Scoliosis Stigma and the Invisible Disability

“Eliana the camel has two humps.” That’s the chant I heard more than once as a teen. I don’t think it was meant to hurt my feelings, but it did. At that point, I lived with a very visible deformity and with it came the stigma behind it. I was Eliana “the camel,” and I did have two humps. As kids, as people in general, it’s hard to see past what is visibly in front of us. It’s hard to see a person beyond their visible disability, because it’s so clearly there. How do we look away? I get it. I am a person too. I am not free from judgements. But what I’ve found to be interesting throughout my life living with scoliosis is that the stigma that came with my scoliosis and my deformity was mostly erased after I had surgery (that is of course, with a few exceptions).

Prior to having my scoliosis surgery, I lived with two very visible spinal deformities. At first, I did as much as I could to hide them. I would wear baggy clothing, and I tried my hardest never to show off my shoulders. I was uncomfortable in my own skin and I didn’t want anybody else to see it. Eventually, I did grow out of that stage and I became a teenager, and just like everyone else, I wanted to blend in. I, too, wanted to wear spaghetti strap shirts and form-fitting clothes. It was my desire to look and dress like everyone else that made it easier for the world to see my deformity, and, unfortunately, the visibility of my deformity made it virtually impossible for me to blend in like the other kids. As soon as my deformity became visible to the world it came accompanied by stigma. But, it wasn’t like I was stigmatised by everyone. It was mostly people who I didn’t really know or who didn’t want to know me because of it. Stigma, in the case of spinal deformity, in my case, came because I was different. I didn’t look like everyone else, and that was difficult for people to accept and move past.

Post-surgery, my deformity was no longer visible, and because it was no longer visible, it was as if the world saw me completely differently. My deformity disappeared and so did most of the stigma that I once felt. It was as if my disability went from very visible to invisible, which seems like a great thing, but having an invisible disability makes it harder for people to empathise with my condition. There are times when I tell someone that I have scoliosis and it’s as if they do not take the condition seriously. They can’t see anything wrong with me, and thus the severity of my condition is presumed to not be so bad. Though I don’t live with the stigmas that I once lived with, I do live with an invisible disability, and living with an invisible disability can be just as isolating.

Being stigmatized is isolating and extremely challenging, but it’s just as challenging living with an invisible disability. Being aware of scoliosis and all that comes with it and offering support and compassion can free people from the isolating feelings that can arise. All it takes is one person to make a difference in the life of someone else.

2 thoughts on “Scoliosis Stigma and the Invisible Disability

  1. Great post, although I was never made fun of for having scoliosis I too tried to hide it by wearing baggy clothes. I too tried to overcome this and be less self-conscious but even today it still sticks with me.

    I would be curious to know, if you immediately felt better about yourself after your surgery? Despite been considerably straighter, I still went through quite a bad phase after my surgery as I think in my head i believed everything was going to be fixed and ‘normal’ however it definitely wasn’t. I don’t know how to explain but reading your post, the ‘invisible disability’ thing seems to suggest you still have a few internal things going on. Just curious to know what you mean by the isolation of an invisible disability.

  2. Hello! After surgery I had this pseudo confidence that didn’t last very long. I too believed that everything was going to be different, but it wasn’t because I still had scoliosis. It took a long time to accept this fact and be comfortable with who I am.

    What I mean be invisible disability is that because people do not see the deformity they do not understand the symptoms. For example, if I am invited to go on a hike, and say yes, but then I have to cancel, because I woke up on a bad day, it’s difficult for people to understand that there’s anything wrong with me. I look fine and thus I should feel like any other 30-year old feels. It’s isolating, because I don’t feel fine all the time and people have a hard time comprehending that. It’s that lack of comprehension that I face, which makes my situation isolating.

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