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.

Fibromyalgia is:

  • Greek – but also Latin. So being confused by the term is excusable, the first time. If you translate each root literally, it means ‘tissue and muscle pain’ and is pronounced fy-bro-my-UL-ja.
  • Incurable – Currently, we don’t know how to make it disappear. In scientist-speak, this is code for: we don’t really know how it works inside the body. If its biochemistry were understood, we would know how to go about curing it.
  • Unpreventable – We also don’t know what causes it, so we don’t know how to avoid it. The research indicates that some people have a genetic inclination toward it, which sometimes gets triggered for reasons unknown.
  • Chronic – It lasts a long time. Because it’s also incurable, fibromyalgia is a lifelong disease.
  • Non-terminal – Finally some good news; it won’t kill you. It does however correlate with a lower quality of life, and a significantly increased rate of mental illness and suicide.
  • Non-progressive – It doesn’t get worse over time like a failing organ, or move through stages like cancer would. There’s a huge asterisk here that we’ll be talking about some other time, but for now just know that even though the symptoms can worsen, on a technical level the diagnosis is static.
  • Variable – Different patients experience it differently. While some symptoms are common to everyone (widespread pain and pressure sensitivity), their intensity and location are not fixed, even within each individual. It also comes with a seemingly random cocktail blended from other common symptoms (fatigue, poor sleep, numbness, stiffness, difficulties with concentration and memory, bowel problems, depression and anxiety).

As you can see, fibromyalgia is a lot of things but conventional is not one of them. I promise that we’re eventually going to pick at that gap between my disease and your expectations, because it can create some unexpected problems. You might be surprised to ask me next week and find out that no, I’m not better, and you might get fed up with me for blogging on and on about it when I’m obviously not dying. But we’re going to begin with the feature that is the most important for the purposes of this blog, one more thing that fibromyalgia isn’t – visible.

If you look at me from across the room or pass by me on the street (and perhaps you have), you would have no idea that I suffer from fibromyalgia or indeed any disease at all. My nose won’t be running and I won’t be leaning on a crutch. I might even be smiling. Heck, you could be a doctor and I could give you a vial of my blood and you would still have no way of knowing for sure that I was sick. No way to understand the pain that I’m in, or the battles I’m struggling against. And if I stopped to explain these things to you, it would almost seem… unbelievable.

And that’s where we’ll be picking up in the next post. But I want to leave you with one final thought. The mental image that you started with, the influenza, the cancer or perhaps the severe gastrointestinal distress – you didn’t choose it by coincidence. It came to mind because of the frequency or the intensity of your prior exposure to it. You remember seeing it on TV, reading about it in a story or experiencing it yourself or in a loved one. You remember talking about it openly and perhaps even using it as a figure of speech which everyone around you easily understood.

You remember it so well, in fact, that it has become your own personal benchmark for what a disease should look like – for what I should look like, in order to warrant your attention, your sympathy and your assistance. Without intending it, your mental image of what it means to be sick has excluded many of the most prevalent and most sinister illnesses that surround you. It seems that those illnesses may be invisible in more ways than one.

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