AIDS: What's Love Got to Do With It?

This article has been published in Colorado's award winning AIDS newsletter, Resolute!

It cannot be re-printed for publication in any other form without the permission of the author.

"I am not aware of any other factor in medicine -- not diet, not stress, not genetics, not drugs, not surgery -- that has a greater impact on our quality of life, incidence of illness, and premature death from all causes."

Dean Ornish, M.D.

Dr. Ornish has a new book: Love and Survival: The Scientific Basis for the Healing Power of Intimacy,which sites over one hundred studies that basically conclude that the absence of love shortens one's life. This is not a new idea. Some of the studies he refers to were started fifty years ago. A very similar book, which he sites in his bibliography, was written by James Lynch: The Broken Heart: The Medical Consequences of Loneliness,originally published in 1977. Lynch wrote at that time, "This book touches on complex themes that are in some ways as old as mankind itself, but its purpose is simple: to document the fact that reflected in our hearts there is a biological basis for our need to form loving human relationships. If we fail to fulfill that need, our health is in peril."

For the AIDS community this is not a new idea either. In fact, early in the epidemic there was quite an emphasis on the power of love. These ideas in the inspirational books and speeches of Bernie Siegel, M.D. spawned the annual conference from Boulder, AIDS, Medicine & Miracles, where Dr. Siegel has twice been the keynote speaker. In Dr. Siegel's first book, Love Medicine & Miracles published in 1986 he writes, "The fundamental problem most patients face is an inability to love themselves, having been unloved by others during some critical part of their lives."

And then there was the movement sparked by the work of Louise Hay, another past keynote speaker at the AIDS, Medicine & Miracles Conference. Ms. Hay, the author of You Can Heal Your Life & The AIDS Book: Creating a Positive Approach was the founder of Love & Healing Circles around the country (large drop-in support groups), including one here in Denver for several years, facilitated by Mary Ellen Freas, LCSW. Ms. Hay's message was consistent with that of Dr. Siegel: "AIDS to me is a dis-ease of love, the lack of love. AIDS shows us how incredibly un-loving we can be. Look at how we treat people with AIDS. They are often rejected, abandoned, isolated, and even denied the assistance they so sorely need."

As antivirals began to drastically change the mortality landscape there was a waning of emphasis on love as a curative factor. In addition, many became jaded with the knowledge that many who had died had done everything "right" -- and still died. Louise Hay's message had become distorted into the belief that immortality was possible by sufficient amounts of self-love and positive attitude. Many chastised themselves as they continued to get sicker. They felt they needed to meditate more, love more, and embrace their virus as a gift. Then came the backlash. "Its all airy-fairy bullshit!," I heard from my clients, and Louise Hay became history in the epidemic, her name now rarely mentioned.

I, too, put less credence in the importance of being loved and its connection to longevity. After all, I had seen many clients whose lovers had died, and they continue to survive, and yet I could discern little difference between them as far as social support or support for one another. Often in disbelief, the grieving partner wonders why he is still here. I think back to Jimmy whose hospital room was overflowing with friends and family, and a memorial service attended by hundreds. Why did he die with all this support; while others disowned by their family, and without a single confidant, still live?

So I decided to put the matter to my own personal test. I have had sixty-eight clients die of AIDS-related illnesses since the onset of the epidemic. I have clinical records on all but eight of these men so I reviewed a sample of sixty, and compared them with a group of fifty HIV+ clients who I know to be still living. I did not exclude the straight men from this sample, but they amounted to only 4%. There were no women included. The vast majority of these men in both groups were infected by sexual transmission in the late seventies, early eighties before there was much awareness of an epidemic, back in the days of rumors of a "gay cancer". The average age of these men is in their forties.

INDICATORS OF BEING LOVED

I asked three questions, and tried to narrow my definitions about the meaning of each question. First, are these men who would tell me they felt loved and supported by their families? In this case I was referring to their family of origin, ie. parents. As messy as the real world is, there is often no simple answer to this question. The answer was certainly clear in examples where parents never accepted their son's sexuality, or in the case of the mother who gave her son up for Lent. However, it is less clear when the father is coming over to mow the lawn and do errands. It can be clear to me that a parent may love their son, and yet be limited in their ability to demonstrate that fact, and consequentially, their son may not feel their love. I decided in the final analysis the individual's own perception was what mattered most.

Secondly, I made the assumption that men in a relationship with a romantic partner would be better supported than their single counterparts, so my second question was: "Are they in a relationship?" I did not put a time limit on the length of the relationship, but did not include the casual or temporary boyfriend.

In a study on happiness published in the Scientific American (May, 1996), researchers David Myers and Ed Diener found the happiest people were those who felt they were married to their best friend. The unhappiest with life were those who were in unhappy marriages, and the single people fell in the middle. For this reason I also asked, "Was one of their reasons for therapy couples conflict?" I believed they could be in a relationship, but its benefits could be outweighed by codependency, and other dysfunctional patterns.

I would have predicted that those PWA's in conflicted couple relationships were more likely to no longer be living. Ornish cites one study where the sense of being loved by a spouse quite dramatically influenced heart disease: In a Case Western Reserve University study of almost ten thousand married men a "no" to the question, "Does your wife show you her love?" lead to almost twice as much angina (chest pain) than for those who answered "yes". However, of my two groups there was only a 3% difference. Roughly one in four of each group initially came to see me for couples conflict, and this proved not to be a predictor of mortality. A relationship, even one in conflict, appears to be better than none at all.

The third question I asked was, "Are they isolated?"Those people I assessed as isolated did not have confidants, did not have people to help them other than professionals like home health care, and had few friends to call and suggest activities together.

RESULTS AMONG PWA'S

I expected there would be differences between the two groups, but what I actually found caught me by surprise in terms of just how much contrast there was. Among the men who have died, three-and-a-half times as many were isolated, one third of the total sample (35%) versus one in ten of the men who are still alive (10%). Those with partners and those without was not as great a difference, but still quite significant: 56% of the men still living have partners, compared to 35% of those men who have died. But the most dramatic difference occurred among those men with the support of their families: two-and-a-half times as many men who are still alive (72%) have their family's support compared to those who are no longer living (33%). Fully two-thirds of those who are dead did not perceive the love of their families, whereas the majority of those who are alive feel they have family support.

This study can only be construed as a clinical survey, rather than an objective scientific inquiry. There was room for interpretation of the data, and the definitions of the questions are quite subjective. In addition, this is a retrospective inquiry. I did not, for example, ask each of these men the specific question, "Do you feel your parents love you?" On the other hand, I did take a social history on all these men and asked questions from which I could deduce the answer to that specific question. In addition, this is a large sample of subjects. This should help offset the biases I might have brought to the process. And finally, I would have anticipated a different result. The data did not prove out my own hypothesis.

There is not an obvious causal character to this information. If you are single, isolated, and feel unloved by your family you may still be one of the fortunate few with an undetectable viral load. On the other hand, this study and the ones sited by Ornish, Lynch, Siegel, and Hay all point to a co-factor we should not ignore. Part of your over-all health regimen needs to include the cultivation of close friends, the healing of family conflicts, and an openness to romantic partnerships. As people are using protease inhibitors and living longer I have seen the mortality rate of my own caseload decline from an average of a dozen a year to one a year. Correspondingly, I have seen a waning interest in psychotherapy; as well as psychological and relational co-factors. However, the neglect of our primary relationships and too much faith on the magic pill (or 30 pills as the regimen may be) is a denial the healing power of social support.

Last messed with November 15, 2001