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Personal Perspective: Doing Everything Right

By Name Withheld

Summer 2005

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.

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.


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