There’s this idea I’ve seen floating around in certain CI spaces that I really don’t like, and that is the idea that every person with dysautonomia (or POTS, because a lot of people forget POTS is not the only type of dysautonomia) has hEDS.
I’ve felt almost ostracized from a lot of CI communities and pages because I don’t have hEDS. hEDS is treated as the “bigger” disorder a lot of the time, which means dysautonomia is treated as an afterthought. It is very hard to find dysautonomia-specific groups that don’t eventually end up being hEDS groups with the occasional mention of dysautonomia.
I don’t have hEDS, nor do I have any other kind of EDS or hypermobility. I don’t relate to a lot of what they are saying, which is fine, obviously. But I’m so tired of the belief some people have that you can’t have dysautonomia without hEDS, or that everyone with dysautonomia has hEDS. That is simply not true. I see so many posts that imply or even directly state exactly that. I even saw one doctor say that if you have dysautonomia, you almost definitely also have hEDS, because hEDS is the cause of dysautonomia, which is just blatant misinformation.
I’m just tired of this attitude. I’m tired of not being able to relate to 99% of the people who post in my own community just because I don’t have hEDS or any of the other disorders common in these circles (MCAS, GP, ME/CFS, Fibromyalgia, etc). Dysautonomics without EDS do exist, and there are a lot of us. Please stop trying to say we don’t.
Also please know I am not calling out anyone in particular. This is just something I see a lot that kind of concerns me.
