Fibromyalgia Awareness Day

May 12^th 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.

Unmanned and Unmoving

Almost 90% of people diagnosed with fibromyalgia are women.

However, we don’t really know whether fibromyalgia is more
common in women than in men.

Confused yet? Today, we will attempt to explain this paradox in three different ways: statistically, medically and sociologically.

Firstly, statistics. The logical inference from the 90% statistic should be that women are just nine times more likely to have the disease. This wouldn’t be unheard of; red-green colour blindness is more common in men by a factor of thirteen because of their genetics and osteoporosis is four times more prevalent in women due to anatomical differences. But we are yet to find any scientific reason as far as fibromyalgia is concerned. And that really ought to be the end of this post.

Diagnostics

Before any problem can be dealt with, it needs to be identified. This axiom applies doubly within the field of medicine, where treatments required by some patients are potentially lethal for others. As such, the first step on the journey toward combating a disease is usually a diagnosis. Your doctor asks you some questions, runs some tests and then comes to a conclusion about what is wrong with you. From there, you can discuss treatment options and move on.

Of course, all of that is far too conventional for an invisible illness. So let’s deconstruct three of the false assumptions that you just accepted, comparing them to a typical fibromyalgia diagnosis.

Invisibility

As children, almost all of us had the opportunity to discuss a very serious question: if you could have one superpower, what would it be?

Many children wish to be inhumanly strong, to manipulate natural and cosmic forces, or to live forever – all logical responses for anyone looking to help others or just to get their own way. But in every group, there is always somebody championing the cause of invisibility, to go anywhere and do anything without being noticed. It’s no accident that in a world overflowing with magical artefacts, Harry Potter relies most frequently upon his invisibility cloak.

Of course, the power must be qualified. Children who consider it usually stipulate that they should be able to alternate between visible and invisible at will, rather than being permanently invisible. And granting invisibility to people other than ourselves is something that we prefer not to consider – indeed, much of the debate over privacy in the twenty-first century stems from our innate, animalistic fear of being spied upon by predators whom we cannot detect.

But there’s also a beautiful temptation underlying the notion of invisibility, for it offers us the chance to see things without impacting them. We already know how other people act in our presence, but we wonder what more they might be saying behind our backs. Conversely, an invisible person could impact things without being seen, suspected or reprimanded. Or judged.

Having an invisible illness also has a strange beauty.

Not What You’d Expect

When you hear the word ‘disease’, what image springs to mind? Whatever it is that you’re currently thinking about, it probably resembles something like the flu in a lot of ways – the influenza virus enters your body and causes a clear set of symptoms, which disappear after your body fights back and/or you receive the proper treatment. You can and should be immunised against the flu, because otherwise it could take you through a series of predictable but intensifying stages that could potentially end in your death. Whatever disease came to mind first, I’m guessing that it ticked most of those boxes.

But now it’s time to leave those assumptions behind as we consider fibromyalgia, because virtually none of that applies. It’s so atypical that it’s easy to get confused. So here are some simple definitions, with the promise of some not-so-simple analysis to follow below.

I have fibromyalgia.

If you don’t understand what that means, don’t feel like you’re being insensitive. I don’t necessarily understand what it means, either. But I do understand that I am sensitive. Overly sensitive, actually. I suppose that’s a good place to start.

Picture yourself stuck in an alley. The darkness is thick and foreboding. The smallest sound catches your attention, sends your heartbeat into double time. Something brushes against your arm, so lightly that it must be imagined, and you jump backwards, frozen with fear despite the adrenalin pumping through your veins. Are you frightened yet? Just reading this description, has your breathing altered? Have your eyes narrowed? Is your subconscience ready  to turn and run?

Our bodies are designed to protect us using a series of reflexes, most of which we rarely notice.
The lights go out? You’re on guard.
Standing by a ledge? Your fear makes you cautious.
Hear a loud collision? The shock prepares you to escape.
It’s bitterly cold? You overwhelmingly desire hot tea and a warm bed.
Sprained your ankle? Putting weight on it hurts, so you’ll elevate it, helping it heal.

My brain thinks that I am stuck in that alley. It thinks that the lightest touch, the smallest pressure, is a threat dire enough to warrant that most fundamental flight-or-fight reflex: pain.

We Believe, In Pain

It pains me to say so, but it’s not every day that you’re told you have a chronic disease. And I mean that literally, for every word of it contains a significant truth.

Let’s start with the obvious part: ‘not every day’. Mercifully, it is highly unlikely that anyone will ever have more than a handful of chronic diseases, let alone so many that a new one can be discovered every day. And unless they involve memory loss, most diagnoses only need to be made once.

Far more serious is the content of that diagnosis: ‘you have a chronic disease’. It’s a statement that changes your life and alters your future. It isn’t a lifeline because you aren’t expected to recover but it isn’t a death sentence either. It’s a reality that you have to live with.

‘It pains me to say so’ is the personal part. In fact, it literally pains me to do just about anything. You see, the main feature of my own chronic disease is constant and inexplicable pain. My nervous system is in an overdrive so unpredictable that every movement hurts. And that’s on top of the emotional toll it takes to explain that to the word and instantly shift their perception of me.

Which brings us to the final truth, the only word we haven’t yet covered: ‘told’. People don’t tell you that you’ve got a chronic disease. They try as hard as they can to avoid talking about it. Your doctors don’t like to confirm it, your family doesn’t like to confront it, your friends don’t like to mention it and you yourself don’t really want to face it – but you must. Or at least, I must.