Since triple-drug combinations began to be used to treat HIV in 1996, lipodystrophy -- including body-shape changes -- has emerged as a new and increasing challenge in the HIV epidemic. Body-shape changes can have a substantial impact on quality of life, and the significance of changes to the face is a profound one in our culture. Together, they can cause anxiety about appearance and raise new concerns about stigma and confidentiality. They can also lead to medication adherence problems and may undermine adaptive denial and confidence in health.
I go through the standard questions a psychiatrist must ask. Is he depressed? Only about his face. Is he anxious? Only when he feels the men of Manhattan are staring at him. Is he eating disordered? Is there overall disconnection between his self-perception of his body, or body image, and his actual physical weight? There isn't. He goes to the gym a great deal and is meticulous about his diet. He wants a boyfriend. I explain that I think he's having an emotional reaction to his HIV diagnosis, that no one can see that his face is thin, that to my eye, at least, it isn't wasted or changed. He leaves my office puzzled, with sleeping pills to take as needed. He doesn't return to the clinic for further psychiatric consultation, but comes back for HIV medical care and social work follow-up.
Several years later, I interview a patient in the clinic who has severe lipodystrophy. He refers to his "watermelon belly," and his face looks drawn, cheeks hollow, eyes made prominent by the loss of fat around his temples and forehead. The changes impose an artificial aging; he looks old and wise, like a philosopher. His humor catches me off guard. I ask him how he's doing with his face and body changes and he laughs. "Are you kidding me? Like I care that much? All my friends are dead, and I almost died, and now here I am, alive and well. Who the hell cares what I look like? I've been through everything, lost my lover, nearly dead myself, and here I am. I have a partner and a dog, and I only wish I could work, but I'd lose my benefits." I'm incredulous and share his laughter. He's here because he doesn't want to switch his lipodystrophy-causing medication. He doesn't want a new regimen that might give him diarrhea, and his internist has sent him to me because he refuses to change the medication that has saved his life, though not spared his face and body.
We discuss the issue. I learn that he is despondent at times but not depressed and offer anxiety medication for his bouts with the intense self-consciousness he feels when going out into large groups of people. I tell him that he's making his doctors nervous; doctors feel guilty and stressed about causing people disfiguring side effects if they can avoid it. He leaves and continues the debate with his doctor until he learns that he will have to take pills to lower his cholesterol. Then he agrees to switch regimens, mostly out of concern of getting a heart attack due to his high cholesterol and the thought of having to take yet more pills to counter the side effects of his HIV regimen.
I remember my friend who died in 1994, not long after World AIDS Day. He lay in the ICU, dying of PCP, all of us gathered round, sobbing, playing him his favorite music, a nurse washing his hair, friends bringing flowers and chocolates he would never eat because he was intubated. We managed to stick chocolate pudding in his nasogastric tube, but he said he could smell it more than taste it, which was funny at the time. He noticed that he had one gray hair -- at the age of 29. This was something new for him. "I am the only gay man in the city who wants to grow old. I want to have a whole head of gray elegant hair, like my father has!" he exclaimed. He died in his mother's arms, one gray hair, one beautiful face, ethereal and passionate, and, in our minds, young forever. His death was like the one that Thom Gunn described in his poem, "Lament," included in his 1992 book, The Man with Night Sweats:
... Nothing remained
But death by drowning on an inland sea
Of your own fluids ...
I share this anecdote about the wish to grow old to give perspective; HIV no longer means imminent death, but living with HIV is hard, and many people suffer with disfigurement caused by HIV treatment. Is this a psychiatric problem per se?
Some people become despondent or clinically depressed because of changes in their appearance, and standard psychiatric and social treatments for anxiety and depression can be quite helpful. Lipodystrophy, however, is as much about the eye of the beholder as it is about the face of the sufferer. Like no other aspect of the epidemic except Kaposi's sarcoma and wasting syndrome, the outward manifestations of lipodystrophy depend upon an onlooker to judge its severity and to perpetuate stigma and shame. It may be more helpful to examine our overvaluation of physical appearance rather than to delve further into the miseries of people faced with the challenge of coping with an altered appearance.
