About Lupus

Good Patient

Earlier this year the New York Times published an article called Living with Cancer: The Good Patient Syndrome, which we read together and discussed in one of our lupus support groups. In the article, the author Susan Gubar described the “Good Patient” as someone who feels that she always has to present herself to the doctor as cheerful, never questioning mistakes or complaining about how she feels. The “Good Patient” is also not supposed to act sick or “whine” about how she is feeling, but is supposed to seem interesting and charming. The “Good Patient” must make herself stand out from the rest to ensure that the doctor finds her unforgettable. What the “Good Patient” ultimately fears is that if she advocates for herself, or is honest about how she feels, she will be viewed as difficult or negative, and as someone that her doctor ultimately does not want to help. The “Good Patient” fears she will not get the quality of care that she needs, and that she could get hurt by her doctor in some way:

“Were I to seem boring or easily forgotten, should I appear crabby or disagreeable, I might get neglected or, in my anxious imagination, harmed. Not consciously neglected or intentionally harmed, of course, because doctors and nurses have dedicated themselves to helping people whose sickness often makes them boring and disagreeable. But neglected or harmed nonetheless.”

Susan Gubar, Writer and Ovarian Cancer Survivor

What Susan discovered is that being the “Good Patient” is a flawed solution. She became sicker due to medical mistakes she had not brought up to her doctor. Luckily, my support group members have mostly positive experiences with their doctors, but doctors are humans too, and mistakes can happen. One of the most important lessons my proactive, veteran group members have taught others is the importance of being your own best advocate. There is no one as motivated about your medical care as you are.

What it comes down to is communication.

In order to advocate for yourself, you need to know the best way to communicate with your doctor.

This is an important topic, and one that we’ve addressed in the past, so the resources are there for you to learn more about how to master this skill:

Earlier this year, blogger and author, Sara Gorman did a webinar presentation for us, called Living Well, Despite Lupus: Listen Up, Doc! , where she helps people get the most out of their doctor’s appointments because effective appointments equal effective treatment. She explores reasons why we have trouble advocating for ourselves and offers solutions. 

One of the tips that I find myself repeating often is to write things down. You have to go to your appointment prepared because you wouldn’t possibly be able to remember everything that’s on your mind between appointments, especially since many people do not see their rheumatologists for three months at a time. Some patients suggest keeping a small notebook in your purse or pocket, with a pen. Another idea - keep a piece of paper on your refrigerator and whenever you remember something to bring up to your doctor, you write it down there.  You might text yourself your thoughts and organize them later. There are many ways to go about it. But the goal is to have a list of questions and symptoms for your doctor at your next appointment so that you can communicate in a clear and organized way, making the most out of brief appointments.

There are several helpful tools available online to help prepare for a doctor’s visit. For instance, a federal program, the Lupus Initiative, provides a free, downloadable symptom tracker, which is available in both English and Spanish. And a while back I wrote a column about communicating with your doctor that also offers solutions on effective communication methods.

Your doctor’s job is to help you. And your job is to be your best advocate.

“Your job is to do everything in your power to help your doctor help you”
-- Sefra Kobrin Pitzele, We Are Not Alone: Learning to Live with Chronic Illness