The Psychological Effects of HIV and Neuropathy

Neuropathy is only mentioned once in this article by the therapist Jim Weinstein, written for 4therapy.com (see link below) but if you substitute the word neuropathy for the letters HIV, you will be able to identify with many of the psychological effects described here. Of course if you're both HIV positive and have neuropathy, you can identify with much of this article on two counts. You may feel that you do well on one psychological reaction but know exactly what he's talking about in the next. It's easy for the patient to underestimate the effects HIV and neuropathy have on the psyche and much easier for the people around him or her. Time to recognise the non-physical effects of disease then because they can sometimes be just as damaging!

Ecstasy, Pain, Anxiety, and Shame--The Psychological Complexities of the HIV+ Man
Jim Weinstein, MBA, MFT

Therapists love to label, to categorize, and to diagnose. It’s a way to reduce the infinite variety of human experience into discreet segments that seem graspable, knowable, and (when necessary) even fixable. It is tempting to oversimplify a short article about the psychological effects of HIV. Yet the truth is that an essential part of understanding HIV’s emotional impact is to recognize that it is as complex as the disease itself.

Accordingly, I’ve decided to list a baker’s dozen of the major issues I’ve encountered in talking with hundreds of HIV positive men over the past decade. These are the variables that determine the unique, personal shape of the disease’s shadow on their lives. I believe that only through the process of understanding and honoring their individual circumstances can that shadow be lifted, and healing occur. In the interest of simplicity, I will be referring primarily to how HIV/AIDS impacts gay men, as they form the bulk of my clinical practice and are also the vast majority of the readers of this publication.

AGE: HIV’s psychological impact can be vastly different on a man in his 20s than on a man in his 40s. For a younger man, the diagnosis is generally much harder to take. Not only does it complicate the "my best years are ahead of me" thinking, but it can feel much more isolating. Older men often find some solace in the memory of friends and lovers who’ve suffered before them, a comfort seldom accessible to the younger guy, who may not know anyone who’s openly positive or who’s died of the disease.

ANXIETY: It’s hard to imagine a condition more anxiety provoking than HIV. In addition to the worries about declining health, bodily deterioration, and the possibility of premature death, there are anxiety-producing situations that someone who’s HIV positive may confront many times on a daily basis: Did I remember to take my pills? How far is the nearest toilet? Should I tell this guy that I’m positive? Not to mention longer-term worries: is my face looking gaunter? If I lose my job, what will I do about medical insurance? Should I worry about planning for retirement?

CAREER: Living with HIV can be devastating to one’s ability to pursue a career, particularly in a fast-paced or stressful field. As men, many of us are raised believing that our worth is measured by what we do for a living, and how successful we are at it. So when someone decides (or is told) that working sixty hours a week has to come to an end, he’s liable to react with despair. Even more common today is the reverse scenario: men who went out on disability or cashed in their life insurance five or ten years ago, counting on living out their last days in relative comfort and peace, only to be faced with the necessity of reentering the work force now that their HIV is under control. But how? How to bring rusty skills up-to-date? How to explain the employment hiatus? Finally, there’s the dilemma of feeling trapped in a job that is no longer fulfilling, but that can’t be left because the insurance benefits are so important.

CHANGE: The single greatest cause of psychological stress is change. In time, people can adapt to almost any circumstance (think of prisoners of war or concentration camp survivors), but the initial period of adjustment is always challenging. Many people with HIV struggle with what seems an almost unending series of changes, not only in their laboratory “markers” (i.e. viral load, T-cell count), or in the fade-in and out of symptoms such as neuropathy, but also in their ability to deal with the volatile side effects of medications – medications that also change as the virus mutates. The only constant in their health picture is their lifelong HIV infection: no cure is in sight, and so they face the eternal, irrevocable sentence: HIV POSITIVE.

COWARDICE: Starting a couple of years ago, the media began promulgating the notion that “the epidemic is over”. After all, thanks to protease inhibitors, death rates had fallen dramatically, hospital wards were empty, and the walking skeletons that used to populate the streets of West Hollywood, the Castro, and Greenwich Village had disappeared. The average American (straight and gay) stopped worrying so much about the AIDS epidemic, and the disease started assuming a more benign face. As a result, someone who’s HIV positive today can feel like a coward for worrying about his health and his life expectancy, particularly if he’s being reassured by friends, family, and maybe even his doctor that HIV is now not such a “big deal”. Yet HIV is a still a very serious and dangerous disease.

DENIAL: For some, the idea of being HIV+ is so frightening or abhorrent that they may act as if they never received a diagnosis. This denial can take various destructive forms: I’ve seen men who only occasionally “partied” with recreational substances suddenly develop a major addiction to smoking crystal. Men who heretofore sexually played safely turn to frequent acts of unsafe/unprotected sex. Or they may delay visiting a doctor until they’re so sick that they have to be hospitalized.

