It's amazing how insensitive people are. Further proof of how Fibromyalgia is dismissed as a real illness is how people feel that they are qualified to tell us how to make ourselves better. As if we are not pro-active about our own health, as if we just sit around with our heads hanging low, feeling sorry for ourselves.
Uh no. Would they tell someone with MS that they need only change their diet or do some type of yoga or swirl around on some magical balance ball? What about Parkinson's? Cancer? Diabetes? So why is it practically a given that upon finding out we have Fibro, each person will attempt to school us on a disease they have no comprehension of?
I get that people think they are being helpful, but they aren't. What they are doing is adding more pressure to the pressure we already pile on ourselves. That pressure from society to be better or else.
I will say it again- Fibromyalgia is a very sensitive disease and everyone experiences it differently. We have shared symptoms, but our own version of Fibro changes daily, depending on what our bodies have gone through. Case in point, yesterday I was in a severe state of pain and fatigue, but today I woke up with a little more energy to fix the bed right away. This does not mean I feel 100%. It means that I have about 2% more energy then yesterday and if I rest all of today and all of tomorrow, perhaps MAYBE I will be able to handle my appointment on Thursday. 3 days of rest for one outing. No matter how I feel I have to go though. That's the thing- we have to pick and choose what we can do and most of the time we would benefit from simply staying in bed. The reason? Not some magical potion but sleep. Yup, sleep. Diet & exercise do lend itself to the disease, but not always in a positive way. Sleep, however, is the very best medicine we've got. It's not easy to fall asleep... Sometimes it can take hours even with the use of sleep aids. I'm not sure why but I know the fact that our muscles never relax has to contribute. They are always taut. When we do get to sleep sometimes we repeatedly wake up. It's a beautiful thing when we do get sleep and that is the number one prescription for this disease.
Aside from sleep, medication, diet, and exercise there is not a lot to be done for this illness, but you can bet your bottom dollar that we try everything we can.
I'll tell you what will be more helpful then unsolicited advice about a very real, debilitating medical condition... Simply exhibiting understanding when we cannot hang out or commit to plans. Encouraging us to rest, to not feel guilty about being sick, being kind and not sharing in the prejudice against chronic illness we face in this busy, go go go world we live in.
It makes all of the difference in the world when people stop trying to fix us, and instead, accept us as we are- sickness and all.
This disease is not laziness or exaggerated for dramatic purposes. We have a defunct immune system and a defunct central nervous system. There is something very real damaging our ability to process sound, touch, etc.
The day "they" discover the exact root of this illness and what it is actually doing versus just writing it off as "some pain and fatigue" that will be cured with exercise, will be a celebratory day. I look forward to it with all of my heart and I pray that none of you EVER experience the destruction of Fibromyalgia.
