Loving with scoliosis
I was diagnosed with scoliosis when I was 17. On the one hand, it was affirming to have an explanation for the back pain, poor balance, and stitches I’d get when running. On the other, it brought a wave of body dysmorphia, labelling me as ‘other’. I’d only heard of scoliosis in the context of Richard the Third and in similarly negative lights, which only made me feel like more of a freak.
“I was afraid to be touched by anyone when I was in my brace, for fear of them knocking me over or finding out what was under the big coat I wore”
I saw a specialist and got a scan, which told me I had a 41.5° curve and a twisted torso. My mum was quick to research, and found a variety of people who might help: a surgeon who could put a metal rod in my spine (I decided the operation wasn’t worth it as I’d end up with drastically less range of motion (metal rod = no bending my back), but he said my curve was likely to progress by 1–2° each year), and a specialist in the ‘Schroth’ method (the surgeon didn’t like this method, and the exercises were painstaking and time consuming).
I was desperate to be ‘normal’ and without pain, so I got a back brace in my second year of university. It was a huge, bulky, rigid thing and even more painful to wear than the day-to-day pain. This pain was different though: it was good pain, what I deserved, and would ‘cleanse’ me of this deformity. Kim K’s waist trainers really had nothing on this contraption. When wearing it I had minimal stability and range of motion and could only eat a few bites of food before becoming full or feeling sick (not great for a bulimic, but that’s, quite literally, another story).
“I hated myself, and couldn’t accept love… why would anyone want to date me like this? I would fill with anxiety when people tried to touch me, my whole body tensing and my skin feeling like it was on fire. Being drunk helped, so I did that a lot.”
What I didn’t expect, though, was the recluse the brace would turn me into. I was afraid to be touched by anyone when I was in it, for fear of them knocking me over (it removed all core stability when it was on) or finding out what was under the big coat I wore. I felt huge, like I took up too much space. Eventually, I didn’t even want to be in the same room as my parents when wearing it, and the fear of being touched transgressed to when I wasn’t wearing the brace too. I hated myself, and couldn’t accept love… why would anyone want to date me like this? I would fill with anxiety when people tried to touch me, my whole body tensing and my skin feeling like it was on fire. Being drunk helped, so I did that a lot.
“the instinct to recoil and distance myself physically along with the deep-seated feeling that I’m not good enough makes that difficult. In putting physical distance between myself and others I’ve put emotional distance too”
For obvious reasons, I’ve ditched the brace, but some of the body dysmorphia and fear of touch remain, and I still struggle with romantic and familial intimacy: the instinct to recoil and distance myself physically along with the deep-seated feeling that I’m not good enough makes that difficult. In putting physical distance between myself and others I’ve put emotional distance too.
“people who seek to expand the definition of disability beyond immediately visible conditions have been invaluable”
I wish this story had some sort of “it’s OK now” resolution, but it doesn’t really. However, discovering concepts like ‘dynamic disability’ and people who seek to expand the definition of disability beyond immediately visible conditions have been invaluable. Finding communities with shared experiences is comforting, so I can only hope that my own story might help someone else.