POTS

‘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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