Dr. Cindy Patton, an associate professor in the faculty of sociology and anthropology at Simon Fraser University in B.C., was invited to address a small audience about body image and HIV at the Hall Building last week as part of the last talk in the Concordia University community lecture series on HIV/AIDS.
Patton is currently conducting an institutional ethnography of a clinic at St-Paul’s Hospital in Vancouver where “folks get information and treatments for their lipodystrophy (a redistribution of fat. Loss of fat in the arms, legs and a build up of fat around the stomach and breasts) which is a side effect of their HIV medication.”
She’s working on a research called the “under scanning lipids project.” Patton said it examines the changing relationships between “the biomedical disciplines, focusing at the level of the interface between clinicians working to educate and deliver services to HIV positive people with dyslipidemia.” (She used this term interchangeably with lipodystrophy which are essentially metabolic disorders).
Patton looks at clinic attendees and is trying to understand how these mostly gay guys who are very high level consumers of anti-viral therapy come to accommodate this new language of metabolic disorders.
“People with HIV who are undergoing the anti-retroviral treatment have very strong opinions about the changes in their body shape. Not only did they experience psychological effects relative to their body image, which they describe as having unsightly lumps and dumps, but they also believe that these body shape changes are associated with increased risk of heart attack,” (although the research about the risks are inconclusive.) explained Patton.
To give a little historical context, Patton said that from the earliest days of mainstream media coverage of HIV/AIDS, even in the early 1980s when it wasn’t a popular subject, people living with AIDS were represented as “wasteful.” They were depicted as “gaunt young men dying before their time” in the case of young gay guys.
It was only discovered in the 1990s that people who were taking combination drug therapies over a period of time were experiencing metabolic disorders such as lypodystrophy.
Patton said research suggests lipodystrophic patients felt a loss of self-esteem, a sense of rejection by partners and a renewed fear that they will face discrimination because they now look like a person with AIDS.
“Essentially, we have a situation where gay men seem to feel better and they have laboratory results confirming the success of their drug regiments but they look worse.”
One of the gay men she talked to used to think that gay men had AIDS if they were skinny. “Now you look for lumps in weird places.”
The project looks comparatively at women, native clients, injection drug users and gay men. But the main populations that she has been focusing on are middle class gay men.
Gay men more than any other population will be prescribed the complex drug regiments with metabolic side effects because drug users are perceived to not be able to stick to the regiment and there is an under-diagnosis of HIV in women.
In interviewing these guys, Patton has realized that the body changes are very problematic.
She explained, some men who have cervical humps are concerned about this and try to hide it with their clothing.
She also noticed that in a number of men, the pectoral area gets a little lumpy (men breasts), which pushes clinicians to send their male patients for breast cancer screening.
Patton noticed most of the men react by saying, “What? Men can get breast cancer?”
The thinning of the arms and the big belly also seem to be quite troublesome, she said.
Patton said she’s noticed during the encounters that these men will say they don’t like to go to the gym anymore. “They’ll go to a gym that’s a community centre gym but not one of those gyms were there are big, buff guys.”
But, according to Patton, the one big body change that seems to stands out is facial waste. (Holes in the face).
Patton read out a part of an interview where one of the clients, who is a local TV celebrity in Vancouver, was suffering from facial wasting but was treated.
“‘Well, the psychological effects of facial wasting are traumatic. It’s really depressing. You go outside in the world and people look at you, they know, they can tell something is wrong.
“You’ve gotta face the public everyday, you’ve gotta look in the mirror and there’s nothing you can do.'”
In another client interview that Patton read, the patient said, “Basically, when I look at myself, I see like, a 70-year-old man in the window. You know, like someone you see in Miami sitting on a park bench in their shorts.”
The project just started a month and a half ago and Patton says she hopes to do more work on “the difference in people’s perception of what they look like to other people and their explanation of what other people look like to them.”
