chronic organ failure

‘My daughter started bawling and wouldn’t let go of me. ‘All you do is sleep!’ My friends would say, ‘You’re a single mom. It’s normal to be tired.’ I knew something was wrong.’

‘It was happening at home, at work, at the grocery store. When I got home, I would give my daughter a snack and immediately go to sleep. Every time I got up to use the restroom, my heart rate would shoot up. I started teaching my 8-year-old how to call 911 if I couldn’t make it to the phone.”

‘I began purchasing baby formula for myself. ‘How could this have happened?’ I felt my boyfriend distancing himself out of fear.’: Young woman diagnosed with rare Elher’s Danlos Syndrome

“I was literally watching myself decay. I couldn’t stand up to get a glass of water without blacking out. I felt judgement in every public restroom I threw up in. My boyfriend of 3 years, the man I planned to marry, broke up with me. I was ‘too sick.’ It all happened so quickly. I went from helping children get off of feeding tubes, to needing one myself. I spent the majority of my hospital admission sobbing, grieving the life I’d walked away from.”

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