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The original was posted on /r/ehlersdanlos by /u/ChinchillaBungalow on 2023-10-02 12:30:29.

ETA: HSD is a form of symptomatic hypermobility and not what I’m referring to.

Benign hypermobility is amazing and genuinely interesting, and you can’t always assume benign hypermobility off of limited interaction. Hypermobility both benign and harmful are both incredibly large spectrums and assumptions/comparisons help no one.

However, I’m not “just stretchy”, people keep saying I’m “just stretchy” and that EDS doesn’t come with other symptoms. The assumption/belief that EDS is just being a little bendy is incredibly harmful and reduces access to things like necessary accommodations because people don’t think you need to accommodate simple bendiness. Yes, I’m bendy. But I’m also in pain, nauseous, and can’t stand for long and would like people to be aware of that being part of my EDS. Others have different symptoms. Symptomatic hypermobility is more than just being bendy.

Or, alternatively, they say I’m not hypermobile at all (even benign hypermobility) because I don’t have MCAS?

I’m diagnosed and while that doesn’t make me any more “valid” than someone undiagnosed, it makes it even more frustrating that people think they know more than my doctors.

Hypermobility is a symptom of EDS, it isn’t all of EDS. I wish more awareness was brought to how EDS can effect people’s lives other than “party tricks”