At some point in their life, one in 16 African-American men and one in 32 African-American women will receive a diagnosis of HIV. In 2000, Benita Terrell was one of them.
Here, Terrell shares what her life has been like since that day, what she hopes to share with other HIV-positive men and women in her new role as a peer educator and the stigma she has encountered, as part of a month-long HuffPost Black Voices series that aims to dispel it.
As told to HuffPost Black Voices:
In 2000, I was living a normal life. I was working for Georgia Power, I was dating, I was traveling, I was shopping. I had gone to Georgia with my ex-husband, but we separated and some time after that I found out that I was pregnant. I miscarried, however.
When I was in the hospital recuperating from the miscarriage, the doctor asked whether or not I wanted an HIV test and I said “Sure, why not?” The next day he came back and told me I was HIV positive.
I was in total, total shock. You’ve heard stories where people say “It seemed like I was dreaming and I thought for sure I’d wake up,” but it was not a dream. I do not know how it was contracted, but I guess it was from heterosexual sex, unprotected sex.
The first person I told was my ex-husband. I asked him to go and get tested, but he never did, to this day, that I know of. Some time later, I told my entire family, at one time. I sort of chickened out -- I had my case manager call them on the phone and let them know. My family was all in Pennsylvania, and at the time I was in Georgia, so we did all of it over the phone. After my case manager told my family, they gave me a call and we talked. My family is pretty educated, they’ve worked in the health field, I have a sister who is a nurse practitioner, that sort of thing, so they knew just about as much as the virus as I do. They knew I would live, but of course they were in shock.
I was severely depressed. My alcohol intake increased drastically -- I became an alcoholic, literally. I totally ignored the fact that I was positive for approximately a year and a half. I thought for sure it was a death wish because I knew nothing about the virus [at that time]. Nothing. All I knew was that eventually I’d get AIDS and I would die.
Because I did not seek treatment, I was not on medication and because [of that], the virus got a chance to replicate and grow. There was a time when my viral load was in the hundreds of thousands.
Finally, I went to get treatment and found out that there is hope.
One of the things that my doctor told me when I first went into treatment was that I could live, and of course it was hard to believe at that time -- I did not quite take his word.
I started going to different seminars and workshops and conventions and things of that sort, but it took time for me to realize, “Hey, I’m a normal person, like anyone else who would have cancer.” I started seeing a peer counselor while I was in Georgia and started assisting other people who were positive like myself.
Knowledge is power and the more people are educated and know about the disease -- the medicines and how it controls the disease and things of that nature -- then everyone would not fear it as much as they do. We could win this battle, but we have to do it collectively, which is why I love being a peer educator/peer counselor. The people in my community must go public first, to let the people know who are outside of the community, “Hey, I’m a person.” It’s like having cancer -- no different.
I always have to be careful of what I say and who I say it to, because of the stigma. In day-to-day conversation with anyone -- students, a person on the bus, a person in the store -- there are times when I let them know that you just met a person who’s positive who looks absolutely normal. HIV and AIDS has no face. Other times I feel like I can’t share my status because of a statement they’ve made.
One time I was at a BBQ with friends and other people who knew that I was positive and I was stung by a mosquito. A little bit of blood came out and everyone ran away from me.
As far as dating goes, it has affected me drastically. I am that person who is going to tell you before we have sex that I am positive. Having said that, I don’t date much because I don’t want to tell everybody that I’m positive up front, I have to wait.
Every time [I tell someone], they’re totally shocked and some people don’t believe me. It’s almost like I have to give them proof. Most of the time, I get a call back and they’re wanting to continue to date me. I would say 90 percent of the time, I’ve gotten positive reactions and then there’s that 10 percent that I pretty much scare away.
Right now, I am a student at community college in Philadelphia. My major is behavioral health and human services, a major that I chose because once I graduate, I would love to enter the field of human services and give back to the community that so graciously gave to me over the last 12 years.
Over the years, I have befriended a lot of people and their stories are very bad. I know a lot of people who have become alcoholics or addicts because they’re so depressed. Most of them stop working, they stop seeking treatment, they become homeless; women have become prostitutes. It’s almost like a domino effect. They become positive and then all of the dominoes that they’ve lined up in life begin to fall -- one by one.
I’ve met people who can’t even tell their parents and others who have and their parents will not have anything to do with them. My family has embraced me. They have not changed the way they feel or act around me. We hardly even talk about it now, but I’m one of the few.
Are you living (and thriving) with HIV? Show us what HIV looks like. Email your story to email@example.com and help put an end to the stigma associated with the disease.