Fibromyalgia is something I speak about a lot. I’ve had to deal with this little demon for the last few years, but in that time, I’ve become a little bit of an expert on the subject. Because, when something takes over your life so completely, you become obsessed with it, and want to learn as much about it as possible in the hopes of eventually defeating it. Sounds dramatic, I know. But as they say, know thy enemy.
When I was being diagnosed, I saw so many medical professionals, and even now, I’m never away from them for too long, and I’m eternally grateful that we have such wonderful medical care. But, I’m still shocked and saddened by the number of professionals out there (not to mention members of the public) who either believe fibromyalgia doesn’t exist, or if they do believe in it, they’ve no idea at all how to approach it.
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Some of the things that people have said to me over the years got me thinking about the way people view fibromyalgia and the common misconceptions about it. So I wanted to clear some of them up.
1. “It’s not real.”
The big one. I’ve met so many people who don’t believe this is real. What scares me the most is that I’ve met medical professionals who don’t believe it’s real. Fibromyalgia is an invisible illness, and it’s one that’s hard to test for. It’s often shrugged off, considered an illness of hypochondriacs or dismissed completely. It’s one we’re told to just toughen up and soldier on with. But we need to stop and recognize that fibromyalgia is real. The pain experienced is real. The symptoms, emotions and consequences, they’re all real and the person on the receiving end is really struggling and needs help – if they’ve come to you it’s for a reason, don’t dismiss them.
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2. “If you exercised more, you’d feel better.”
This is one of my favorites, so I’m going to say it loud: You cannot walk off fibromyalgia. Going for a brisk evening walk, practicing some yoga and mindfulness or swimming a few laps in the pool will not fix fibromyalgia. The same way that the GET/PACE trials have proved ineffective and harmful for ME/CFS patients, exercise is not the answer to fibromyalgia. There are definitely people who may feel some relief when active, or find it helps soothe certain symptoms. But it’s not a one-stop cure.
3. “It’s an excuse to be lazy.”
OK, sure. I love lazy days, just as much as the next person. But do you know how boring TV is after you’ve been home for two weeks, all day, unable to do anything out of exhaustion other than sit, and watch, and stare? ‘Cause, let me tell you, there’s a lot of crap TV shows out there now. I miss the days where I could go out and explore the world, shop, be active and generally just be a person. Instead I get to live vicariously through the characters on “Grey’s Anatomy” from the comfort of my sofa. Just as good, I guess.
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4. “You wouldn’t be so bad if you lost weight.”
Ahh, my other favorite. Now, I completely agree with you – I’m sure many aspects of my life would feel a bit better if I lost a few inches. However, fibromyalgia doesn’t discriminate based on a number on the scales. One of my best friends is a recovering anorexic, at a healthy height and weight… and she has fibromyalgia just as severely as anyone else. With our energy and movement levels somewhere down near the floor, this just seems an impossible goal at times – especially with medication preventing it in many cases – and it is not a quick fix, it takes time, and often our symptoms can’t wait that long to be relieved.
5. “It’s a woman’s illness.”
I mean, I’m a woman so maybe I’m not the best person to answer this, but I know many, many men who also live with this, and haven’t been “hiding their real gender” all this time. This is actually used as an insult to imply that it
affects us because we are “weaker,” or ill-equipped to handle the pain without complaining or turning it into an invisible illness… I’ve never met anyone stronger than someone who lives with fibromyalgia pain day in, day out – male or female. Because, you learn to keep going even when your body is screaming for you to stop.
6. “You’re just addicted to pain meds.”
Ah yes. Somehow, we’ve all managed to concoct the exact same symptoms for the exact same illness, just to gain medication. For many people these meds are expensive, and require a sacrifice to be able to afford them. For others, they’re used to gain back just the smallest sliver of the person they used to be. And for most fibromyalgia patients, there’s no meds at all – doctors won’t prescribe them due to fear of addiction. Personally, I’m not addicted to painkillers – but I am addicted to the thought of not being in pain.
7. “You could work, you just don’t want to.”
Fibromyalgia symptoms fluctuate. Someone that seems perfectly healthy and well on a Monday, may then crash and be too exhausted and pained to move for the rest of the week. For a lot of people with fibro, it isn’t possible to maintain a job like this – and trying could result in them losing their incomes and their homes. There are still plenty of people who work with fibromyalgia, and often push themselves to the point of exhaustion and fibro flares trying to balance their work-home-rest life. Many jobs allow three periods of sickness leave before terminating a staff member (while this varies and there will be terms and exceptions); this can easily happen within one month for someone with a chronic illness.
8. “He/she/they can do it, why can’t you?”
There aren’t stages or levels of fibromyalgia, but each person may struggle with different symptoms and at different levels of severity. One person may struggle with a bit of extra fatigue, and flu-like aches when they overdo it, and the next person may spasm every few seconds and be in pain every minute of their day. Each person is different and it’s unfair to judge one person against the next, when they may be dealing with symptoms that aren’t even remotely similar.
Navigating the world of fibromyalgia is difficult and uncomfortable, it’s foreign territory, and often we need those around us to be supportive and kind. Please don’t make this journey any harder for us than it needs to be. For a lot of people fibromyalgia is still so much of an unknown, but for those like me, it’s become my life. We need to raise awareness for what fibromyalgia is really like, instead of all of these misconceptions.