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14 things people with Ehlers-Danlos Syndrome said that were code for ‘I’m in pain’


Chronic pain is a fact of life for many people with Ehlers-Danlos syndrome, but this isn’t often well-understood by others. Oftentimes people with EDS “look fine,” so you might get a confused look or questioning comments when you tell people you’re in pain. As a result, many in the EDS community have come up with creative ways to say they’re in pain. This might include different ways of describing pain so people without EDS understand what you mean. Or, it might be a phrase that helps deflect what you’re feeling if you’re not up to talking about it or just want to be polite.

We wanted to illuminate the different ways our EDS community talks about their pain, so hopefully loved ones can have a better sense of how they’re feeling and that even if they “look fine,” they may not actually be “fine.” So we asked our community to share some phrases they’ve used that were actually code for “I’m in pain.”