EDS

‘Can you step into my office?’ Anticipating an assignment, my research advisor abruptly stated, ‘You know you’re disabled, right?’: Woman diagnosed with Ehlers-Danlos Syndrome, POTS discovers identity after lifelong battle with chronic illness

“After months of appointments and ER visits, doctors told me I was ‘just anxious.’ I spent my final year of college nearly bedbound, fully walker-bound. All the activities I built my life around — marching band, the gym, work, parties — fell suddenly away. With that one question, she saved my life.”

‘I’m allergic to WATER. People call me a ‘faker.’ I should’ve seen this coming. But I’m so GRATEFUL.’: Woman with EDS, POTS, and aquagenic urticaria says ‘I want to raise awareness’

“I remember being in a lot of pain and visiting the first aid room at school and being sent away, as it was most likely ‘growing pains.’ I have to accept I can’t get a role as physical as I’d like, but this is part of having a disability, learning what you can and can’t do.”

‘The doctor said, ‘Something is brewing, but I just can’t put my finger on it.’ I went from a ‘migraine’ to blacking out for two months.’: Teen battling chronic illness urges ‘let the worst inspire the good’

“I spiked a 108-degree fever. I was stripped naked, covered with cold cloths, and had fans blasting my body. Soon after, I went psychotic. Nothing I said made sense, and everything had a twisted meaning. HGTV sent me into full-blown panic.”

‘Sedated and wearing diapers, I flew 3,000 miles during a global pandemic to have a life-saving surgery.’: After 23 years of not being taken seriously, woman finally diagnosed with 3 rare diseases

“The world was falling apart as a top neurosurgeon prepared to piece me back together. I watched the protests from a small TV in our hotel room and reflected on how I fought for 23 years to be heard by men and women in white coats who minimized my disabling symptoms and refused to acknowledge my struggle was real.”

‘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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