PatientsLikeMe ™

I'm twenty-five years old; when I was born, the AIDS epidemic was already a little over four years old. I've never known a world without HIV and AIDS, and especially after I came out as a gay man, the virus always lived near the front of my consciousness. I worked in HIV prevention and education for several years, and did as much of my own research as I could to learn more about this disease. I knew that it was completely preventable, and I knew the effects it had on the body.

However, all my knowledge about HIV and protecting myself didn't stop me from making some very unwise decisions. I had self-esteem issues, and really didn't like myself very much. I was ashamed of being gay, I was depressed, and when I looked in the mirror, I often hated the person I saw looking back at me. To try to escape these feelings of shame and self-loathing, I turned to drugs and unsafe sexual behavior. Barebacking and crystal meth defined my life for several years, even while I was educating my peers about HIV prevention. Despite my knowledge about the disease, I honestly didn't think that HIV could ever happen to me; I was nineteen, and I thought I was invincible.

On January 5th, 2005, when I went for my regular HIV test, I was told that I was HIV-positive. I can't quite sum up in words the emotional impact that my diagnosis had on me; I felt afraid, ashamed, angry, and generally numb. I thought my world was over.

I walked out of the clinic in a daze, and wandered into a nearby shopping mall. It was a Wednesday afternoon, and it was practically deserted. I bought a pound of fudge and sat in an empty movie theatre, watching The Phantom of the Opera. I cried.

It took several months before I could accept my diagnosis; I only told a few close friends, and kept it a secret from my family. Learning that I was positive gave me a really good excuse for using more and more meth, and my addiction quickly grew out of control. I lost my friends, my jobs, and ended up dropping out of school before I finally woke up and checked into rehab (the first time). It wasn't until I started to treat my chemical dependency and actually care about myself that I began to monitor my health and become more open about my HIV status. I told my family, and my friends, and began doing some more public HIV advocacy work as an "out" HIV-positive person.

About a year after my diagnosis, my T-cells had declined, and my viral load was skyrocketing. My doctor recommended that I start taking antiretroviral medication; the idea of taking pills every day for the rest of my life terrified me, but the idea of dying of an opportunistic infection terrified me more.

When I started taking the antiretrovirals, the doctor warned me that I might experience some side effects. I wasn't prepared for just how harsh these medications were. For about two weeks, I could barely get out of bed except to go to the bathroom, and I was having terrible night sweats and strange, psychedelic dreams. The side effects did go away, for the most part, after my body got used to the medication, although I still experience occasional "bad days" when one or more of the side effects will unexpectedly pop up.

Now, taking my pills has become just another part of my daily routine, like brushing my teeth or washing my face. I've even gotten used to going to my doctor every three months and having vials of blood drawn from my arm. I'm actively exploring the organizations and services available to me, and doing everything I can to connect with other HIV-positive people. For me, though, the hardest part of learning to live with this disease has been its impact on my relationships.

I'm always aware of the stigma that surrounds HIV and AIDS, and many times, when I tell someone that I'm HIV-positive, I'm afraid of what they will think. I don't want them to reject me, or feel sorry for me, or focus on the virus and forget that there's more to me than my HIV status. Making the decision to tell someone is always difficult; the questions and thoughts and judgments that come after a weighty statement like "I have HIV" are hard to handle over and over again.

I've found, however, that the more I talk about living with HIV, the easier it becomes for me to actually live with it. An opportunity to share my story with other people gives me a chance to show them the mistakes I've made and hopefully helps them to avoid making them. It also gives me a chance to put a face to the disease, humanizing it and hopefully dispelling some ignorance and fear.

Maintaining my sobriety while living with HIV has been a challenge; without my sobriety, it's pretty much impossible for me to take care of my HIV as well as I need to, as well as my general health. I went through a six-month period of not taking medication prior to my second visit to rehab--part of the reason why I moved up to Minneapolis--and that has had an as-yet-unknown impact on my health and longevity. I'm trying to do what I need to do, one day at a time, to stay healthy and sane.