Physician doubts original diagnosis

Question:
I was diagnosed three years ago with a serious rheumatic illness. The rheumatologist wanted to put me in a clinical trail for a new medication. With symptoms increasing, I had learned about the option of antibiotic therapy for my disease. When the local rheumatologist refused to prescribe minocycline, I found another doctor, 200 miles away. A year later, at about the same time the new drug failed its trial, I was starting to get better on minocycline. My family doctor (who referred me to the first rheumatologist) has seen my symptoms disappear over the past three years. But instead of sharing my delight, he now says he doubts the original diagnosis. I feel as though he is trying to rob me of a life experience I know to be true, and I am very resentful - which is not good for my health. Do you have any advice for dealing with those feelings?

Response:
This question raises many important issues that confront patients coping with a chronic illness, whether they are using a traditional or cutting-edge approach to treatment. And these issues likely stem from a basic conflict between a belief in the omnipotence or "all-knowingness" frequently attributed to physicians and the more recent trend toward patient empowerment and advocacy in managing care. When you mention that "he doesn't share my delight," referring to your doctor's rejection of antibiotics as an effective approach to rheumatic disease, it suggests to me that your physician's opinion is very important to you and that you want him to validate your treatment decision, an attitude that illustrates the dilemma that patients must often confront in these changing times. In fact, research has investigated health care decision-making styles and the contribution of patients and professionals to them.

Dr. Kenneth Wallston, a researcher in health psychology, has developed a scale which measures what psychologists call, "health locus of control." Health locus of control evaluates whether your style is to take responsibility for your health; give this job to powerful others (such as doctors or people you consider more competent); or leave health issues and care to chance or fate (i.e. "What will be, will be.") From your letter, I sense a conflict between your movement toward autonomy and making decisions that you feel are appropriate for treating your rheumatic difficulties, and your adherence to a belief the powerful others (i.e. all doctors) know best. I would like to suggest that your resentment may come from a need for your primary care physician to validate your treatment success, because, like many people, you might still need a seal of approval from professionals.

I also sense that there is a more personal aspect to this need for him to share your joy in your progress. Perhaps you have a long-standing relationship with your physician, and expect him, like you would any "friend," to admit that he was "wrong" and that your decision was the right one for you. And having selected a relatively new, still controversial approach to treatment, you may also need his support to feel fully comfortable with your decision and your progress. I don't know your gender from your letter, but, women typically seek consensus when making decisions, and also have a stronger desire to please significant others. If you are female, these needs can also be fueling your uncomfortable feelings. Certainly, regardless of gender, if this physician has cared for you through health problems in the past, the connection between the two of you is probably strong, and his lack of enthusiasm for your progress may understandably feel like a betrayal.

You want to know what to do about these feelings. First, understand them. Consider some of the possibilities discussed, and see if they hit home for you. If they do, then you can develop some methods to counteract any angry or negative thoughts, to help you view your doctor's lack of enthusiasm for your recovery more realistically and objectively. If you find that you are someone who respects the opinions of "powerful others" more than your own beliefs, do some work on your self-esteem! Look for the evidence that you are competent, intelligent, and capable, and begin the rewarding work of developing respect for yourself. If this task is difficult, ask friends to help you find examples of your abilities and assets.

Another helpful trick is to try to take the perspective of others. Imagine your physician out of his office and out of his white coat or suit jacket. Think of him now as "just another person," and one who, perhaps, doesn't like to be wrong. One way he can cope with his discomfort is to make the original rheumatologist and you wrong. Wrong diagnosis, wrong treatment, and poof! He's not only right, but he's still a good doctor as well. This kind of thinking screams insecurity. Don't let yourself fall victim to your physician's lack of confidence.

And please don't look outside yourself for validation. You know you're doing better, and while it may be unfortunate that your long-time physician can't share your joy, work on sustaining your own pleasure in your recovery. Focus on those friends, family members, and health care professionals who support and endorse your decisions. And if you find your thoughts turning toward those who don't believe in you, let them go, replacing these thoughts with more positive thoughts about your ability to take charge of your health care and your journey toward wellness. When you're coping with a chronic illness, always make decisions that validate your own beliefs about what road to follow. You'll find many fellow travelers on the Road Back web site to cheer your success!

Dr. Susan E. Grober, psychologist