EDSers Need to Speak Up to Doctors

Many Patients with EDS are struggling with finding medical practitioners who will take the time to understand their condition. This article urges you to be assertive and be an advocate for yourself.

USA Weekend article:

Illustrations – Luis Alvarez/Getty Images
Written by Cheryl Alkon

“About 100,000 people die each year due to medical errors, largely from misdiagnoses, says Leana Wen, co-author of When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests, a clinical fellow at Harvard Medical School and an ER physician. “It’s critical,” she says, “for patients to advocate for themselves.” Her tips on how to do that:

Partner. “So many patients are used to a parent-child relationship, but you want to be an equal partner,” Wen says. Speak up if you don’t understand what the doctor is telling you, and be sure all your questions are answered clearly. Also, Wen says, “it’s up to you to tell the doctor what you are feeling and for the doctor to turn those symptoms into a diagnosis.”

Practice. The average doctor interrupts patients in 10 seconds, says Wen. So practice telling your situation in that time. Tell a beginning, middle and end, and don’t jump around. Use context to clarify: “The pain was so bad that I couldn’t get out of bed in the morning and I couldn’t go to work.”

Insist. “The most common form of diagnosis is no diagnosis at all,” says Wen. Challenge your doctors to come up with something. “Say, ‘I just want to know what you are thinking; what is the most likely diagnosis?’ Or, ‘What are two or three things you think this is?’”

Trust instinct. Most important, Wen says, “you know your body better than anyone.”