Apr 21, 1998
I have written to you before regarding the fact that I have chosen not to go the "drug route" for treatment of my HIV. Because of this decision, I feel that the doctors (med school)have been very apathetic towards my health care. While I am asymptomatic, I still come up with some problems. I have had at least 7 primary care physicians since I was diagnosed. I went over 3 years without any blood tests. Not one doctor ever explained anything about balanced meals, vitamins, exercise....nothing. They were only interested in shoving those drugs down my throat. I have a new doctor who just ordered blood tests and x-rays. The results were not as bad as I thought they would be. The CD4 has remained the same for 4 years. I almost let this doctor convince me to start a cocktail. I just can't do it. All these side effects, mixtures, and all of the uncertainty. I've complained about fatigue, horrific constipation, enlarged prostate, and depression. I get zero response. "Just take the drugs". I'm worried that I will never get quality health care as long as I'm uncooperative about these drugs. If I become insistive, that could also turn them off. Got any suggestion?
Response from Mr. Shernoff
You raise an important point, which is really how to engage yourself in a healing relationship with a physician if the two of you have different philosophies about how to utilize contemporary American Medical care. I think this is such an important issue that I would also urge you to resubmit your question to The Body's treatment expert, Dr. Cal Cohen to get a physician's perspective and suggestions in addition to my own.
Self-empowerment for people living with HIV has to center around having a trusting relationship with a doctor with whom you feel respected and able to talk about any options, including not taking anti-retrovirals. It is crucial not to engage the MD in any kind of an adversarial relationship or one that does not respect his or her expertise. There have been times my doctor suggested I begin something, and after researching it, have told her that I was not comfortable doing that, at least at the present time. She always asked about my feelings and reasons for declining her suggestion. The important point here is that in our relationship she can respect that at times I may choose to disregard one or more of her suggestions, because after 15 years as her patient, she knows how much I respect her and value her opinions, even when I do not agree with all of them. In addition, I know that she values and respects the fact that I have become a non- medical expert on HIV/AIDS and often fax her articles about something new that I wish to discuss with her at our next visit. We are a team. She has a body of expertise and training that I respect and need in order to consult with her. Yet I ma the expert on my body and the idiosyncratic way that I respond to various treatments and doses. We have agreed to disagree at various times.
I think it is useful to ask yourself have you alienated the various doctors because you are not listening to them, or was it how you responded to suggestions they make that you do not feel comfortable following. I am not saying this is the case, but just that you might want to look at the possibility that you may have been disrespectful or hostile to them, and not known how to engage them in a relationship where they would be able to listen to your feelings about how to proceed. Doctors are people, often with very large egos, who have been trained to believe that they are the experts who know what is bet for their patients. Often they are right, yet it is still the patient's right to choose whether or not to follow what the doctor feels is the best way to do things. Sometimes this is an assault on a doctor's sense of professionalism, and needs to be communicated in a way that says: "I know you have my best interests at heart, and I value and respect what you say. How can we maintain our relationship and mutual respect and trust with the understanding that while I hear your suggestion I am just not in a place where I am ready to do that right now. I am not saying this will never change, but I need you to continue to work with me and respect me, even when what I choose to do is different than the treatment course you suggest."
I hope that this is helpful.
Michael Shernoff, MSW
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