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When I Don't Feel 'Disabled Enough' as Someone With a Chronic Illness

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How many of you who have fibromyalgia or similar chronic illness sometimes feel like you’re judged for not being “disabled enough?”

I know it sounds ridiculous, but I’m betting I’m not the only one who has felt this way when I’m out in public.

A few weeks back, I went on a rare evening out to see a comedy show/book reading with my husband and sister. As always, I had my walking stick and didn’t give it much thought at first. During the interval, however, we all went outside the main theatre to use the bathrooms. Perhaps inevitably, the queues were a mile long. Contrary to popular belief, we British folk do not all enjoy waiting in lines. Especially those of us who have limited mobility, back pain and spasms to contend with.

My sister pointed out there was a disabled toilet that wasn’t in use, and my first reactions were ones of denial. “That’s for people in wheelchairs or those with a ‘more severe’ condition than mine.” My sister and husband had to talk me into it as I stood with them, feeling self-conscious. Eventually I admitted to myself that I wouldn’t be physically able to stand in line for ages, and I relented.

The whole time I was walking over there, I felt like everyone was watching me (pretty sure they weren’t) and silently judging me (also pretty sure they weren’t).

Unfortunately most of us will have at some point seen those hideous memes that show people in wheelchairs standing up and captions declaring, “It’s a miracle!” Sadly, it’s still a common misconception that every wheelchair user is totally paralyzed and/or has no use of their legs at all. I know that crossed my mind as I imagined being judged as “not properly disabled” or “not disabled enough” to use the disabled facilities.

Ignorance from a few online meme-makers and sharers is partly why I wasn’t sure if it would be OK to use the disabled restroom. I think another reason is the way those of us who are unable to work are made to repeatedly prove the seriousness of our conditions in order to get the benefits we’re entitled to receive. However, the main reason is my own stubbornness and the (very wrong) story that I tell myself about being fine when I’m obviously not.

Nobody at the theatre complained about me using the disabled facilities (or even noticed, probably), and I’m fully aware that I was projecting my own issues and insecurities. However, when disabled or chronically ill people are often treated badly by governments, certain members of society and the people who make those dreadful memes, it can cause a bit of paranoia. Add onto that the invisible nature of fibro and similar conditions and we’re no strangers to being misunderstood and misjudged.

Those of you who distribute distasteful memes mocking the disabled and chronically ill, please reconsider. It might be funny to you, but it could be hurting someone else. The same goes for those people who leave angry notes on strangers cars to say that they don’t look disabled and therefore shouldn’t be using that parking space. Don’t judge without all the facts. After you have all of the pertinent information, still don’t judge — it’s not very kind.

Finally, for those with fibromyalgia or similar chronic illnesses who doubt themselves or worry about being judged by others when they’re out in public: you are not alone. I hope you can learn from my momentary lack of confidence. Remember that if you can keep going regardless of severe pain and fatigue, you can also learn to ignore judgment from strangers and believe in yourself and your condition, without feeling the need to prove anything to anyone.

Getty photo by JustNArtist.

Originally published: July 8, 2019
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