Lipodystrophy is not just an unfortunate complication of anti-HIV therapy, but can cause physical and psychological pain, leading to poor social functioning and isolation according to a UK study published in the April 2003 edition of Sexually Transmitted Infections.
In a qualitative study, investigators from the Royal Free Hospital, London, and University College, London, Medical School conducted in depth interviews with 14 people (twelve men and two women) who developed body shape changes after starting HAART. Average age was 42 (range 28-61), with mean time since HIV diagnosis a little under eleven years (range three to 17 years). Patients had been taking HAART for an average of four years (range three to six years).
Patients were individually interviewed by investigators and asked a series of questions about how lipodystrophy affected them as individuals; the effect lipodystrophy had on their social world; how people responded to their lipodystrophy; and, what their thoughts and concerns about the future were.
Effect of lipodystrophy on the individual
Initial awareness of the development of lipodystrophy came for most patients after they noticed physical changes in their body shape and appearance. One 36-year-old man commented: “I’m so vain. I used to have a lovely bum. Now it’s flat. That’s a strange one”.
Changes in body shape were accompanied by perceptions of rapid aging, especially if fat was lost from the face, and pain and discomfort when sitting if fat loss occurred in the buttocks.
Economic consequences often followed-on from the fat changes, with patients reporting that they had to replace clothes which no longer fitted, and women in the study reported that their body changes meant they found it difficult to find regular sizes which fitted.
Depression, a loss of self-esteem and self-confidence were all associated with body shape changes. One 40 year old man reported that he “did not go out for months and months”, had “huge psychological problems” and “lost confidence socially.”
A particularly negative impact on sexual relations and libido was also evident. “Without doubt it really affects my sexual confidence. I don’t even consider sexual relations any more”, said a 39 year old male study member.
What’s more, lipodystrophy was considered by patients to reveal their HIV status, being called the “Kaposi’s sarcoma of the 21st century” by one, with another saying that people ask him if he had been ill.
Lipodystrophy’s impact on social functioning
Unsurprisingly this had led most patients to reduce the amount of social contact they had, and in extreme cases to totally shun a social life. Narrowing of social life was particularly evident among gay men, who stopped going to gay venues for fear that their body shape would indicate that they had HIV and would not conform to the physical standards which have a particular premium on the gay scene.
People who were knowledgeable about HIV were more likely to be understanding and accepting, with partners trying to be supportive. One 28-year-old man said his partner “says it's okay, you look alright…it’s nice of him to say I look alright, but to me I don’t”.
Comments from strangers could be hurtful; one woman reported that she was asked if she was pregnant.
How individuals responded to lipodsytrophy
People who started HAART after being ill with HIV, and those with experience of several HIV treatment regimens were more likely to be accepting of body fat changes and to just see them as an unfortunate side-effect of therapy. “I’ve been living with this thing [HIV] for 15 years, so I am just grateful every day that I am still alive”. These people were less likely to consider treatment changes or breaks.
Major life changes had been made by some people because of lipodystrophy, such as taking exercise, eating more and having facial surgery. These changes were viewed positively by some.
Many people reported an initial reluctance to bring their concerns about body changes to their doctor’s attention, believing them to be trivial. However, there was a general feeling that doctors took their patients’ concerns seriously, although one man reported the experience of an acquaintance whose “doctor was virtually dismissive” telling him “you’re lucky to be here really”. All 14 study members said that they needed more psychological support.
The future
Concern was expressed about the long-term prognosis of lipodystrophy, particularly that little seemed to be understood about the condition. The link with cardiovascular disease was also a cause of worry.
Patients who had been ill with HIV were less likely to be unduly concerned about the future, with some seeing the disadvantages of lipodystrophy balanced by a longer life, with lipodystrophy being an acceptable, if unpleasant “price to pay.”
The investigators conclude that body shape changes can “negatively impact on body shape and functioning, raising issues of illness and mortality, and can have a detrimental effect on relationships”. They add that lipodystrophy should not be viewed simply as an unfortunate complication but one that can cause physical and psychological pain, leading to mental health and social problems, which should be addressed by healthcare professionals.
Further information on this website
Body fat changes on HAART - overview
Lipodystrophy - factsheet
Power R et al. A qualitative study of the psychosocial implications of lipodystrophy syndrome on HIV positive individuals Sexually Transmitted Infections, 79: 137–141, 2003.