Psychosocial literature on lipodystrophy is sparse, although certain themes are relatively consistent even within this inadequate body of data -- changes in body image, self-esteem, social and sexual relations, disclosure issues, locus of control (the sense that a person feels in control of events rather than controlled by them), demoralization and depression, doctor-patient relations, adherence, and economic impact.
A study of 150 patients at a clinic in Spain published in the Journal of AIDS in 2002 found that lipodystrophy alone did not influence their overall quality of life. On the other hand, the study concluded that homosexual patients were more vulnerable to the psychological impact of lipodystrophy on quality of life than heterosexual patients. Having lipodystrophy and being unemployed also affected quality-of-life measures. Furthermore, taking psychiatric medications, mainly benzodiazepines or antidepressants, or methadone for opiate addiction was associated with a greater impact of lipodystrophy on quality of life. The study authors were uncertain whether study participants were anxious and depressed as a result of having lipodystrophy or if having a psychiatric illness or being on methadone was the primary cause of a decreased quality of life.
Some studies have shown that lipodystrophy has an impact on sexuality as a dimension of quality of life. In one such study conducted in the Netherlands and reported in the journal AIDS in 2001, men with lipodystrophy reported a severe decrease in sexual activity, enjoyed sex less than they had before, and were less confident in relationships. Since reduced sexual activity was also reported by men without lipodystrophy, though to a lesser extent, the study authors couldn't determine whether the sexual dysfunction was caused by feeling less attractive because of lipodystrophy or due to a decrease in sexual libido caused by protease inhibitors.
A small survey of 33 HIV-positive individuals (14 heterosexual women and 19 gay men) with self-assessed body changes related to HIV medications was conducted in 2000. Several respondents said that their partners no longer found them attractive. Many of the women reported that their husbands had become less interested in them sexually after they developed lipodystrophy. A woman whose husband was HIV-negative said, "He now refuses to have sex with me -- only as my body changed has the HIV become an issue in our love lives. Now, he is afraid of catching HIV. Perhaps he was in denial before." A gay man said, "My lover left me because, as he has no lipodystrophy and no [detectable] viral load, my face was a constant reminder of the HIV he allowed himself to ignore." The lipodystrophy had apparently broken through the denial about HIV that these peoples' partners had maintained.
A German assessment of 313 patient questionnaires published in AIDS Patient Care and STDs in 2002 concluded that lipodystrophy didn't seem to affect patients' general attitude toward the quality of their health condition and well-being; however, patients with lipodystrophy were twice as likely to feel recognizable as HIV-positive due to their physical appearance. Lipodystrophy -- particularly fat loss in the face -- was associated with increased perceptions of stigma and social disadvantages by the respondents.
It's probably impossible to measure the social impact of lipodystrophy by questioning the person who has the syndrome. The characteristic changes of the face can mean immediate disclosure of HIV status for some patients, complete loss of confidentiality of both HIV status and sexual orientation, and loss of income for people who aren't able to work or whose livelihood is based on appearance and image. It's unclear whether younger people, usually more concerned with appearance and attractiveness, might be more affected by lipodystrophy than older ones, who can focus more on external achievements and accomplishments. Overall, mild facial lipodystrophy appears to be less an issue in the straight than in the gay community.
Functionally, lipodystrophy may change how people deal with HIV. Feeling demoralized about facial changes could lead to poor medication adherence, possibly leading to drug resistance and even illness and death. The importance of this actual or feared lipodystrophy must not be overlooked; the doctor-patient relationship may be undermined if patients feel that their medical providers don't empathize or understand the impact that lipodystrophy can have, further threatening adherence to regular medical monitoring.
