by Shaker Annaham
Greetings, Shakers! I'm Annaham, and I run the somewhat sporadically updated HAM.BLOG. As some of you may know, I have a chronic health condition called fibromyalgia—it is characterized by constant muscle and joint pain of varying degrees, and extreme fatigue. I like to call fibro the bastard child of Rheumatoid Arthritis and Chronic Fatigue Syndrome. [If you'd like to know more, please refer to the delightfully neutral Wikipedia entry].
Despite the publicity that fibro has been getting lately from the MSM, there are still a ton of misconceptions floating around that, as someone with the condition, I deal with on a somewhat regular basis. In this post, I will address some of these myths. Also, please keep in mind that I am just one individual with this condition, and I do not claim to speak for all people with fibro. Regardless, many of us deal with the disbelief, mockery, and unsolicited advice which are sometimes sprung upon us by "healthy" people; some of these pieces of "advice" are things that I will address here. Before I get started with yet more of my world-famous verbosity and cynicism regarding invisible illness, I want to thank and give an internet high-five Liss for letting me guest post.
Myth #1: Fibromyalgia is just a condition that was made up by pharmaceutical companies; therefore, they are trying to profit off of you.
Despite the fact that hating Big Pharma and being suspicious of them—and, to a lesser extent, of anyone who takes prescription medication for bodily issues that they cannot control—is en vogue now, fibromyalgia and conditions like it have actually been around for a long time. The television commercials and public "awareness" may be new, but the condition is not.
Also, whether or not I take my medication usually means the difference between my being able to get on with my day, or my being confined to my couch. I could eschew the medication and suffer, or take it and suffer less. Certainly, there are problems with Big Pharma, but the fact that some medications—gasp—actually improve the quality of life for some of us does not mean that we are "buying into" the promises of the pharmaceutical industry like corporate zombies. For some of us, medication can sometimes mean the difference between a good day and a bad one, and it is not up to others' paranoia to make our decisions for us.
Myth #2: You must have not properly taken care of yourself/had the right attitude/visualized your reality properly, and that's why you have this condition.
Out of all of the myths surrounding fibro, this is the one I've had hurled at me the most; epic irony lies in the fact that this one mostly comes from ostensibly well-meaning, new age "progressives" who are totally into The Secret or other such tripe. Some believe that if they just exercise constantly, are super-vigilant about their health, visualize their "reality," or have the right attitude, they will be protected from bad things ever happening to them. News flash: Bad things will and do happen to all of us.
Illness and disability are not moral issues; the condition of a person's body due to things that they cannot control should not be held against them as some sort of "proof" of a just world, or as proof that bad things only happen if you don't have the right attitude. Whenever someone breaks this chestnut out, I always want to respond with, "That's great that you've never had any major health problems, or that no one close to you has experienced any. I look forward to seeing you when you realize that you are wrong." Unfortunately, I haven't tried this response so far.
I believe that our culture has indoctrinated us into a line of thinking which posits that illness, or disability, is one of the worst things that can happen to a person. One may not hear comments such as "I'd rather be dead than in a wheelchair" anymore, but the attitude that illness and disability are irrevocably horrible dovetails rather nicely with the prevailing myth that anyone can control his or her body, and if they do not (or cannot), they are simply not trying hard enough to get better, and thus, they deserve whatever happens to them.
The idea that a "healthy" state of mind can prevent catastrophic reality from crashing in is not a new one, but, apparently, it is one that gives many people comfort. It is comforting to think, "I'm not like that. It will never happen to me" about a myriad of situations. Those of us who are invisibly disabled or ill—particularly those of us who, on good days, can "pass" as able-bodied or not sick—are a reminder to other folks that illness and disability can happen to them. It's scary, sure, but does it really justify such hatred and fear, masquerading up as concern or advice about the supposed importance of a "positive attitude?"
Myth #3: You can't possibly have a disability! You're young and you can still do stuff. What's so hard about having "pain"?
Here is a partial list of things that I have difficulty doing at times, depending on my pain and fatigue levels (which shift almost daily):
• Climbing stairs!
• Standing for more than 20 minutes!
• Doing the dishes!
• Brushing my hair or touching my scalp!
• Carrying heavy or unwieldy objects!
• Completing school-related assignments in a timely manner!
• Opening packages, containers, or cans!
• Giving or receiving physical contact of many kinds! (Yes, sometimes a slap on the back or a hug physically hurts.)
One of the most difficult aspects of fibromyalgia is that it does dis-able me at times—that is, it sometimes makes certain things almost impossible (or at least very, very hard) to do. The pain is difficult because, like an unfriendly specter, it is always with you. On a "good" day, it is at the margins of your body—always waiting for an opportunity to remind you that it can take you down in less time than it takes for an able-bodied individual to do any of the things on the above list. On a "bad" day, the pain is there as well, except it has you in its talons, and there is very little that you can do to fight it. The talons digging into every part of your body, every muscle, every joint, might loosen their grip just a bit, just to make you think that you're out of the worst. Without warning, the talons of pain might just release you for a precious few moments before digging back in. It changes from day-to-day for many people with fibromyalgia; one day, I might be fine, the next day, I might be unable to walk. I may be young, but youth, like a number of other things, does not give one a free pass to perfect health.
Myth #4: If you just took this supplement/drank this green stuff made out of lake algae and mold from the inside of a Alpine cave, you'd be cured!
There is no cure for fibromyalgia. Say it with me, folks: There is no cure. There are treatments; certainly, I have benefited from various dietary and exercise-related changes. These things do not, and probably will not, make my condition disappear completely. The changes that I have made may not work for everyone else who has fibro, just like some of the things that other people do might not work for me. If someone tells you there is a "cure" for fibro, it is a sad and unfortunate sign that they probably not a medical doctor, and they are a.) lying; or b.) trying to make you spend hundreds of dollars on milkshakes made out of acai berries and the blood of baby goats or some shit in the hopes that you'll fall for it and make them rich.
Myth #5: You're probably a hypochondriac, or making it up to get attention.
Look, I know we all love to watch or follow salacious and insipid "news" stories about people who make things up to get attention, but such individuals represent a very small portion of the population (this is part of what makes those stories so scandalous). An assertion that I'm "making it up," additionally, does not make a lot of sense. Why would anyone say and act like they have pain and fatigue which are, at times, nearly unbearable, and both of which medication cannot magically cure? Furthermore, I don't get a ton of sympathy for having fibromyalgia—instead, I deal with disbelief, weird looks and stupid comments much of the time.
This sort of comment also perpetuates the stereotype of women (most, though not all, of the people diagnosed with fibromyalgia and other chronic pain-centered syndromes are female) as complainers, desperate for attention, or manipulative bitches who will make things up just to get attention or pity.
Suppose that we don't even want pity? Many human beings want to be listened to and taken seriously. Those of us with invisible disabilities or illnesses, by and large, want the same. We are, in many ways, just like you. Of course, this is a huge part of what makes invisible disability and illness so scary. We walk among you.