GOD: Living with HIV is at its core an existential dilemma: how to make meaning of an unexpected, unfair twist of fate. Those who can turn to a “higher power”, either through pre-existing belief or through cultivating a spiritual practice (e.g. yoga or meditation) generally fare much better in dealing with their condition than “non-believers”. A not insignificant number of HIV+ men credit their infection with ultimately re-directing their lives in a direction that has given them not only solace and meaning, but even glimpses of (non-pharmaceutical) ecstasy.

GRIEF: Someone who’s HIV positive generally goes into an extended state of mourning, and may experience the loss of many previously wonderful aspects of life: the exuberance of being gay and the celebration of one’s sexuality, the prospect of a future of good health, a general sense of optimism and even immortality. Finding a way to say “goodbye” to these aspects, while finding a place within to cherish their memories, is the key to emerging from the grief and re-engaging in life.

GUILT and SHAME: HIV can foster guilt in a way that a Jewish mother could only envy. “How could I have been so stupid – it’s not like I don’t know how it’s transmitted” is usually where this guilt starts, from which point it may well continue its unrelenting pursuit in various guises. If someone is feeling depressed, yet is relatively healthy, he might be ashamed to voice his feelings: “I shouldn’t complain, after all, so many people are worse off than I am.” If someone has remained relatively healthy for many years, he may feel guilty for having outlived all of those who succumbed earlier. And there’s the question of when, and if, to come out of the HIV closet to family, friends, potential sexual partners and/or casual dates. Unfortunately, but understandably, there will often be a reluctance to turn to friends and family for support, which is the one thing most needed to help heal the psychic pain.

INTERNALIZED HOMOPHOBIA: Having grown up in a society which condemns and even abhors homosexuality (“faggot” is still an acceptable put-down in school), we all carry with us a degree of self-hatred for our attraction to other men. And, in some of us, this self-hatred can be immense (particularly if raised in a fire-and-brimstone Fundamentalist environment, be that Seventh Day Adventist, Southern Baptist, Roman Catholic or Orthodox Jewish). Becoming infected with HIV can re-trigger this self-hatred, magnifying all of those feelings of self-loathing, since it’s hard to avoid the conclusion that “if I hadn’t acted on my sexual impulses I wouldn’t have become infected.”

LOSS OF CONTROL: Most of us labor under the delusion that we’re in control of our life circumstances, a delusion that can be maintained as long as nothing catastrophic occurs. HIV is, to many, that very catastrophe. Suddenly it seems like an alien agent (the HIV virus) is in charge of their lives. The totally powerless feeling that results has been described to me as “like being a passenger in a car on the 405 whose driver just had a heart attack”.

MEDICAL ADVANCES: Ironically, while someone who’s positive is medically much better off today than in the 1980s, it may have actually been easier for some people infected then to deal with the psychological impact of living with HIV. At that time, HIV was almost assuredly a death sentence, and those who were positive were viewed, at least by many in our community, as martyrs or heroes, “diseased” though they might be. That was a context in which fear and suffering could be endured. Today, people who are HIV positive are no longer martyrs or heroes, but they remain “diseased”. And medical advances have enabled many of those infected to look healthy, or even better than before (thanks to testosterone therapy) – even when they’re not feeling that way. So sympathy is harder to come by.

SELF-ESTEEM: “I feel like tainted goods” is a phrase that I hear over and over again when working with HIV+ men. And is it any wonder? In an effort to secure the research and funding attention that was so necessary in the 1980s, AIDS activists promulgated the concept of the disease as a plague. Yet the very success of that effort has left in its wake a tremendous psychological casualty: the already fragile self-esteem of so many gay men has become even further eroded as they discover that they’re liable to be shunned by their peers. Perhaps this facet of living with HIV is best summed up by the short sentence featured in so many Internet profiles and personal ads: “I’m healthy – UB2”. Perhaps an HIV+ guy will never fully fit that bill. But a balanced quest for physical, emotional, and spiritual health can help create a life very much worth living.

"When we say that pleasure is the end, we do not mean the pleasure …of physical enjoyment…(W)e mean the state wherein the body is free from pain and the mind from anxiety." Epicurus (c. 341–271 B.C.), Greek philosopher. letter, Menoeceus 131b, Epicurus Letters, Principal Doctrines, and Vatican Sayings, trans. by Russel M. Geer, Bobbs-Merrill Co. (1964).

About Jim Weinstein...

Jim Weinstein, MBA, MFT, is a life consultant and therapist based in Washington, D.C., with a secondary practice in Beverly Hills, CA, specializing in career counseling, mid-life issues, spiritual counseling, gay and lesbian issues, and more.

http://www.4therapy.com/life-topics/chronic-pain/ecstasy-pain-anxiety-and-shame-psychological-complexities-hiv-man-2415