For people living with HIV, the meaning of illness has many contributing factors. In his 2001 social work thesis, Lipodystrophy and Body Image in Gay Men with HIV/AIDS: Some Key Psychosocial Issues, Jesus Martinez, CSW, notes that lipodystrophy emerged at a time when many HIV-positive men were experiencing a Lazarus-like syndrome, new hope regarding their health, and a turning away from death. He says that lipodystrophy could eradicate the hopefulness of the Lazarus syndrome, writing that "a new crisis arises that may precipitate grief-mourning processes rooted in the loss of the 'appearance of health.'"
Martinez notes that the experience of HIV can feel like an assault to one's identity -- HIV can feel like a death of the former sense of self. People with lipodystrophy may lose the "image" of their former selves and the way they interacted with the world. Now they are confronted with an altered image, a challenge to their self-assumptions about their influence and instrumentality. He writes that nonprogressors (people who have been living with HIV for a long time without any symptoms) have to live with the constant threat that their health status may change and the corresponding anxiety that brings; in this context, lipodystrophy raises the possibility that sustained health may not hold.
In her 2002 essay, Gay and Lesbian Body Images, included in Body Image: A Handbook of Theory, Research, and Clinical Practice, Esther D. Rothblum notes that it has been hypothesized that people sexually involved with men (heterosexual women and gay men) are more focused on appearance than are people sexually involved with women (heterosexual men and lesbians). The result is an interaction of gender and sexual orientation on body image concerns.
Rothblum refers to a study conducted at Yale that was published in Psychosomatic Medicine in 1989. According to Men and their Bodies: A Comparison of Homosexual and Heterosexual Men, a study of 71 gay and 71 straight men (all HIV-negative), physical appearance was more important to the gay men's sense of self, whereas being physically active was of greater value to the heterosexual men. Gay men stated that they exercised to improve physical attractiveness, whereas heterosexual men exercised to improve fitness, health, and for enjoyment. There were no differences between the gay and straight men on body size satisfaction, eating disorders, or self-esteem. For both groups, the value placed on the body and the distance between ideal and self-acceptance can give rise to distress in many people living with HIV.
Cognitive therapy aims to understand how our thoughts and beliefs about situations influence our feelings about those situations. Body image evaluation refers to satisfaction or dissatisfaction with one's body, while body image investment refers to the mental, behavioral, and emotional importance of the body for a sense of self-worth. In his essay, Cognitive-Behavioral Perspectives on Body Image, the psychologist Thomas F. Cash, Ph.D., writes that a positive self-concept may help the development of a positive feeling about one's body (whatever its shape) and serve as a buffer against events that threaten body image. Conversely, poor self-esteem may heighten one's harsh criticism or hatred of the body.
He notes that cultural messages about the body and interpersonal experiences with others such as parents or siblings influence body perception. The need for social approval may increase a person's investment in socially valued appearance standards. Styles of relationships may also affect body investment. People who are insecurely attached in relationships -- that is, individuals seeking love and acceptance yet feeling unworthy -- may develop faulty or unhelpful body image attitudes.
Cancer literature on bodily changes or disfigurement following surgery generally acknowledges that facial disfigurement is probably the most challenging and that adolescents tend to adjust less well than adults. Investment in appearance usually changes over time, and people tend to re-evaluate the body part affected by cancer. This can be a healthy strategy when coping with disfigurement.
This is probably because the face, more than the breast or heart or leg, is closely associated with the self. In her brilliant essay, AIDS and its Metaphors, the late Susan Sontag wrote that polio face could be horrifying because it withered the body but spared the face and was, therefore, not considered repulsive or frightening like leprosy or syphilis. She writes:
... the ... reaction to polio owes much to the privileged status of the face, so determining of our evaluation of physical beauty and of physical ruin. All ... of modern philosophy and modern science has not reduced by one iota this culture's conviction of the separation of face and body, which influences every aspect of manners, fashion, sexual appreciation, aesthetic sensibility -- virtually all our notions of appropriateness.
