in that way. So even though she believed me, she still couldn't let me walk out of the office with a diagnosis. So it's just like, what I have to do, because I am who I am, is give you a blood test. And so for me, fortunately slash unfortunately, I have a rarer type of EDS, right, than the than the most common type, and that is classical EDS or CEDS, and that did come out in the blood test. So with that and you know what? At the end of the day, with all the gaslighting and the dismissal that I went through, like, I was glad that I had the agenetic marker and, like, a very tangible, like, unarguable way to say I have EDS.

It's literally in my genetic markers. It is in my blood test, and so nobody can argue with me ever again, about whether or not I have it. So it's, you know, it's difficult in that when you have a rare one, there is even less research about it. So there's, you your whole life is a medical experiment and and and trial and error, but at least psychologically, I have the comfort of, like, you know, at least we know for sure what this is via genetic marker, and so I'm I'm grateful for that.

Lily Newton: Shout out to that doctor who walked in. It really is those people that, like, change your life that, like and and are just willing to be like, yeah. Maybe. Like, it's so important, actually. And I what should have been when I figured out I had EDS growing up, I went through, like, 2 years straight of medical appointments because I was having, like, debilitating pain in my, like, stomach area. And I was, like, I'd be standing up and then suddenly I'd fall to the ground because I'd have such an intense pain. And, of course, you know, doctors were are trained to, like, whatever the most obvious answer is. So I'm getting, like, colonoscopies and all of these invasive things to try to figure out what's going wrong in there.

And then I happen to have a gynecology appointment just like the routine ones, and I just was kind of lamenting to that gynecologist who was a woman doctor just being like, yeah, it's it's just tough. Like, I I've had a lot of appointments and haven't been able to figure anything out. And she was like, hey, one second. And she was like, can you do a sit up for me? And I was like, I'm not gonna be able to. And she was like, just try so I can feel what your muscles do here. She pushed on it, and she was like, yeah. Your abdominal wall is torn apart, and I can feel it very easily. And and I was like and she figured it out so quickly just because she listened to me for a second.

And then it was like, oh, so all these things I'm doing, the, like, extra working out, the trying to gain muscle or making it worse, I need to rest and let this heal. And it's like, it's such a common thing, and I'm so sorry that you went through all of that gaslighting. It's such a common experience and shouldn't be. But that you know, just major shout outs to those doctors that spend often female women doctors, would love to have more male doctors join the join the charge of being advocates. I will say the doctor who did diagnose me with EDS, he was a guy, and he was very well versed in EDS, though. And I went in I went into that appointment, though, knowing, like, man, doctor, I'm gonna be gaslit. I was, like, I was, like, gearing up for a battle that day. I had, like, I had, like, written out my things I was gonna say to prove things.

And I walk into the appointment and he goes, so you think you have hypermobile EDS? Show me your party tricks. And I literally which could be seen as kind of whatever, but I was like, okay. And I did because my elbows flipped completely inside out and my knee and like 30 seconds into the appointment, he was like, yeah. I have no doubt that you have hypermobile EDS.

Every time I tell this every time I tell the story, I'm like, I have a different feeling about it because I'm like, on one hand, it was so amazing that it was, like, lighthearted and obvious because it should have been lighthearted and obvious my whole like, we at some point, someone should have seen that my elbows popped completely out and been like, I think that's hypermobility. So there's something really beautiful about how quickly it happened, but then afterward, I'm like Yeah. I can't believe I'm accepting being asked, like, kind of an offensive question because it wasn't a battle.

Annie Segarra: For sure. Because be well, the thing is it I've had oh, yeah. I've had, like, medical students talk to me or ask me questions about EDS afterwards. And I've had really horrible experiences where with that kind of line of question and, like, show me your party tricks. My hope is that the doctor that you experienced, like, would have accepted, like, actually, no. I don't wanna show you that. There it's it's uncomfortable. And for and and, like, the way that this scenario would have been okay is, like, a secondary, like, actually, I don't feel comfortable showing you that.

