I don’t know about you but over the years I’ve hear that hundreds of times.
I was diagnosed in 1989 at the age of 24 after repeated Uveitis episodes resulting in an Atropine injection in my eyeball and 3 weeks later steroid in what looked like a spider sack under my eye. With skin issues and joint problems coupled with Mouth and genital ulcers I was feeling a bit under the weather.
2 years until it burns out became 10 years until it burns out which became sorry chum, you’ve got it for life. Since then I’ve had Erythema nodosum, a blood clot in my lung, lesions across my back, a grumpy attitude leading to depression and happy tablets as a result but through it all no one realises I am unwell.
Here I am almost 30 years later and like all other sufferers of what is an annoying, painful and mostly hidden condition I just get on with it as best I can. I take my hat off to everyone of you who has this worse than I do. I really feel for you.
I highly recommend using a centre of excellence if there is one near you. In my case the 100 odd mile round trip is worth it to talk to medical professionals who know what Behcets is. They and the support staff at the London Centre of Excellence have been patient, caring and genuinely interested in how I’m getting on.
Lastly. I’ve never got over the rapid weight I gained when I was put on prednisolone. Super fit to super fat, at least that’s how it feels to me. I’ve enjoyed playing hockey since I was 11 but the last 30 years of being 3 stone heavier than I was at diagnosis are starting to cause joint, back and knee issues just to balance out the behcets.
Oh well. Like all of you I’ll just have to crack on with it I guess.