Ehlers Danlos

‘There’s nothing we can do.’ I felt my hopes and dreams slip away. My life was falling apart and nobody could tell me why.’: Woman diagnosed with Ehlers-Danlos Syndrome, ‘I’ll never stop fighting’

“My body’s injustice and betrayal would send me fleeing to a quiet place where I wouldn’t be discovered by my kids. I’d hide in my closet, trying my hardest to muffle my crying. As the tears fell from my cheeks and were washed away, I’d wish they were carrying the sickness out of me.”

‘You’re imagining the sensation.’ My right hip snagged. My leg buckled beneath me. Pain shot into my thigh like electricity.’: Woman finally diagnosed with Ehlers-Danlos Syndrome, ‘They didn’t believe my pain’

“My doctor asked, ‘Are you having substance abuse issues?’ I was taken aback. I told her no. I was very hesitant to take any medications, much less for pain. ‘Leave a urine sample on the way out.’ She ran a full drug screen without telling me. It came back clean, but it didn’t matter. She didn’t believe me. She didn’t believe my pain. I was heartbroken.”

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