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Why Fibromyalgia Awareness Matters So Much

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A few years ago, I found myself socializing at a formal event. Sounds fun, right? This function was trickier than usual, though, packed with hundreds of people but only a few dozen seats. My fibromyalgia made the experience a tactical operation: just to make it through the night, I had to carefully maneuver around the hall without ever standing up for more than a few minutes. I even managed to convince a friend to join me in my bizarre musical chairs.

As luck would have it, we were moving between tables when the music stopped and someone began to speak. Everyone quietly searched for nearby seats; my friend and I missed out in part because I couldn’t move quickly enough. Eventually we reached a table that was already full, two people sharing each seat, and had to make do with just leaning against the chairs’ backs.

Almost immediately, pain spread along my legs and I desperately needed to sit down. I recognized almost everyone seated at the table, but had not disclosed my fibromyalgia to any of them. I had considered it to be my private business, a weakness I was reluctant to expose. But now I was in a silent room, in intense agony, unable to explain it or do anything about it without making a scene. And the speech wasn’t getting any shorter.

Oh, right. There’s something I forgot to mention earlier. The other reason I’d missed out on a seat. You see, the friend I was with had sprained his ankle that morning. He was using crutches.

Eventually, someone sitting in front of us turned around. She saw the crutches and gestured to my friend, offering her seat. He shrugged back, indicating that he was happy to stand, but she insisted, standing up and pushing her seatmate up too. My friend just motioned to me, an invitation to sit.

I managed to hesitate for half a second before the pain took over. By then, though, every face around the table was watching: about 20 people stared in disbelief as I unapologetically pushed past someone on crutches and relaxed upon the chair vacated for him. I endured pointed looks of derision and abject disgust for the next 20 minutes. Afterwards, I had almost no time to try explaining before the music surged and the group dispersed. My friend laughed it off, but I was shaking, partly from the pain (which would have me bedridden for the entire next day) but mostly from embarrassment.

I like to think all of us would offer our seats on the bus to anyone elderly, pregnant or injured without hesitation. We see them and immediately judge them as worthy recipients of our care. But if people appear to be “normal,” the same thought process often judges them unworthy.

Without taking anything away from anyone leaning on a visible crutch, we need to recognize that many illnesses are invisible. All around us, people are living with migraines and pain, insomnia and fatigue, digestive and neurological disorders, depression and mental illnesses and even just long, difficult days. We can’t see them, but we certainly tend to judge them – we don’t know any better. We judge them for requesting breaks, for getting agitated, for going home early, for complaining too much, even for simply sitting down.

People with fibromyalgia often pretend to be healthy. We can lie through our teeth when asked “how are you?” and smile when told “you’re looking better,” though we’re actually just getting better at acting. I could go out every second day and recover every other day just to avoid being judged. But sometimes I just need to sit down. And if my normality is a lie, every moment of weakness will be an embarrassment.

I don’t want people to know I’m not well and think less of me because of it; I don’t want special attention and I don’t want to stand out. But the choice between dishonesty and shame is a false one, because fibromyalgia isn’t a social disease – not if you don’t think it is.

If you don’t need to presume, I won’t need to pretend. If you are aware of the problem, I can admit to it. If you look out for invisible illnesses, you will know better than to judge, and all of our disorders and our bad days will be easier to bear.

My fibromyalgia is difficult to define, difficult to understand, difficult to predict and difficult to escape. But that is why your awareness matters so much – because the only symptom that can be cured is the social stigma, and only you can alleviate it.

This story originally appeared on We Believe in Pain.

Getty image by FX Quadro.

Originally published: May 24, 2019
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