What it’s like to have a life-changing disability when you appear perfectly healthy

In June, I was sitting on the couch, covered by a light grey blanket to capitulate to my body’s desire to always be unreasonably warm, when a wave of nausea washed over me. There was a smell in the air, familiar, but disturbing. I realized within a minute that it was the stale odor of my sweat mixed with the wool blanket, and it all came back to me.

IIMG_0394 spent about half of last summer fitfully tangled in that blanket, sweating and sick. The opiates I was on post-spinal surgery were tearing at my insides. We didn’t know the drugs were at fault for three unbearably long months. During that time, the sweaty wool aroma seemed to coat everything in my apartment. And this summer, it lurks like a specter, sending me into bouts of anxiety.

This was all a result of the two spinal surgeries I had this past year to help alleviate the debilitating chronic pain that my scoliosis was causing me. I was born with it, but it didn’t become a literal pain in my ass until about four years ago. As soon as I decided to seek medical help rather than trying to tough it out for the next 70 years of my life, I took a journey down a medical rabbit hole that would have made Alice’s Wonderland look like Candy Land.

I had no idea that once the pain was gone, there would be social stigmas to face. And I was wildly unprepared until I stumbled upon the words “invisible disease.” After some Googling, I learned that thousands of people have invisible diseases that no one can see, and that can be tricky. I still recall one morning, soon after I returned to work post-op, when an elderly man asked me for my seat on the subway. (This was also the first day I left my cane at home – the one social marker that screamed “please God let me sit down before I collapse.”) I gave up my seat, not to be a martyr, but because I thought it would look like a mean lie if I uttered from the mouth that sits at the top of my healthy-looking 26-year-old body “sorry, I need this. I’m disabled.”

I was really excited to help elevate the conversation around invisible diseases in Julie Zeilinger‘s story this week: 6 things you must know about disabilities that we can’t see. If you give it a read, I guarantee you’ll be able to help at least a few people feel like they’re at their best when they’re at their very worst.

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