Doctor, Doctor: Changing Caregivers is Like Getting a Divorce
This article originally appeared in A&U Magazine.
What do you mean, you’re retiring at the end of the year?! You can’t do that! We’ve been together for twenty years! You can’t just walk out on me like that!
When you’re a long-term HIV/AIDS survivor and have been relying on the same healthcare provider for quite some time, changing doctors can be problematic, both physically and emotionally. It’s like losing a boxing coach.
I have been with the same large HMO here in San Francisco since 1992. Doctor “C” has been my primary caregiver for most of that time. I first saw him in 1998. The doctor I had been seeing from 1992 through 1998 left the HMO and went to Sacramento to work for the VA. I was sad to see him go—in addition to being a wise, compassionate general practitioner, he was also one of the HMO’s leading HIV/AIDS doctors, the one who talked me into taking the cocktail of medications starting in 1996. His departure was quite a loss for the HMO—and for me. Before his departure, he recommended Dr. C to me, assuring me that “Dr. C knows as much about treating HIV/AIDS as I know,” and that was indeed reassuring.
In the years since, Dr. C and I have been through a lot together in addition to my HIV-related care, although everything is HIV-related for me these days. We’ve fought long and hard together—pneumonia, shingles, ringworm, influenza, pink eye, arthritis, osteoporosis, COPD, emphysema, asthma, herniated discs and compression fractures in my spine, cancer of the appendix, my loss of muscle mass, and a sprained pelvis, just for starters! Dr. C has been there in my corner throughout all of those fights.
Of course, I haven’t always been happy with some of Dr. C’s diagnoses and treatments. For instance, a few years ago, he maintained that the excruciating pain in my back that went on for months and got worse month after month was just a muscle spasm. The MRI that I insisted on revealed that “muscle spasm” to be three compression fractures in the middle of my spine. He also missed the cancer of the appendix that was revealed, again, only because I insisted on more extensive testing when my belly ballooned up to three times its normal size. So Dr. C hasn’t been perfect, by a long shot, but I’ve stuck with him for two decades now.
The last time I saw him, Dr. C advised me that he was retiring at the end of 2018. And I know I’m going to miss him.
Who’s going to take care of me now? Who else knows everything we’ve been through? Will I have to start all over training a new doctor?
Dr. C assured me that he would recommend for me another physician at the HMO who is as knowledgeable about HIV treatment as he is. I haven’t met the guy yet, though. I know only that it will indeed be a male doctor—looking through the roster of physicians on the HMO’s website reveals that all of the HMO’s specialists in HIV/AIDS are male doctors. And they all look younger than the virus in my blood.
So what do I want from this new doctor?
I want a doctor who knows at least as much as I know about current treatment options and the prospects for a cure.
I want a doctor who understands that since I have had the HIV virus coursing through my blood for thirty years now, everything wrong with me is HIV-related and must be seen through that lens.
I want a doctor who understands the problems inherent in aging, and especially the problems of aging with HIV.
I want a doctor who understands that “U=U” is not just an aspirational slogan.
I want a doctor who already comprehends the word “constant,” as in, “I am in constant pain” (a word I had to teach Dr. C).
I want a doctor who isn’t dismissive of alternative treatments such as acupuncture and therapeutic massage.
Mostly, I want a doctor who will listen to me; a doctor who will acknowledge that maybe I’ve learned something about this virus in the thirty years I’ve carried it; a doctor who will actually take the time to talk with me.
A doctor like Dr. C.
When Dr. C first told me that he is retiring at the end of the year, I had no idea that it would affect me emotionally. But I have to admit, it saddens me to change doctors. It feels like getting divorced—at the other person’s instigation; it feels almost like being abandoned or, at the very least, like losing a good friend, something I will never get used to. But we’ve all had to change doctors from time to time and I know I’ll get over this.
I just wonder, who is this young whippersnapper whom I have to train in the proper care of a 66-year-old HIV-positive curmudgeon?
The opinions expressed in this article are those of the author and do not necessarily reflect those of the Diverse Elders Coalition.