Fibromyalgia has a lot of misconceptions attached to it. What do you wish people understood about fibromyalgia?
Foremost, I wish they understood that my canceling plans, or distancing myself, is not the individual's fault or my lack of wanting to be with them. It is the result of waking up with a flare unexpectedly. I still want to do things, but doing often leaves me down longer if I ignore the flare. It is like waking up with the worst flu, over and over. Doing means, I may be down 4 days instead of 2.
I wish they understood that just because they can't see it, does not mean it is all in my head. Sometimes a hug can hurt or itching my own arm can leave me aching for an hour.
Fibromyalgia is not just pain. While that is the biggest most cumbersome factor, there are many symptoms of fibromyalgia. I have heard, "oh yeah, my aunt has fibromyalgia, that is when you hurt right? Just push past the pain and you will get over it."
I have even had a doctor tell me, "fibromyalgia pain, won't kill you."
There are multiple symptoms and each one by themselves are tough to deal with every single day, add them all together, and sure depression sets in and it sucks.
Has any one told you that "you don't look sick?"
Many, many times, I have heard, " you look fine it must be just a mental illness. Have you seen anyone for depression?"
Tell us, who is your biggest support system while coping with fibromyalgia?
Support forums seem to help me the most, knowing I am not alone and that I am not going crazy. Others that are walking the same uphill miles, in some ways make me feel maybe we can get through this together.
My husband is the biggest support for helping me in day to day physical struggles. He has taken on a hobby job to free me from having to work in this season. But I feel I am letting him down by not being the wife I want to be.
Jesus is my biggest support, prayer and worship get me through the darkest days.
I do find support difficult to find, as people just don't understand and doctors are dismissing. You have to be active in seeking support, it will not just come to you.