Annie Segarra is an intersectional activist and content creator with Ehlers Danlos Syndrome (EDS), a connective tissue disorder. We talked via email about her journey to diagnosis, becoming disabled later in life, and navigating YouTube’s content creation minefield.
Adolescent Content: You’ve taught me so much about chronic illness—specifically about finding a doctor that believes you. Was there ever a moment when you were considering giving up on finding an answer?
Annie Segarra: I think I was very close to quitting everything. I definitely thought about it. I can only compare it to the imaginary scenario of perhaps having a visible open wound and bleeding out, and every doctor you plead with for help cooly saying, “There is nothing wrong with you” while smiling as though giving you good news. It feels like The Twilight Zone! And it's not just disbelief, it's full-on gaslighting… For me, there was a sort of economic deadline—every doctor's appointment, every unnecessary test, even the driving distance to the hospital cost money. My health insurance, in an almost cosmic way, lasted me until the month after I finally got my diagnosis.
I spent three years actively being misdiagnosed and pushing for what I felt was right, eventually figuring out what I had on my own before doctors would even indulge [in the possibility]. When I suggested several times to several doctors that I thought I had Ehlers-Danlos Syndrome the responses varied from dismissal to laughter and repeated rejection. Through a series of events, [however], I eventually got to a geneticist who tested my blood [and diagnosed me with] classical Ehlers-Danlos Syndrome.
It’s frightening to consider the same obstacles with someone with different experiences—someone who might’ve just accepted and trusted a doctor saying [there’s nothing wrong with them] at their word...someone who got knocked down by rejection and emotionally or logistically couldn’t come back for a second opinion.
Adolescent: I’ve been following your YouTube journey for a bit and I know you became disabled recently. I always tell folks that being disabled is the one marginalized identity anyone can gain anytime and anywhere. In movies, that’s usually a super tragic thing with this giant mourning process. Was that the case for you?
Annie: My condition is degenerative, so my mourning process is kind of this tedious cycle of fear, mourning, acceptance, and repeat, and it sneaks up on me… And sometimes it’s a temporary symptom and turns out I didn’t have to mourn it. Does that sound confusing? It might be because it is.
I’ve had chronic pain all my life. My back pain was bad enough at 13 that I would try to realign my back by slamming it [onto] the floor. When I started experiencing high levels of pain in my feet in my early to mid-twenties, I figured it was a part of the human experience [to need] to dip one’s feet in hot water after a day at work. But...I soon had difficulty standing for even a few minutes and got myself a cane to help me get around. I finally decided to see a doctor thinking I might have fractures in my heels.
In seeking diagnosis and treatment for the pain in my feet, I didn’t really consider that it might be permanent—I just thought that I would visit the doctor one time, get a diagnosis, get treatment, and get back to my old life. That idea of getting back to how things were saw me through a misdiagnosis and subsequent surgery, and when the surgery didn’t work, I realized, “Oh, I guess I can’t walk…indefinitely.”
It happened so slowly and there were no real answers as to what was going on, so I didn’t really feel any stable ground to mourn on, and that’s kind of how it feels with every incoming disability. I never know how permanent something is, so I almost don’t feel the right to mourn it, even when they are very scary losses at the time.
There are times when I cannot bend down to feed [my] dog, times when I cannot cut my own food, days at a time when my leg pain is so high it’s hard to stand up even for a second, days at a time [when] I sleep for 18 hours and it’s beyond my control. It’s scary and frustrating for me not to feel that control, [and that], for the most part, outweighs any feelings of sadness. My response to new disabilities is now, “Okay, this is happening now, let’s figure out how I adapt to it, what my new accessibility needs are.” I don’t feel like there is real cause or time to be sad about it, [and so] I just keep moving forward.
Adolescent: Did you ever have a moment of culture shock when you realized you had to pay attention to all these specific things in terms of disability? I feel like no one pays attention until they’re in it.
Annie: For me, it was definitely realizing how many of my favorite places were inaccessible to me as a wheelchair-user. I started using a wheelchair for long distances like shopping trips for a while, then had to use a wheelchair full-time for almost a year after my surgery, and now, although it’s still very painful, I try to get around the house without aid...but for anything beyond a few feet or so, I need my wheelchair.
My illness keeps me home a lot, and when I’ve tried to go out to the places [where] my friends hang out, I find obstacles like staircases and gravel. It’s such an unwelcoming feeling—it’s a reminder of being a second-class citizen. We have laws about making public spaces accessible, and people just do not care. They’d rather pay lawsuit fees than make the changes that are legal and more inclusive.
Of course, I’m ashamed of the ignorance and lack of attention to things like that [I had] until becoming disabled myself, but here I am and I won’t shut up about it. The injustice hit me right in my chest, [and] accessibility then became incredibly important to me. I [now] implement it wherever I can and hope to inspire others to do the same whether they are disabled or not.
Adolescent: You’ve started a t-shirt campaign which promotes conversation about disability inclusivity and preventing accessibility laws from being destroyed. Do you think we’ll ever reach a place where the fight for disabled people is won?
Annie: I don't know if that will happen in my lifetime or not, [considering] we have a very long way to go. Even our abled allies can be an obstacle because no matter how well-intentioned they may be, their power, lack of understanding, and ignorance can make [for] a harder climb. I don't say that to discourage allyship, obviously, but to try and communicate the need for consideration, awareness, and pointing the mic at disabled activists.
Adolescent: Do you worry about how people see your narrative?
Annie: I feel like people may sometimes have trouble digesting my narrative because they are so used to ableist ideas of what disability is. Some people certainly do not want to learn, [because] they benefit from ableism existing—it helps them feel superior and keeps them in power. Do I worry about it? Not really, there is nothing I can do about them.
I can, however, try and be as inviting as I see fit… Sometimes my messaging can be emotional or angry, but for the most part I do try my best to use caution and patience when creating content. But it’s not something I stress too much about… Different people will be reached with different tactics and diverse paths that will hopefully lead us all to the same destination: equality and equity for disabled people.