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Face It: Lipodystrophy, Lipoatrophy, and Self-Esteem

In the earliest years of the HIV/AIDS epidemic, many people were distressed by the appearance of nickel-sized purple lesions on their bodies and faces that were a visible sign of living with Kaposi’s Sarcoma, an AIDS-related opportunistic infection. The lesions involuntarily “outed” them as having the highly stigmatized disease of AIDS. Society’s reaction to patients with these visible symptoms often caused additional psychological distress to people who were already fighting a host of medical challenges in the days with almost no treatment options.

Today, people living with HIV very often are fighting a similar distress caused by reactions to other visible signs of living with HIV, such as lipoatrophy, a syndrome where a person involuntarily loses (“atrophy”) the fat (“lipo”) in the soft tissues of the face, arms, legs, and torso. Another is lipodystrophy, which is the abnormal processing (“dystrophy”) of lipids (fat) by the body, causing accumulation of fat behind the neck (the dorsal fat pad, or “buffalo hump”), in the belly area around the vital organs, in the breasts (in women), or other unusual places. These syndromes are believed to be related to HIV medications but can occur also in people with HIV who are not on medication. The purple lesions of yesterday have been replaced by the hollow cheeks, depressed temples, pronounced cheekbones, and sagging “tushes” of today.

As a psychotherapist and a person living with HIV, I think there hasn’t been enough open discussion of what these visible symptoms mean emotionally. In gay male culture, where there is already an extreme emphasis on youth and muscle, these syndromes can hurt someone’s self-esteem. Women with these syndromes face an additional challenge to the sexist societal pressures already put on women to look a certain way. Also, issues of social class and the two-tiered system of American medical care apply: if you can access it, you can have a variety of cosmetic treatments (some very effective, some not, and all expensive) to fill out your face or butt again with synthetic polymers to replace lost fat, or to remove your buffalo hump through a procedure similar to liposuction. But if you can’t access that, you go without, because no private health insurance company nor public health care program (such as Medicare/Medicaid) currently covers these procedures, despite lipodystrophy being a serious HIV-related syndrome that impacts not only appearance and mental health, but in some cases physical functioning as well (such as uncomfortable mobility, sitting or lying down).

Back in the days of rampant KS, however, patients discovered a powerful new mental approach to restore their self-esteem. Rather than resign themselves to a depressive helplessness, those patients with the purple spots did what they could. There were practical cover-up concealer products that were basically heavy makeup, but there was also “perspective change” about their self-perception. If the spots weren’t going to change, their interpretations of society’s attitudes would have to. Courageous patients with no other options steeled their nerve and said to the world, “this is me, lesions and all, deal with it” and went on going out in public and living (albeit for other AIDS symptoms) as normally as possible, knowing that their skin was only one outward facet of their very complex and wonderful persona. A person in that situation didn’t let it turn him into a recluse. Instead, many confronted the “norm” and rejected the notion that one must look perfect to be considered valuable to the world.

The same holds true for people with lipoatrophy and lipodystrophy today. For that matter, it also applies to people who use a wheelchair, hearing aids, a white cane, or have an ear missing. These “deficits” are not deficits in character and do not warrant wearing a mantle of shame; on the contrary, the shame should be on those who make inappropriate comments/jokes, or practice discrimination against them. At the risk of invoking cliché, beauty is only skin deep. If you are feeling low self-esteem due to these conditions, think about how you act them out. Do you deny yourself being out in public? Do you shy away from events or people who would normally be a part of your life? Try thinking about one positive aspect of yourself, and writing down a different one every day. Try journaling at the end of each day all that you accomplished – even if it’s just living through it. Look in the mirror and say positive things about yourself, even if you don’t, at first, believe them. Notice your self-talk and eliminate the negative statements. Develop and take care of other aspects of your appearance such as your hair, skin, clothing, and overall fitness. No one looks good all the time, and most people do not define themselves by their looks. One supermodel is thought to have said, “Even I wish I looked like me when I first get up in the morning”!

Many people, gay and straight, have suffered from “official” appearance-related psychiatric disorders, such as anorexia, bulimia, body dysmorphic disorder, or obsessions-compulsions that affect appearance. In many cases, one component of their mental health treatment looks at the underlying self-esteem issues that drive the disorder and, when addressed and improved, become the core of their recovery. Sure, advocacy to get health insurance companies to pay for facial wasting treatment and other procedures (and to understand that these procedures are not “merely” cosmetic), has its place, but so does a courageous personal re-examination of our own outlook on society’s values – and, where necessary, defiantly challenging them. In the words of proud drag queen Albin in the classic stage musical, “La Cage Aux Folles” (Jerry Herman), “I am what I am, and what I am, needs no excuses.”

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