Thereâs this idea Iâve seen floating around in certain CI spaces that I really donât 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.
Iâve felt almost ostracized from a lot of CI communities and pages because I donât have hEDS. hEDS is treated as the âbiggerâ disorder a lot of the time, which means dysautonomia is treated as an afterthought. It is very hard to find dysautonomia-specific groups that donât eventually end up being hEDS groups with the occasional mention of dysautonomia.
I donât have hEDS, nor do I have any other kind of EDS or hypermobility. I donât relate to a lot of what they are saying, which is fine, obviously. But Iâm so tired of the belief some people have that you canât 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.
Iâm just tired of this attitude. Iâm tired of not being able to relate to 99% of the people who post in my own community just because I donât 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 donât.
Also please know I am not calling out anyone in particular. This is just something I see a lot that kind of concerns me.
