"Ehlers-Danlos syndrome patients take an average of 10 years to be diagnosed.

In that time, the pain from microtrauma and joint instability can become unbearable. “Just exercising more” can backfire, causing injury and disability and creating a cycle of added stress from chronic illness. But the biggest challenge is when our physicians are our opposition. It’s been more than 20 years since the first time I tried to convince a doctor to believe me. I was just a child, and the trauma of repeated dismissal still haunts me at every new appointment.

Thankfully, I am a physician myself now, and I am no longer powerless. I can advocate for myself AND my patients in ways most people cannot. I can navigate the system and find specialists independently. But I shouldn’t have to, and neither should our patients.

And none of us should fear what our doctors say about us when they leave the room."

Sarah Cohen Solomon and Linda Bluestein are physicians.

They share their stories and discuss the KevinMD article, "What a lifetime of gaslighting by other doctors feels like."

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