Fibromyalgia Awareness Day

Profile2May 12th is Fibromyalgia Awareness Day and you can probably tell by now that it’s kind of important to me. But that doesn’t automatically make it important to you. We all have issues and we all deal with them ourselves, or with our closest friends – why spam social media with mine?

A few years ago, I found myself socialising 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 manoeuvre 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 – 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, the pain spread along my legs and I desperately needed to sit down. I recognised 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 seat-mate 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 twenty people stared in disbelief as I unapologetically pushed past someone on crutches and relaxed upon the chair vacated for him. For about twenty minutes, I endured pointed looks of derision and abject disgust. Afterwards, I had less than twenty seconds to try explaining before the music surged and the group dispersed. My friend laughed it off, but I was shaking, partly from the pain (that would have me bedridden for the entire next day) but mostly from embarrassment.

I like to think that all of us would offer our seats on the train 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 judges them unworthy.

Without taking anything away from anyone leaning on a visible crutch, we need to recognise that many illnesses are invisible. All around us, people are suffering from 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 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.

We can all pretend to be healthy. We can lie through our teeth when asked ‘how are you?’ and we can 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’ll 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 that I’m not well, and to 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 it isn’t a social disease – not if you don’t think it is.

And by you, I mean: YOU.

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 plain bad days will be easier to bear.

Dear reader, 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.

Thank you for reading, and thank you for your awareness.



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