You may or may not know it, ladies and gents, but today (well, recent yesterday – May 12th) is Fibromyalgia Awareness Day. I can’t tell you how many times I’ve thought about what I’d write here on this day, and how many times I decided not to because of people like this (and the ensuing commenters) that made me feel embarrassed and ashamed for who I am. For doubting myself, and what I know about my body. I even contemplated skipping it this year, because in reality I’m the first person who’d like to say that nope, nothing is wrong with me, not a gosh darned thing. I fight myself on a regular basis to believe that everything is normal. Alas. Things happen, symptoms flare up, and I can’t deny it. I’ve broken down in tears already twice today, and a few more times in the past week in sheer frustration with my body. In attempting to look for a brighter side, I’ve decided to take it as a sign that I shouldn’t keep my mouth shut today. So, I’m going to say it.
My body is a drama queen: I have fibromyalgia.
I don’t say it often, and many of those who deal with the condition avoid it, since many people have no idea what it is, that it exists, and/or will take every measure to deny that it’s real: That it’s all in our heads; that we’re being dramatic; that we’re just claiming constant pain for the prescription meds; to beg out of work. And, hey, maybe there are some drug addicts who love any excuse to get pain medication. But, really, I’d say all of this is pure poppycock. Most of us would prefer to be normal, to not feel this way.
But what is fibromyalgia, you ask? It’s a kind of complicated syndrome consisting of an umbrella of conditions/symptoms/afflictions that fall under it. But, to describe it most easily, it’s a chronic pain condition. It can be a bit of a mystery since no one really knows exactly what causes it, and because it manifests itself somewhat differently in all those who deal with it, so it’s famously difficult to diagnose. For some people it takes years. I was fortunate, because I grew up with a mother who has the condition, so I had an idea of what it looked like.
I’ve probably had it my entire life to some extent – I had chronic leg pain as a child, which my doctor liked to call growing pains. I thought that was likely incorrect even when I was a kid, because I never grew all of that much. I’m a touch over 5’1″, and have always been a bit of a runt, so I didn’t really believe that I had constant trouble sleeping because of the pain in my legs because I was growing. And you know what, those pains came back a few years ago to my shock. Hah, I thought, so much for calling them growing pains. It’s a hard feeling to describe, but it’s kind of like having a headache but in your legs…. if that makes sense. As a teenager, my muscles would get wound into complicated knots that made simple things like sitting still, or standing severely uncomfortable to painful. I didn’t think a ton of it at the time, as I was a dancer, and we all suffered from aches, but apparently mine were a bit more…something.
No, I didn’t realize anything was really wrong until the summer between my junior and senior years of college. The summer started off amazingly, I had just completed a fashion show for a local museum with my best friend, I was taking an interesting summer class, and I was planning on working on a bunch of designs to beef up my portfolio prior to my impending graduation. And I think the onslot of oddities happened slowly enough that it took me a while to realize that something was most definitely wrong.
I think it might have been the sleeping problems that came first. Either I couldn’t get to sleep at all, and/or I couldn’t get enough. No matter how much I’d slept, even if it wound up being most of the day, I’d still be exhausted and my body would only want to sleep. It was kind of scary to have slept all day and then fall asleep when trying to study for the exam for a single class (I usually took 5 or 6, with multiple being studio courses). I never had a problem with that sort of thing before. Ever. Then there was the fatigue. Which is this wholly different feeling than being just tired. It’s like having sandbags attached to your arms and your legs so that everything took so much effort. I was exhausted walking down the street. I felt woozy trying to stand and make a pattern for a skirt. I had to go lay down, or I thought I might pass out. I had trouble concentrating, something we like to call it brain fog. You forget the stupidest things. I had a constant headache. My muscles contorted and hurt in a way that made me feel like I’d spent 12 hours in a dance rehearsal, but I hadn’t. I was barely able to do anything. And it went on and on. My body went haywire on me, and there was nothing I could do.
I remember only so much from that period. I know I was miserable, and horribly frustrated. I felt completely and utterly useless. I felt no one could ever want me or love me like this. This mess, this shell of a person. I thought of all of the things I used to do, and cried. This wasn’t me. Frankly, I was terrified. And I began researching furiously what could be wrong with me (yay internet). Mono? Diabetes (I love me some sugar)? None of it really fit. Then I started looking more into fibro, and it just felt right. It was a relief seeing myself on so many pages describing the illness.
