Invisible Illness
What aspects of your rare disease are invisible to others?
My body pain , My vision getting blurry. The effects of cold and heat on my body
I have hurt and had trouble keeping up with others my entire life. I remember walking around the house crying at night, only to be told I would be given a reason to cry if I didn't go to bed and shut up. Until I was 12, I never said another word about it.
I passed out from pain while riding my bike. The Dr asked if I hurt and where. I said yes and everywhere. He asked how long. I said forever. I waited for my mother to come out of the office and she was upset. Not going into what happened after we got home as it has nothing to do with illness.
I was diagnosed with chronic bursitis, confined to bed for 2 weeks and on crutches for months. Several times over the years and with each pregnancy.
Over the years I got told to get off my fat ass and I would feel better. On the days I could not stand up, we had "crawling days" the kids thought it was fun!
At 38 I got diagnosed with PsA and Fibro. Dr thought there was more, but others just called me lazy, faking, want to be sick.....
At 60 I paid for my own DNA test and it showed 2 genetic neuromuscular disease, but I hadn't any insurance, so still couldn't get any help until I was old enough for mrdicare. After a year wait, I got in to a pain clinic. First day, with some physical testing, I was diagnosed with another genetic disorder called hEDS.
I went from quit faking, to holy crap! No on wants to treat a medically complex person! Pretty good faker, huh?
At 69 I can only nly stand/walk for 10 minutes now. Everything I have is invisible.
I wish Drs would look. If they can't find a reason, send them to someone who will!
Going till 66 to be treated for actual diseases you were BORN with, I'd cruel!it seems most of us born in the 40-50’s have similar stories. I was lucky in that my parents heard my cries, always believed they were real and took me from doctor to doctor, trying to find help. That I was diagnosed with hEDS at 74 is the mystery, but so glad we are from the generation that believes every women's ails are self cause from "just stress"!
That is their story and they are sticking to it, no matter what we day. They are the one's with the diplomas and what we claim, doesn't matter
I am sure men get listened to.....
Hair on face
The severe fatigue and bone pain
