Life with Rare Diseases

[Phoenix524]

Hi! I don't know if this is the right place for this, I didn't find anything better, so here goes:
I have multiple rare diseases. I am a severe dysautonomic, which presents itself as Postural Orthostatic Tachycardia Syndrome and gastroparesis. My POTS is mild, but my gastroparesis is severe. They are considering surgery. What I am asking is if anyone else is living with rare diseases or has any idea on how to live with them, medically and psychologically.

[Cooper197]

I deal with some not so rare stuff in the form of Cancer, but I feel like that can bring some of the same answers that you are looking for. Psychologically it just sucks and whenever I go to the doctor I'm a total wreck for a few days, but I try to just find the positive side of things and stay calm. Medically for me there is chemo, but luckily I've been done with that for a while now. Honestly it's all just scary, as I'm sure yours is too. Having friends and family there to support you is really the most advice I can give. That, and when somebody offers you help and support, take it. I decided for a while that I could do this and how I could just tough it out and that I didn't need them, which was just plain stupid. I needed them from the beginning and I should have known that. Talking about all of it helps too!!