Having had fibromyalgia for 20 years, I’ve tried many ways to communicate its impact succinctly, so someone not experiencing it can quickly understand what it is and have an idea of how it feels.
On many occasions I found myself pretty stumped in trying to come up with the goods. Or I’d feel like I had only described a small part of the condition. Example: I had talked about the constant pain, but not sensitivity to touch or light, or I’d mentioned brain fog but not the falls or the nausea. And I’d totally forgotten about flare-ups. The list goes on. This, combined with self-consciousness, where I wanted to keep the conversation upbeat meant I generally glossed over most detail and the moment was lost.
I think the trouble is that the notion of a diagnosis seems somehow to imply stagnation; that your experience of a condition is, broadly speaking at least, the same every day. As anyone going through chronic illness knows however, nothing could be further from the truth. A big part of the challenge is constantly adapting to new, often additional symptoms – it’s like there’s a cluster of daily symptoms, and then a whole network of weekly, or more often than weekly, symptoms and then satellite symptoms that come into play at different times sporadically.
Fibromyalgia is principally a neurological and central nervous system condition, though it invariably impacts on several other bodily systems also. It’s a labyrinth of triggers and symptoms and is often not the only chronic illness experienced by the individual. Although it’s marked by constant pain, fatigue and brain fog, the experience of it can be completely different from one month to another depending on which additional symptoms are at play in that time. It’s impact however, is constant and generally increasing. This, combined with the complexity of pain being less visible or quantifiable than other conditions often makes communicating fibro nebulous at best.
Recently however, I happened across a way of describing it that has really helped, so I thought I’d share. When asked what fibromyalgia is, I found myself saying:
“Imagine a massive electrical switchboard. There’s switches, lights, buttons, levers, you name it…Now, imagine the hard wiring of the switchboard is malfunctioning. Because of that, it’s causing these switches, lights, buttons, levers to go off at random. They’re in constant alarm mode. That’s pretty much what’s going on in my body and it affects nigh on everything the central nervous system is responsible for.”
Now, I’m not saying this is a comprehensive overview of fibromyalgia, but I found it very useful as a fast, succinct way of communicating the condition’s premise. What was interesting was how different the responses were. Prior to this, the most usual responses I’ve had were either, “But you can’t always see it,” or, “Hold on, you’re in pain all the time?”
Suddenly, the responses were:
Them: “So, does it affect your memory then?”
Me: “Yes – yes it does, particularly short-term.”
Them: “Can your body regulate temperature properly then?”
Me: “No – not for years.”
Them: “Do you lose consciousness?”
Me: “Well, faints, weak spells, all sorts, on the regular. I’m a dab hand at them truth be told.”
I also found the image of wiring was helpful in communicating some of the types of pain. For example, the burning, throbbing, nerve pain, electric like shocks, pins and needles, numbness, dead pain, etc. What I found most helpful however, was all of a sudden, the breadth of symptoms were easier understood without it becoming a huge long list I never manage to get through.
So, if you’re having a tricky time trying to communicate fibromyalgia, maybe give this a shot and see if it helps.
Getty Image by lucielang