For years, Kim O’Neill felt ignored when she tried to talk to her doctors about her pain. One doctor told her she had a “mild” case of rheumatoid arthritis (RA) because she didn’t have the classic symptoms of redness and swelling – even though O’Neill could barely hold a pen to write.
“I used to be a real marshmallow when I would see a doctor,” says O’Neill, 67, whose symptoms began in her 30s. “They would say, ‘Do this,’ and I would say ‘OK.’”
O’Neill, an accountant, decided the conversations might improve if she had some medical knowledge, so she took extraordinary measures: She took classes in anatomy, physiology, chemistry, biology and even occupational therapy – and then told the doctor what she needed. It was a long journey, but O’Neill eventually found a rheumatologist who listened and was willing to partner with her. She had surgeries on her wrist and switched medications, and today she feels stronger than ever.
“To be able to feel empowered enough to take an active role in the way you’re treated is just amazing,” says O’Neill, a member of the patient advisory board for the University of North Carolina at Chapel Hill’s Thurston Arthritis Research Center.
But most people can’t go back to school just to learn how to talk to their doctor – and they shouldn’t have to. “Shared decision-m