I'm new here. I've just been given a working dignosis of Vasculitis from a skin biposy but they think they will be refining my diagnosed to Behcet's Disease. So far it seems to be affecting my skin - several rashes, lungs - waiting on biopsy, mouth with severe multiple ulcers, possibly nerves - I have numbness and tingling in my arms and legs and I've had Bells Palsy four times so far in five months, joints and muscles with severe pains and stiffness, my bowel has also been damaged but they don't know if it's from the vasculitis, the optic nerve in my right eye is thinner then it should be - I don't really understand this and I'm waiting on further tests. In the past I've also had periods where I would collapse and have seizure like shakes but I would be awake. At the time they thought it was MS but they couldn't find anything on the tests so they wouldn't persue it any further. I also have crippling headaches about three times a day. I've been very sick since November but many of the symptoms have been going on for about 20 years - I'm only 32.
What I'm finding the most difficult to deal with is that now it's been confirmed that I'm actually sick and it's not just in my head my family and my husband especially doesn't seem to be very concerned. It's like they just expect me to carry on as I did before. I've even had people say well now you're not just a hypochondriac and I'm constantly told "if you were a horse we'd shoot you". I know that they don't mean it but I feel like my illness is being belittled. I know they wouldn't say this to somebody diagnosed with Cancer.
Does anybody else feel like this or have any tips on how to deal with it?