And he can give, like, a soft, like I I was just kidding. I'm sorry. You can go ahead and tell me, what it what it what it Your your daily pain. Yeah. Yeah. Yeah. Yeah. Yeah.

Versus, like especially HEDS. Like, I know that HEDSers tend to have, like, more party shirts than I would too. My mine ended up hurting the crap out of me. And, but, yeah, I've had student doctors try to learn about EDS through me, but, I I remember one of them specifically. God. I need to, like, rehash these stories back up because I'll you know, if you don't do that for yourself, you will forget them over time. But, but a guy student doctor asked me about EDS, and I said, yeah. There's, like, there are he asked about party tricks specifically, and I said, yeah.

I can do some of those things, but but at this point in my life, the connective tissue is too weak. So, like, if I attempt to do them, I could seriously dislocate the joint. And, and I held up my hand like this to be, like, see, like, this, And I pointed out the connective tissue. My thumb is, like, too weak now. If I try to, like, bend it back the the other way, I could I could dislocate it. And this guy and he's not the only one. Other people have other people other doctors have done this as well, have grabbed my hand by force and tried to, like, force my thumb back backwards after I just said, like, if you do that, you might dislocate it. Like, why are you forcefully grabbing my hand and attempting to what's wrong with you? Like, I'm a human being.

Like, 1, without consent. 2, to harm me to see if I to see if I'm right about what is going to cause me harm? Allah, like, a situation where someone says, I'm allergic to this food. If I eat this food, I will have a a an attack. And they go, no. Prove it. Like Literally. That that that that was the the situation. And I'm just like, I cannot stand like, the medical trauma is so extraordinary where it is so hard to trust medical professionals because they have completely objectified our bodies, and they've completely, like, shown their asses in regards to, like, bias and prejudice.

And, this brings to mind on, once upon a Twitter, there was a hashtag. It was, gosh. Doctors are doctors are dickheads, specifically, to to talk about how doctors have, you know Gaslit on us? Yeah. Gaslit and mistreated patients, misdiagnosed patients, and and all the, bad behaviors that, patients have experienced from doctors. And it's it's definitely something to be worried about and to point the finger at because there's such a horrendous power dynamic between doctors and patients. Like, they hold all the power. They hold they hold where our names go on lists on whether or not we can receive the treatment we need or the medication that we need, and it's awful that, like, somebody could be seriously sick or seriously in tremendous amounts of chronic pain, and a doctor can put their name on a list and be like, don't listen to this person. They are a hypochondriac.

Annie Segarra: I'm like and then that's and that's it for you. You you will never get access to the care that you need because they put a label on your head. And but that turned really ugly on Twitter because of for this is what I don't understand. For whatever reason, I don't know if it's a privilege thing. I don't know exactly why, but people in a certain field cannot admit that there is a problem in their field and have to take it personally. And not just take it personally, but have this really emotionally immature response of, like, well, fine. Come into my office and see how I treat you. And, like, we're like, that's the point we are trying to make.

Erin Hawley: Right.

Annie Segarra: That you do not have the emotional maturity to hold the position that you hold because you cannot even listen to a conversation on the Internet. You cannot even observe a dialogue that is happening about patients that have experienced medical neglect and medical trauma without making it about you Right. As an individual and without saying that you're going to take revenge on those patients. You are what we are talking about. And Yeah. And the good doctors out there the the good doctors out there are and I I know this from, like, firsthand experience in that while I was going through all of my figuring out that I was autistic, EDS, all of this, My sister was in medical school and becoming a doctor. And, it's it's been really interesting having open dialogue with her, because she has just been very, very open to when I bring up these kind of issues and talk to her about it. She's like, well, yeah, that makes sense. The word disability wasn't in my medical school training very much. And even though it's like, that's crazy, which excuse the ableist language. That that doesn't make sense. And, but she's been really open to it and thus has become, like, in her area, kind of known as, like like, she's got, of course, unfortunately, long waiting lists because she's a safe person for chronically ill and neurodivergent people to go to. And it's like, I I see how now she's got these waiting lists and everyone wants to see her.

