When most people hear the word “fibromyalgia,” they think of those ridiculous pharmaceutical ads that make constant muscle pain and fatigue look like no big deal -- and like something that can be easily vanquished with a single pill. Those ads couldn’t be further from the truth. Nor could most of the mainstream media’s coverage of the condition (like this extremely questionable article from the New York Times).
The general consensus is that this disease, just a jumble of random symptoms, doesn’t actually exist. Further, a little pain is just something you have to deal with in life, and the less you whine about it, the easier it is for other (read: able-bodied) people to deal with you. Many of the reactions to fibro from people who do not have it are tightly braided with sexism and ableism. Just what are these women whining about, anyway?
For some folks, symptoms appear over a period of months or years; for me, the onset was sudden. I fell asleep during movie day in my Native American Studies class during my second year of college, and only woke up (complete with a thin line of saliva streaming out of the corner of my mouth) when the professor turned the lecture hall’s buzzy fluorescent lights on after the film had ended. I exited class feeling a bit tired and embarrassed, but shrugged the falling-asleep thing off as the consequence of not having slept well the night before. I went to bed at a reasonable time that night, thinking that this would solve my problem.
The next morning, I woke up feeling as if I had been working out for two days straight -- complete with intense muscle pain, a crooked neck, and sweat seeping through both my T-shirt and pajama bottoms. In response to this new set of issues, I made sure to get extra rest, this time adding heating packs to my strained muscles.
During the 11 months, the pain intensified, ultimately rendering me unable to do much most days other than go to class and then sleep. Then came the parade of “maybe” diagnoses from my GP and a few specialists: Arthritis. Chronic Fatigue Syndrome. Rheumatoid Arthritis. MS. Lupus. Crohn’s Disease.
Months later, I was able to see a rheumatologist. After a 15-minute examination -- during which she pressed on several of my joints and major muscles, only to have me yelp like a small dog nearly every time -- she diagnosed me with fibromyalgia. My response: “What the hell is that?”
“What the hell is that?” still seems like a pertinent question, even five years after my initial diagnosis, and the condition is extremely hard to describe to people who have never experienced chronic pain. Some days, it feels like demons made of fire are gnawing on my muscles, or like knives are stabbing me in every major muscle and joint -- and the knives have been set aflame. If I try to do too much -- say, first go out to lunch or dinner, then come home and try to do laundry or wash the dishes in the sink immediately thereafter -- the pain will flare up. If I get too stressed out from dealing with interpersonal drama, the pain will flare up. If I don’t get enough deep sleep, the pain and fatigue will flare up. If one of my other health problems decides to join the party, the pain will, too. If it rains, the pain will flare up. If I get too much exercise or too little exercise -- well, you get the idea.
The fatigue is less bothersome for me, but when it does flare up, it feels like I have taken at least eight Benadryls, and it shows in how I move around. I try not to go out on high-pain or fatigue days for fear of having strangers ask if I am drunk, or if there is something “wrong” with me. There are other symptoms that I deal with besides pain and fatigue: Sometimes I get nauseated from trying to read or watch TV; sometimes I get intense headaches for no apparent reason; sometimes I have insomnia even if I am really tired; sometimes my arm joints or neck muscles painfully “lock” in place and I have to move them until I hear a cracking noise that, to most people, would be a prelude to an ER visit. There are seemingly endless factors that go into whether I am going to have a high or low pain day, and I often do not know what my pain or fatigue levels are going to be until I am right in the thick of dealing with them.
To put it plainly, chronic pain and fatigue are utterly exhausting, and this is something that people without chronic pain do not understand. Living with chronic pain, and especially pain that is everywhere in your body and tends to move around, is like playing a really intense chess game that also happens to be life-sized, in that it is all about strategy and management -- not just of your everyday life, but about social aspects as well.
You might go out for dinner and a movie and have fun while you’re out, only to crash totally and spend the next day or so in bed and unable to move. Your friends might ask you to go to dinner and then to a club, and you know that you can only pick one if you’re having a good day, because on bad days you have to decline. So if you’re going to move a pawn or two, you may end up sacrificing a bishop, and you have to constantly weigh that trade-off.
Worse still, the sexism and ableism tied up with the public perception of fibromyalgia hasn’t exactly abated. Sure, women might make up 90% of the people diagnosed with the condition, but from public response you’d think that all of us with fibro have formed some Stonecutters-esque cabal and are constantly strategizing to get sympathy for pain that’s “not that bad.” (Secret: we aren’t, and it is that bad, sometimes.) And everybody -- everybody -- seems to have an opinion:
We get shit from so-called "liberals": Big Pharma is behind this! Do you really need all those drugs?
From conservatives: Fibromyalgia is just an excuse for people to whine [and something about big government]!
From people older than me: Aren’t you too young to have that?
From New-Agers: If you believe that you are sick, you will be sick! Also, you should try going sugar-free/thinking positively/putting your negative energy into this crystal that costs $80.
From lots of people: But if I can’t see your illness, how do I know you’re not faking? Women are always exaggerating things, after all.
From some feminists: But the patriarchy is making you think that you are sick! Big Pharma has obviously invented this “illness” to sell you drugs. Women are strong! Chronic pain and fatigue are the new hysteria (that last one is from feminist literary theorist Elaine Showalter).
Here’s another secret: I have found that, with the right combination of exercise and medication, I can manage the pain and fatigue pretty well. Psychologically, the pain and fatigue are things that I can deal with -- but I don’t live in a vacuum, and it’s when other peoples’ crappy reactions come to the fore that the stew of well-worn tropes about women (always looking for attention!) and people with disabilities (you brought this on yourself somehow!) gets especially frustrating.
Even with constant pain and fatigue, I enjoy my life, and there are a lot of things that I love doing and that help me deal with the fibro (and with peoples’ ridiculous reactions): writing, drawing cartoons, spending time with my partner and our dog, hanging out with family and friends (as long as they don’t want to go to dinner and go clubbing), listening to music, experimenting with makeup, and a lot of other stuff.
Life with fibromyalgia is not like a pharmaceutical ad, nor does it look like many able-bodied folks’ conception of disability (lying in bed looking sad, perhaps?); it is still life, albeit with greater physical challenges. I may be in pain most of the time, but I refuse to let that stop me from living.