I have fibromyalgia and have had it since at least 1996. For the first couple of decades I was lucky as the symptoms I experienced were relatively mild. I had some aches, pains and chronic migraines. The migraines were probably the worst, but then a few years ago, I took a bad fall and everything went straight to hell.
Suddenly I went from mild aches and pains with the occasional bad day, to mostly bad days, with the occasional mild day. I can’t do many of the things I used to be able to do, and the things I am able to manage take two to three times as long. It’s actually gotten so bad that I’ve applied for disability as I’m no longer able to work. I can manage a couple of hours of work around the house and then my body just refuses to do more. I have, in fact, had days where I had to call my husband from the yard because my arms simply refused to carry the groceries any further and my legs weren’t too sure they were going to carry me.
But then I’ll read an article about somebody else with fibro or some other chronic pain condition. This person will inevitably be in much worse condition than I am. Sometimes they spend most of their time in bed or on a couch, and sometimes they manage better than I do. At any rate, the result is the same: I feel like a fraud. I begin to imagine people looking at me and somehow knowing that I’m a fraud. I’m waiting for somebody to jump around a corner screaming, “Fraud!” Of course no such thing happens, for I am no more a fraud than they are. It simply feels that way because I’m not as ill as some others, a fact I’m very thankful for.
Then there’s the other side of fibro and other chronic pain conditions. Those people, whether because they’re lucky or because they’re in the early stages, don’t struggle as much as I do. According to these people I just need to move more, change my diet, pray more, meditate, practice yoga, believe in the great oogly moogly or all of the above. I know they mean well, I really do, but it is so frustrating. It’s especially frustrating when I’ve finally got my husband realizing that no, a little more exercise is not going to cure my fibromyalgia – and then along comes someone telling him that she has it and she just keeps moving, while taking over the counter pain meds because, “that’s all you have to do.” Maybe that’s all she has to do, but that doesn’t work for me. It used to, back when I was lucky enough to experience mild pain. But now…not so much. The problem with these people is that after hearing from enough them, I start feeling as if I’m not doing my illness correctly.
So here I am, stuck in the middle, with a lot of others I suspect. I’m either a fraud because I’m not as sick as some, or not doing my illness correctly because I’m giving into the condition. Damned if I do, damned if I don’t – and frankly, I just don’t give a damn anymore. I need to spend my energy taking care of me, I don’t have the extra energy to worry about whether others see me as a fraud because I’m not as sick as them. And I certainly don’t have the energy to keep up with those well-meaning souls who are still able to get up and go, mine got up and went and I doubt its coming back. The rest of you stuck in the middle with me are welcome to join me, lets not give a damn anymore!