Lily Newton: And I remember when she was in medical school, the process of the American Medical School System weeds out those who do not have that privilege. And, like, there was so many times where she was staying up for 48 hours straight on her feet because she was doing rounds and doing these things and talking to me about, like, I can't have mental health issues right now. I can't have body issues right now. Like, I can't have these things going on because I have to focus and work because I've been working at this degree for so long. And it's like it almost to me sounded like these people being trained in medicine were being taught to, like, shove their pain down and not not take care of it, not accommodate themselves in a way that I this is all hypothesis from myself, but that, like, I think that there are a lot of doctors who get very triggered by seeing people advocate from themselves for themselves because of the way that we have asked doctors to never do that for themselves. And it's like we need which is why I'm such a big advocate for, like we need more disabled doctors. We need people with disabilities going to meds. We need medical schools that are accommodating and accessible. Like, it it that's the way you change the medical field and open conversations like this.

Annie Segarra: Convince me to go to medical school right now.

Lily Newton: And I will convince you to go to medical school right now.

Annie Segarra: I like because I, it it personal fact in my life, like, there's so many so many fields I would love to go into. And, like, I wish I could split my body up into, like, 15 different people so that I could, like, do all these things.

Lily Newton: I'm sorry. I relate.

Annie Segarra: I I do, you know, you know, with, the administration that we're about to walk into, I really wish that I could just, like, you know, upload all the medical information I need into my brain for when I need it, because I feel like it's what we're about to experience next is more terrifying than, like, anything else so far, especially with the threats to, like, Medicare and Medicaid Right. And things like that. Like, I I, as a disabled person, I'm trying to, like, strategize exactly what I have to do or what I should be doing in regards to medication and treatment, before the the literal threats of, like, that being taken away. Right. And something that, speaking of which, I I'd like to, like, highlight because and not just not just in regards to the administration, but in regards to, like, climate change and things. A conversation that happens a lot in, like, you know, I don't know if you feel the same, but, like, within my social circles is, like, what do disabled people do at the end of the world? Right? And, like, it's funny because I've I've had an answer to that for a while, and I didn't realize that it was such a common answer. And I'm like, well, if every if everything collapses, I guess I'll just lay down and die. Like like, that was, that was my answer.

And I realized as I started having these conversations with folks that it was a lot of people's answer. I'm, recently dating someone new this year, and we're actually about to be a year together in January. And this person has introduced me to a lot of really cool things, and one of them is that prior to ever meeting me and and she has not identified as disabled herself, that, podcasts that she listened to that really stuck out to her was that conversation around, what disabled people can do, quote, at the end of the world. Right? And that while so many of us have, very much, like, doomed ourselves in our brains, I thought it was really neat that there was, like, this optimistic view of, like, what we are capable of with community and with, being able to, exchange resources with one another and that, like, so many things, like the medications that we need and stuff like that. Like, as long as we have, like, allies in certain areas, like, it's not we we do not have to, like, resign ourselves to, like, it's just not doable. It's just not possible. And it was the first time that I'd ever heard about that or thought about that, that, like, we we don't have to we don't have to do that. We we can, through community, find the resources that we need, and it's still possible.

We we have not seen what it looks like to need this kind of a system, to need, community and, like, DIY medicine and DIY health care in that way. But in case anybody wants to have a little hope in their body, like, it really made me feel better to to hear about that and know about that, that there are people who are trying to figure out what it looks like and what it means to have this underground, disability, mutual aid, mutual care kind of a system instead of just resigning ourselves that, like, it's not possible at all. So I'd rather I once that was introduced to me, I was like, yeah. I'd rather think about it that way and and try to organize and and figure out how we can do something as opposed to just resigning myself to that it's not possible.

