These are some of the 'well meaning' and 'well intentioned' comments I've gotten from people when I've told them that I have Fibromyalgia. I know that I am not alone in this. However, it just burns me. People with Fibromyalgia, Chronic Fatigue Syndrome and a host of other illnesses including hairing impairments, other autoimmune conditions and much more, have to deal with this seemingly helpful and kind sort of backhanded compliment.
I can be in pain and not look like it. I may look too good to be sick, but what's that really supposed to mean? Should I stop caring about brushing my hair and everything because I'm sick? There are some days that I can't do that, but no one says to me then..."my, you must have fibromyalgia!" They just think I was too lazy to care. I also don't wear make-up anymore because most of it just really aggravates my skin and perfume - fuggedaboutit. It's impossible for me to handle with all of my chemical sensitivities.
Unfortunately, if I tell people that, then I get the strange looks and the cocked-eyebrows. You know the ones. They make you feel like you're crazy. It just couldn't possibly be like that. "You're too sensitive!" Hell yes, I am. Fibromyalgia is a disease of sensitivity in many respects. However, it's my truth and I would like people to give me a chance to explain myself.
Boy, do I sound cranky? Maybe, I am getting my period (lol!).
Eleanor Roosevelt said it best, "No one can make you feel inferior without your consent." The longer I've had this disease, the more I realize how true that statement is. However, I don't think it's too much to ask to have people tell me I'm not sick and that my disability isn't real just because it doesn't look like it to them.
I had a woman crying on my couch just yesterday. She talked to me of her pain and her shame with her invisible disabilities. Her husband doesn't believe how sick she is; she had to struggle to get social security and now, she may lose her meager benefits. My neighbor has Lupus. Because she 'doesn't look sick', other neighbors get mad at her when she parks in the handicapped spots; even though she has a sticker!
Those things outrage me. Of course, if I told you my biggest pet peeve, which was --- we have about oh 5-10 pills for erectile dysfunction and impotence, but none that work for many invisible and visible diseases-- you'd laugh, of course. However, that's a story for another article!!!
