u/hopefulblazeexpert

I’m not convinced dysphoria is the accurate description of this feeling, but it’s how I described it to my peer support worker so I’m going with that.

27F. In January of next year, it’ll have been 14 years since I had my fusion surgery. At that point, I’ll have lived with this fusion for half my life (had my surgery at 14). Despite all that time, I’m still emotionally not really at the acceptance stage of all of this (even if I accepted it intellectually years ago), and find it really hard to connect with other people who have scoliosis. I can’t stop myself from comparing curvatures and being either bitter if their curvature isn’t as severe as mine (which unfortunately includes my younger brother) or feeling horrifically guilty about my own issues if their curvature is worse than mine. Coming into communities like this, support groups, or even just reading posts in the scoliosis tag on tumblr all end up feeling more like I’m putting myself through some form of psychological self-harm rather than joining a group of people who can understand what I’ve been through who can support me and who I can support in turn.

I don’t like living like this. I’m going to have this fusion and all the metal accoutrements it came with for the rest of my life, and the idea of spending the next 60+ years being so isolated and miserable about it makes me want to cry. But at the same time, I’m not sure what to do. I don’t really feel much connection to my body, it’s kinda just where I have to live in my mind (though it is no longer something I call “flesh prison”, which is an improvement! I use “Eva-Unit 98” to refer to my body now). This condition could have killed me, and actually came pretty close (my lung capacity was just above 30% at its lowest, and I was told that if my curvature continued to progress as it was, my ribcage would likely crush my lungs and kill me by age 25. This is also the biggest reason for the disconnect between “myself” and “my body”: “my body” tried to kill “me”, so even getting to a more neutral state from active hatred took a long time and a lot of effort). There is still a decent amount of curvature even post surgery, because I was at risk for paralysis if the surgeon moved it any more than he did. The support group I briefly attended was filled with people much older than me who had very different experiences to mine, several of whom even resented having had their surgeries, and had the metal removed later in life. While it was an interesting experience, talking with them didn’t give me confidence that I’d get to that emotional acceptance about my fusion they said would come with time.

Even when considering something like media representation, since being seen can help people feel more normal, I can’t imagine any sort of representation of scoliosis in something I’d actually read or watch; all my brain can conjure is children’s or middle grade books explicitly about explaining scoliosis, or something that practically shoehorns it in for anything aimed at adults. Having scoliosis affects my day to day life as an adult, in multiple ways, I should know better than to think it would be something that could only be shoehorned into media I could reasonably be the target audience for. Hell, if my biggest hang up about it was that I didn’t think that the writers would do a good job of accurately representing the day to day life of an adult with a fusion, I could write something myself! But I don’t even want that somehow. It’s like it has to be the focal point of the character or story in my brain, despite the fact that myself, the rest of y’all, and many, MANY others live full and complete lives where the scoliosis is most likely not even in the top 50 most interesting things about our lives. The closest I’ve found to representation as an adult that I actually like is a plush toy, a rabbit by a company called plushie dreadfuls that is specifically designed to represent scoliosis (I have one, his name is Oliver and I love him). And while expensive plushies can be argued as something of an adult market, it’s still a plushie, which are seen as childish broadly speaking, and the focal point of the plushie is still the scoliosis.

Scoliosis is a disability, I know this. I’m going to live with it for the rest of my life no matter how much that thought, frankly, horrifies me. It’s not something one gets over emotionally the same way one would get over falling out with a friend or getting fired. But I don’t want to spend the rest of my life isolated from anyone else who can understand my experiences, or feeling like my existence is just a constant loop of retraumatizing myself whenever I try to consciously exist in my body for any length of time. Any advice is appreciated, though if it costs money I may not be able to take it for a while at least, as I am a university student and thus poor. Thanks for reading.