Erin Hawley: Yeah. Like, disabled people have always had to have each other's backs. Mhmm. And I think that is not going to change. And the Internet, especially, is helpful for connecting each other. That's how I'm kind of thinking about that as well.

Lily Newton: Yeah. That, like I mean, community. And, you know, I'm I'm the first to admit, I am a, like, disgustingly optimistic person. Like, it's it's maybe part of my autistic naivete. I'll I'll admit it, but I I am my friends I'm known as, like, the the just go to her for positivity. And it's funny because when you first pose that question, they're like, what do we do with the end of the world? My brain's immediate thought is just like, will we find each other? Like and that that I love that that I'm grateful that that's my brain's thought there and that I have seen in action that, like, having friends who, just recently actually, like, went through something where a friend's insurance didn't work, to get their medication refilled, and it happened to be a medication that I had been on that didn't work for me that I had extra of. And, like, even saying this on a mic at my work podcast, I'm like, oh, it's kinda nerve like, you're not, like, supposed to share meds and stuff, but it was like, I'm not gonna let my I'm not gonna let someone I love suffer when I can help. And I think that is the Things like that, like stockpiling the medications that we need or that other people might need.

And and knowing you can reach out. Too. Knowing you can reach out, I think, is really important. Like, I was so grateful to my friend who texted me and was I think I remember that you had tried this medication. Like, because it was like, yes. It we have to be willing to say, I need help with this. And that is a suit that is something that I think the dis disabled community were better at than most is that, like, fuck my ego. Like, I need help, and I, like, I'm I in the worst times of the world, I know that there have always been groups of disabled people helping each other and creating joyous moments.

And so I I hold on to that, and I'm I'm so grateful for you coming on the show, being so open, sharing so much of your story with us. And I love that. I think that just like the EDS diagnosis, what you went through story is one that we have to keep having because some doctor's gonna hear this, and and that's important. Or, I know my my sister's gonna share this with people because that's what she does. Like and, these conversations where we're open are really important because we can't just give up on whether it's the medical field or staying alive in terms of an apocalypse. We have to try to make it better in some way, and I think, the work you're doing, Annie, is definitely doing that, finding hope and just showing the raw truths of of this. So I I'm really grateful for you. Really grateful for your content.

Listeners, give her a follow. It's it's like, just I love Annie's page. And, I'm so grateful you came on this show, and we're so vulnerable. I can't explain quite how healing it is to be a brown queer woman who is has been somatically gaslit and has, like, in the last few years discovered my autistic and EDS identity to get to talk to you and know, like, my I'm not alone in this until, you know, that sharing that story of, like, well, your abdominal wall is ripped open. Like, that is a traumatic story, but to get to share it with someone where we're laughing because we understand it. I think Erin and I have had so many moments of that where it's like, yeah, this is we're talking about ableism right now. It's not fun, but we can laugh about it. So we're changing.

Like, it's almost rewiring the pain in my brain. So I'm so grateful that you came on this show and, Erin, any anything anything else before we sign off? Erin Hawley: No. Just thank you for coming in. I know I got followed you for a really long time, and so I'm just so excited that you were able to come on and chat. Or something.

Lily Newton: Annie's been putting in work on the Internet for a long time. We didn't get to this in this episode, but listeners, Annie is the person that created the, like, stop hating your body Tumblr, which also was very Annie, very Annie, you've been low key healing me for a long time and didn't realize it. So I'm very grateful. And yeah. So if listeners go down that rabbit hole, find find everything Annie's done on the Internet. It's all awesome. And we'll see you next time for another episode of everything you know about disability is wrong.

Erin Hawley: If you like what you heard, go ahead and subscribe and leave us a review wherever you get your podcasts.

Lily Newton: Thank you to our listeners. And as always, thank you to Easterseals for giving us the space and resources to share such authentic conversations from within the disability community to our listeners.

Erin Hawley: And I'll see you next time for another episode of everything you know about disability is wrong.