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27 Lessons I’ve Learned Living With Ehlers-Danlos Syndrome and POTS

key information

source: The Mighty

year: 2016

authors: Jennifer Bolton


I’ve been disabled for four years and three months. I’ve been thinking about things, assessing. I’m typing this up while I sip my tea.

These are some of the lessons I’ve learned:
1. I don’t always get the terms right. I said “sclerosis” instead of “scoliosis” for years.
2. Some people just don’t care, but they are so much easier to deal with than those who think you are full of it and faking.
3. I no longer care what people think. It’s very freeing.
4. I used to hide what I was going through so I wasn’t called a hypochondriac or undermined as being “ridiculous” or “exaggerating.” I tell everyone who will listen now. It doesn’t matter if people believe you. It matters that you believe yourself. You could also save a life.
5. Folding sheets in a wheelchair is an art form.

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