Aibu to be so very angry and sad at medics taking 59years to diagnose me with something they could have diagnosed me with at 18months old with a simple test.
Backstory is that I was relentlessly bullied in my childhood by children and adults because I was always unwell and I had an unsightly rash on my body that resembled chickenpox or the plague or whatever the onlookers decided it was.
Drs just said eczema and I practically lived and slept in a bubble- i had this odd plastic sleeping bag for a while. I had plastic bags taped to my hands to sleep so I didn’t scratch and my nails were cut down so far the skin stung. I had a seriously uncomfortable rock hard special mattresses, I had to wear shorts and skirts in winter to let my legs breathe. My mum was told we were a dirty family by doctors, that we had fleas and bedbugs and I was malnourished. Through all this I was so very itchy it was unbearable- I still am but have learned to ignore it. Children weren’t allowed to play with me because parents thought I had infectious diseases or that we had fleas or were dirty. I was so ashamed growing up and I learned to hate myself.
Yesterday a rheumatologist told me it’s related to an autoimmune disease and that they’re a serious sign of a vasculitis flair. I’ve never seen this doctor panic before but it’s also the first time she’s managed to see these scabs all over my body.
All my life I’ve been unwell with unexplainable
symptoms. They referred me to psychiatrists who said I was mentally ill because the physical symptoms didn’t make sense and they thought I was faking being physically ill. They put on really strong anti depressants and antipsychotics medications and still the symptoms persisted.
I’ve been seeing a rheumatologist 14/15 years and they never knew what it was one would diagnose one thing and the next one I’d see would change it to something else and by now I’d done research and was fairly convinced it’s a rare vasculitis but Drs said it was too rare and they’d never see one case in their whole career and wouldn’t consider it. And now this one wonderful dr has seen it and agrees with me and tests confirm it. The Dr is setting up a multi disciplinary team because all my organs need monitoring for the rest of my life. This disease will likely kill me but now I know what it is.
Today I’m grieving for my childhood and teen years, for being outcast my whole life, for being gaslit by amily and medical professionals for having no friends to turn to because nobody wants to be friends with the sick unreliable person. I’m so sad and so angry. Aibu to be angry ?