(Basic symptoms listed as:
* Chronic muscle pain, muscle spasms or tightness, weakness in the limbs, and leg cramps
* Moderate or severe fatigue and decreased energy
* Insomnia or waking up feeling just as tired as when you went to sleep
* Stiffness upon waking or after staying in one position for too long
* Difficulty remembering, concentrating, and performing simple mental tasks
* Abdominal pain, bloating, nausea, and constipation alternating with diarrhea (irritable bowel syndrome)
* Tension or migraine headaches
* Jaw and facial tenderness
* Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold
* Feeling anxious or depressed
* Numbness or tingling in the face, arms, hands, legs, or feet
* Increase in urinary urgency or frequency (irritable bladder)
* Reduced tolerance for exercise and muscle pain after exercise
* A feeling of swelling (without actual swelling) in the hands and feet
* Painful menstrual periods
* Dizziness) (( you can read more places like here and here.))(((There’s lots out there, but even I get exhausted with trying to figure everything out)))
My first experience is trying to officially figure out what was wrong was with a general family doctor, who checked me out, asked me questions, and ran a series of blood tests in which everything came up normal (that’s the problem with fibro, doesn’t really show up in tests). He wanted to call what was wrong with me “Emily-itis”. Maybe it makes sense to me now, in a sense, since I experience it in my own way, but at the time I was horribly offended. I may’ve been only 21, but I knew that something was wrong with my body. I’d lived in it my entire life. Shouldn’t I know? Eventually, I insisted upon going to a rheumatologist, which is the kind of doctor who can diagnose fibromyalgia. She was my most favorite doctor ever. She listened to me, and examined me (by pressing on my trigger points while I spoke and inadvertently would yelp in pain when the oddest places were pressed). And she told me that I was a classic, textbook case of fibromyalgia. I was so grateful to hear those words I think I cried.
It seems silly, but it was a blessing to felt listened to.
After that, it’s a continuous series of learning to deal with living with a condition that will never really go away. I am very fortunate in that I seem to experience for the most part a somewhat lesser degree of symptoms regularly than many. Some people are in constant horrible pain. Some can’t rest or work or get any peace. I experience that, to a degree, but for me so far it seems like only one or two factors will be truly prevalent at once. And I go though phases where a rush of them will hit all at once, and it makes it harder for me to ignore and harder to deal with without acknowledging that I have this condition. And, while I was so grateful to know for sure that something was wrong, I do tend to want to forget about it. Any time an onslot of symptoms come on, I start to feel a slow terror descend that I’ll get as bad as I did that one summer. The thought scares me.
There’s actually a support community for people with these invisible chronic conditions called But you don’t look sick. Because people don’t like to believe in things they can’t see. I’m pretty good at hiding it, but I’m working on not feeling the need to do so as much. I’m trying to be more open. Like here, right now. I have some wonderful people in my life who accept me as I am, and who do constantly have to tell me that they still love me and want to see me even if I’m feeling far from tip-top until I get it through my head (like I said, I hate letting people see me down). I’ve learned to listen to my body. To take joy in smaller things. To slow down a little sometimes (I can easily become a workaholic). That I don’t always have to be perfect. To be even more empathetic to others; because even if you can’t see their pain, their troubles, it doesn’t mean they aren’t there.
And I don’t think I should have to be ashamed of that, of those lessons, of the condition in me that brings them about. I don’t think any of us should. I think we are all just trying to figure out how to best live our lives. And as my mom has always taught me that having this doesn’t have to stop me from doing anything in life, because she doesn’t let it stop her. Maybe I can’t always do it the way I want, or on my timetable, but I can still do it. And that there will be people in my life who can accept by body’s quirks (along with my personality one’s, ha).
That picture of me at the top of this post, is from when I studied abroad in China only a few months after dealing with my body meltdown. I decided I wouldn’t let it stop me, and it didn’t. And I survived. And I still am.
It is, like many things in life, a process.
Happy Fibromyalgia Awareness Day. Consider yourself a little more aware. :)