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Personal Perspective: Doing Everything Right

Summer 2005

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

It was 1991 and I looked healthy. I had given up all the drugs in my life -- alcohol, heroin, cocaine, crack, nicotine. But I was starting to lose weight, too much weight, and I got diarrhea. So I got tested for HIV -- my wife kept telling me to. They told me I was near death -- my T-cells were 10. So I started AZT and got my weight back, but I stayed in the closet about my status. I wouldn't talk about the virus. I wouldn't go to any HIV programs -- no groups, no pictures, no marches, nothing. I kept it from family, friends, everybody.

But I was still off drugs and doing well. I went back to church, wearing many hats and knowing everyone. I was a single parent now, raising four kids, because my wife had passed from the virus that year. And then all of a sudden I started to lose weight again. I had a very good appetite and was eating, but I kept on losing weight. It was wasting syndrome. People in church were coming up to me, saying, "Look at you -- you're fading away." I didn't know I was fading away until they said that, and then I noticed that my clothes were drooping off of me. I went from 170 pounds to 123. People thought I was going to die. I didn't see it, but they did. I was still living secretively with the virus -- I hadn't told my kids -- but people were whispering behind my back, saying, "He has AIDS" or "He's smoking crack." My self-esteem was so low that I didn't want to see anyone. I didn't want to go outside. I wouldn't answer the door.

I started a new regimen and was able to gain my weight back, but not what I had lost in my face. That's when my self-esteem really went down. I started talking to people with my head down and my hands covering my face, especially when I was around people who didn't have the virus. I'd look around and think, "I wonder if they know?" And then, in a matter of months, I got a big belly -- I looked as though I was eight months pregnant. I blamed it on beer, telling people that it was a beer belly, even though it was too big to be a beer belly (and I wasn't drinking). And since I wasn't a big guy, the belly really showed. I wore oversize shirts -- they helped a little, but not much. It really bothered me when people noticed it. If somebody said, "Wow, look at your stomach -- you're getting old," it made me feel really bad.

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I grew breasts, so I didn't like taking my shirt off in front of women. I didn't wear athletic shirts in the summer because they looked like maternity shirts. If I had sex, it had to be in pitch dark, which made me feel bad about myself. So I didn't have any partners, female or male. I've found that male partners don't seem to care about my body changes the way I think women do. But I won't shower with other guys. I'll either wait or make sure that I have a robe to put on. I won't wrap myself in a towel. Even around my kids, I always have lots of clothes on. I'll never take my shirt off around other people, no matter how hot it is.

Then I got neuropathy, and my thighs got skinny. The beach and pools were out. I wouldn't go anymore. So in 1999 I started a new combination and my belly started to go down. I actually cared more about how I looked than about how much virus was in my system. I didn't care if my viral load was high and my T-cells were low -- I didn't want to start anything new if it might affect my outward appearance.

I enrolled in a study of Sculptra to try to get back my face. I've only had one injection so far, but it made a big difference -- it made me feel so good about myself again. I wasn't afraid for people to see me. My belly went away once I changed my drugs to Kaletra, Epzicom and Viread a few months ago. I can see my muscles again. Right now, I feel great bodywise, healthwise, but my face makes me stop and think. When I'm around healthy people, hanging out with the guys or in church or at a club, I cover my face with my hand. I don't want people to judge me.

I have a habit. I look at people's fingernails, I look at their faces -- on the bus, on the subway, in a store, anywhere -- and I think, yeah, he's got the virus, or, no, he doesn't have the virus. I'm African- American, and we don't talk about the virus as much as we should. We just look at each other and judge each other. I'm a Catholic, a strong Catholic, and when we do the sign of peace in church, I'm so afraid of people knowing my status. I don't want them to shy away from me or feel sorry for me. I just want them to keep treating me like they've been treating me.

I've been living with this virus for a long time now and I'm exhausted, exhausted from living with the virus. Sometimes I'm in my house, and I'm exhausted. I do everything right -- I don't smoke, don't drink, have a Higher Power, no drugs, sleep right, get my 8 to 9 hours a night. I pray, I meditate, I have community at church. I have an ear for everybody, but now I want somebody to have an ear for me. And I want my face back.

Name Withheld is one of many people living secretively with HIV.


A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!



  
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This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.
 
See Also
An HIVer's Guide to Metabolic Complications
TheBody.com's Lipoatrophy Resource Center
Ask a Question About Facial Wasting at The Body's "Ask the Experts" Forums
More Personal Accounts of Facial Wasting (Lipoatrophy)
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