Imagine hearing from your doctor, “you have a painful, debilitating disease, and there is no cure.”

Now, try to explain to someone who’s never heard of said disease that there’s no available testing, no truly reliable medicine, and no cure, and by the way, some days you feel almost normal, yet other days you can barely move your head off of the pillow, and it hurts just to breathe. 

That in a nutshell is the reality that so many of us (12 million Americans at last count) who are living with fibromyalgia deal with. We deal with the kind of ableism people with other debilitating diseases have to deal with, but often without the benefit of “looking sick,” to add further insult to injury.  The truth behind the mask of ‘wellness’ (which I can tell you from experience takes a LOT of effort to maintain- imagine having muscle weakness that’s so bad, you can’t even lift your arms long enough to complete basic grooming tasks) is that many fibromyalgia sufferers are pushing themselves beyond their limited capabilities, because they know that the world often sees them as ‘fakers,’ or ‘attention-seekers.’

But, surely 12 million of us aren’t faking it for attention, are we? The only thing that we are faking is that we can do everything that we used to, before this crippling disease took over our bodies, forcing us to hobble over when brushing our teeth, just to conserve energy, before the lower back pain, nausea and sweating sets in. We hold on to shopping carts for dear life, so that if our legs involuntarily buckle under, we can steady ourselves before we topple over in the middle of the cereal aisle of the grocery store. Wheels help us drag the cement blocks we once knew as legs behind us, also. And just for added fun and adventure afterwards, we get the muscle aches and spasms, cramps and feeling of being burned to a crisp by the sun, although we can’t possibly be outside long enough to get actual sunburn, and all just because we went shopping on a low pain, low fatigue day (what a mild case of the flu feels like to the rest of you.) 

Our batteries get drained much quicker than yours- it doesn’t make us weak, or self-pitying. It takes us longer to recharge than most people too- that doesn’t make us lazy, or unfocused, though our cognitive function might be compromised too. 

If this sounds depressing, well frankly, it is. But I’m still the same person I was before I got sick with not one (I also have Hashimoto’s, an autoimmune disease of the thyroid) so-called “invisible,” but chronic, diseases. What are the odds? Two years ago I was going to yoga classes, going to the gym, working with a health coach, and was generally well, apart from very occasional bouts of hypothyroidism. Yet, I always knew that there was something amiss with my immune system. Is this immune system malfunction also the cause of the fibromyalgia for me, or was it the slip and fall accident in 2014 that finally set the wheels in motion? The fact is, medicine and science have yet to find a definitive cause, but accidents, trauma and stress are all events known to cause fibromyalgia ‘flare-ups,’ when our bodies go all wackadoo, and our pain receptors go off like fireworks. It’s quite likely that I’ve had a mild form of fibromyalgia for years before it finally became serious enough for me to take notice of it. For example, there was a time a few years back when I was so overwhelmed with fatigue that I had to take a day or two off of work to recover. I was diagnosed with depression at the time, and promptly handed antidepressants. And the lower back pain has definitely dogged me since my yoga-loving days too, at least. But it wasn’t until I’d started to consistently notice a pattern of all-over, cyclical body pain that was beyond the norm, and a kind of bone-level fatigue that wasn’t alleviated by naps, that I realized that something was off. At first I thought it was my thyroid, acting up again, but after my tests came back normal I got the confirmation that what my intuition was telling me was correct- this was different. 

So pain, fatigue, sadness, I guess you and I will have to find a way to get along, because we are stuck with each other for life. I’m going to begin integrative therapy soon, which includes acupuncture, and a plethora of Eastern medicinal treatments. That is in addition to amping up the medicine I’ve already been prescribed for migraines, per doctor’s orders. As luck would have it, it’s also been given to fibromyalgia patients for pain management, so at least I won’t have to take any other pharmaceuticals for the time being. I’m wary of them at the best of times, and if natural supplements could reliably replace both of my meds, they would. As it is, I’m putting a lot of faith in CBD oil, because so far it’s working pretty well for me, and adding further pain relief. But this disease is unpredictable- I take an inventory every time I wake up, to see how far along the pain and fatigue scale I am, and checking for any other wonky symptoms I may have picked up overnight. One day it’s possible my eyesight might get weird, my hair might fall out, or the dizziness might get too bad for me to walk, but one thing that will always remain intact is my spirit, even on days when I want to chuck it in. That feeling of giving up never lasts, because I am reminded that I do matter, and I’ve got a voice, and it’s my life’s work to use it.