3 Awkward Times Strangers Judged Me as a Young Person With Invisible Illness


meme about hiding a disease

This describes my life. Between developing rheumatic fever when I was 12 (and the subsequent lasting heart damage) and the onset of fibromyalgia symptoms four years ago, my medical notes are pretty hefty. I laugh about being able to accurately pick out my notes by a mile from the waiting room of my annual cardiology appointment — of which most are older patients — because at two-folders-worth they are the largest in the stack. I can laugh about it, but being a young person with an invisible illness has resulted in some awkward scenarios. I thought I’d share my top three with you:

1. On an exceptionally crowded bus, I was subjected to the obnoxiously loud conversation and pointed glares of two women in their late 20s who had just offered their seats to elderly passengers. Because I was young and healthy-looking, they assumed I should have stood up. Embarrassingly, the majority of the bus heard, too. For the record, on days when it’s feasible, I do stand for the elderly, pregnant ladies and anyone who needs a seat.

2. I once asked which bus goes to a location near my home, fairly close to town yet unmanageable at that juncture. The man looked me up and down and rather snottily replied, “It’s just down the road *points* that way. You’ll be able to walk it.” I explained that I had a chronic illness and couldn’t walk it. He looked me up and down again, huffed and then gave me the relevant bus number.

3. When shopping on a not-so-good day, I’ll often use the shopmobility service or the supermarket-provided scooters. Pretty much everybody stares. One middle-aged woman actually asked me rather accusingly why I was using one. To her credit, she looked rather embarrassed once she’d discerned I had a legitimate mobility issue.

The common thread here is a presumption that because somebody is young and not visibly disabled, they must be healthy. In the eyes of those people who stare or make comments under their breath, I am at best lazy and at worst selfish and/or faking it. But the “joy” of riding a mobility scooter around the shopping center isn’t worth all I’m missing out on as a 22-year-old because of “faked” fibromyalgia.

I wish those people would stop for a minute and ask themselves: Why would I fake my symptoms?

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