I have a rare muscle condition, to the point where I feel like I have to be careful where I even mention it because it might make me identifiable. It’s pretty lonely sometimes because of the subset of people who have this condition, most of them don’t make it to adulthood and I really don’t have anybody to discuss shared experiences with.
Anybody else here in a similar boat?
Mine isn’t as rare but I’ve never met anyone else in real life who has it. And for 26 years straight I suffered it and saw multiple specialists, none of which ever even considered or knew about my actual illness. I have cyclic vomiting syndrome.
Not the same level of rare, but my main condition is diagnosed as “connective tissue disease - unspecified”. I’ve only ever met one other person with this diagnosis.
