My patients and I — our own support group

August 5, 2005

The author had the same disease as some of her patients. Should she tell them?

Maybe you're a physician who's comfortable talking about your personal life with your patients. As you establish rapport with them, things just pop up in the course of conversation. Before long they know that your son just turned 13, your spouse teaches French, and Ben and Jerry are the names of your pet collies.

Or maybe you're just the opposite. You believe your personal life is private, and choose not to open up to your patients. Perhaps you refrain from talking about yourself so you don't deflect the focus from your patient.

But whether you're open or reserved, you probably feel that bringing up your own health problems during a patient visit goes well beyond what's prudent. But is there ever a time when revealing a personal medical experience might be the right thing to do? If it would help to comfort, educate, or show empathy with a patient, would you be willing to share your own personal medical information with him?

And I'm even quite comfortable using myself as an example when the subject is a fairly routine procedure. How could a colposcopy be all that bad, I'd reassure my frightened patients, if I too had gone through it without difficulty?

But then, two years ago, my status as a healthy 30-something physician with garden-variety medical concerns changed unexpectedly. I was diagnosed with rheumatoid arthritis. What had previously been to me just another disease on a patient's problem list-basically the concern of the rheumatologist-became a life-changing experience that impacted me and my family in ways I had never imagined.

In time, I learned to cope with this chronic illness. Then, whenever I saw a patient with a newly diagnosed RA or one who was having a particularly hard time controlling her symptoms, I wondered whether I should share my own personal journey. But opening up on this subject was far more personal than talking about my colposcopy or a disease of another family member.

Mary Harrison (not her real name) was the first person I decided to share my story with. Mary was distraught because she couldn't find the right medication to control her RA symptoms. She had tried methotrexate, Arava, and other treatments without success. Soon she was going to become a grandmother for the first time, and she desperately wanted to feel well enough to take care of her new grandchild.

Finally, her rheumatologist had proposed Remicade. But Mary was very afraid of trying the drug because of the Black Box Warning about the risk of death from infection, secondary to the immunocompromised state Remicade induces. Now, I had had great success controlling my RA symptoms with Remicade. I knew my experience would reassure her, but for that very reason, I hesitated to bring it up, fearing that I might unduly influence her decision. Finally, I took the plunge, and entrusted her with my story.

I did my best to present the factual pros and cons of the treatment, while including both the good and bad sides of my own experience. And I found that not only did I manage to help Mary resolve her dilemma, but I was able to provide her with the sense of security she longed for. I learned that a doctor's personal experience can comfort a patient in ways that are very different from the support anyone else can offer.