EDS and Imposter Syndrome
Does anyone else with EDS (diagnosed or not) deal with that constant feeling of "this can't *really* be real"? Like, I'm currently undiagnosed, going through the very lengthy process of ruling out what feels like everything else in the book while my care team is certain EDS is the only thing it could possibly be, and I just feel so incredibly lost in all of this. I feel like I shouldn't even refer to myself as having EDS or even *possibly* having EDS, because what if I'm wrong? What if my entire care team, as wonderful and attentive as they all are, are wrong? I feel like I'm constantly stuck in this loop of "what if?" that will never end, and if it turns out its not EDS, it would mean I'm a fraud (intentional or not).
In the past 5 years I went from being pretty high-functioning and able-bodied (with pain that I could tune out, at least), to wheelchair-bound and unable to walk or stand even with a cane for more than a minute tops. My entire life has shifted on its axis, I had to move back in with my mom at nearly 30 years old, and I can't do any of the work I have experience in (heavy labor jobs mostly) so I also make no money and am completely reliant on her as both my careworker and for anything money-related. I don't know what I expected from life, but it certainly wasn't this.
To kinda top it all off, I tend to see or hear about other people with EDS who still can do some or most of the things I can't anymore, and it really sucks, because I *wish* I could still go hiking, or walk on a beach, or even just go to a restaurant without having to check if they have handicap accessibility. I've been in a chair for a few years now, though only in the past 2 has it been full-time, and it still feels *off* to me sometimes. It feels like there's something wrong with me for needing it, not that I need it because there's something wrong with my body, if that makes any sense.
Maybe that's just some leftover internalized ableism from working in so many heavy labor jobs for so long, or maybe its due to a lot of doctors dismissing it in the past, but either way its really hard to get that feeling out of my head. I don't just not work because I don't want to, I miss working more than most of the stuff I did in my downtime. I *can't* work, even from home. I can't focus on almost anything through the constant pain, and regular spikes that make it impossible to think of anything else.
It feels like everyone just wants to "fix" me, but that's not even an option here. As much as I know mom means well, and just doesn't want to see me in pain and losing more and more functionality as time goes on, this isn't getting any better. We don't even know for absolute certain what this *is* yet, and I feel even worse because of that because if its not EDS, then we have to start all over because we're eliminating all kinds of other things along the way, which means they would have missed something somewhere. Even if I could physically get back to where I was before the wheelchair became necessary, I don't think I'd ever mentally recover from how my entire life has shifted to accommodate the rapid loss of function, not to mention the mental effects of being in pain like this for prolonged periods of time.
I don't really know where I was going with all this, or if there even was an intended destination here. I guess any potential point I could've been trying to make or end goal I could've had in sight was lost along the way, and it just turned into venting some of the frustration I have with how if feels like my whole life got turned upside down. I don't know what to do anymore, I don't know what to say anymore, and I have absolutely no idea how to still be me with all the ways things have changed over the past 5 years. Sorry for the essay, hope anyone who reads this and has had the same (or similar) experiences might be able to at least feel a little less alone #EhlersDanlosSyndrome #EDS #ImposterSyndrome
