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patient education

What You Don’t See Behind My ‘I’m OK’ Mask

key information

source: The Mighty

year: 2016

authors: Lucy Clapham

summary/abstract:

A lot of people say I seem to be a happy person. Others describe me as having a great sense of humor. Although I wouldn’t argue with these descriptions as I often have a big smile on my face, I am hiding a secret. I feel ill every single day.

Because of Ehlers-Danlos syndrome (EDS), I get pain in my joints and muscles constantly. My loose ligaments mean I am prone to subluxations, which are partial dislocations, and can leave me in pain for a number of days afterwards.

I also suffer from autonomic issues, which are common with EDS, including gastrointestinal symptoms (similar to irritable bowel syndrome), difficulty regulating my temperature and a thudding heart. I also have severe anxiety disorder, obsessive-compulsive disorder (OCD), and I am on the autism spectrum.

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