Sontag writes of the religious paintings of Saint Sebastian, Saint Agatha, and Saint Lawrence,
... with the face demonstrating its effortless superiority to the atrocious things that are being inflicted down there. Below, the ruin of the body. Above, a person, incarnated in the face, who looks away, usually up, not registering pain or fear; already elsewhere ... Our very notion of the person, of dignity, depends on the separation of face from body, on the possibility that the face may be exempt, or exempt itself, from what is happening to the body. And however lethal, illnesses like heart attacks and influenza that do not damage or deform the face never arouse the deepest dread.
In her book Autobiography of a Face, Lucy Grealy describes what it was like to grow up with a facial disfigurement -- in her case, the result of repeated surgeries for a cancer of the jaw, leaving her with half of her jaw removed on one side. Grealy writes that her entire character was formed around her facial disfigurement and people's reaction to it.
The cruelty of children is immense, almost startling in its precision ... their open, uncensored stares were more painful than the deliberate taunts of my peers at school, where insecurities drove everything and everyone like some looming, evil presence in a haunted machine ... there was only the fact of me, my face, my ugliness.
This singularity of meaning -- I was my face, I was ugliness -- though sometimes unbearable, also offered a possible point of escape. It became the launching pad from which to lift off, the one immediately recognizable place to point to when asked what was wrong with my life. Everything led to it, everything receded from it -- my face as personal vanishing point. The pain these children brought with their stares engulfed every other pain in my life.
One of the many reasons lipodystrophy presents such tremendous challenges is that it attacks the modern and romantic notion of the face as the true representative of the self. Unlike mastectomy, which can result in a sense of being "less of a woman," the loss of face, as it were, alters the very notion of the self, or the self as presented to the world.
As has been suggested, older patients may cope better with lipodystrophy than younger ones because of the natural waning of physical attractiveness as we age and the accumulation of life wisdom, education, and inner strength, as well as outer assets or achievements. Lipodystrophy can impose a physical alteration usually associated with old age.
Anorexic men and women are constantly urged to value themselves in ways other than their quest for perfect thinness, that there is more to them than appearance alone, that their qualities and achievements and relationships are what they should focus on to regain their health. Can we learn anything from this approach?
What can be done for people who are psychologically adversely affected by lipodystrophy? Clearly it makes sense to offer antidepressants to people who become depressed and anti-anxiety medication to those who are anxious about their appearance. In my clinical experience, psychotherapy can be extremely helpful to people for whom lipodystrophy becomes a catalyst to examine issues of self-acceptance, acceptance of homosexuality, anger at homophobic parents or society, and for whom reliance on appearance alone seemed to offer the only avenue to relationships. Additionally, for some, the physical effects of HIV treatment cause a reexamination and a need for therapy or support around the reality of an HIV diagnosis, with all of the fear and possible stigma it may raise.
It's important to continue to educate medical providers and policymakers about lipodystrophy and its sometimes dramatic effect on quality of life. And then a real examination is necessary -- confronting the intense superficiality and scrutiny of all of us who are guilty of taking things at face value, pausing to question why we think the face is the person, and looking beyond the face and into the person inside.
Kristina Jones, M.D., is Assistant Professor of Psychiatry at Weill Cornell Medical College, New York Presbyterian Hospital, Center for Special Studies, David E. Rogers Unit.
Chuck Finlon, L.C.S.W., is Senior Social Worker at Weill Cornell Medical College, New York Presbyterian Hospital, Center for Special Studies, Bernbaum Unit.
[Patient information is composite and changed slightly for purposes of confidentiality.]
Jesus Martinez's thesis, Lipodystrophy and Body Image in Gay Men with HIV/AIDS: Some Key Psychosocial Issues, can be found on ACRIA's website: www.acria.org.