How Support Groups Are Born
An Interview With Mindy, Founder of Hetero Pos Atlanta
By Myles Helfand
TEN YEARS AFTER SHE was diagnosed with HIV, Mindy -- now 36 years old, white, heterosexual, and alcohol- and drug-free -- grew tired of traveling cross-country to HIV-positive events and retreats in hopes she'd meet others who shared her background. So she started Hetero Pos Atlanta, her own group in Atlanta, and has watched it grow far beyond her expectations.
What is Hetero Pos Atlanta?
It's not a formal support group, and it's not a dating service. It's basically a social, private organization that I started for heterosexual, HIV-positive professionals; that was how we marketed it. We meet once a month, go out and just basically do social things: We go bowling; we go to concerts. I had a barbecue here at my house a few weeks ago, we're getting ready to have a Halloween party, things like that.
How did you originally start getting the word out, if it was an informal, private group?
There was an article written in an Atlanta newsletter -- Survival News, produced by the AIDS Survival Project -- called, "Heterosexuals and HIV: Where Are the Resources?" and that's what kind of sparked me to do it. So I wrote to that newsletter and they put a little blurb in, and then I went on one of those free create-your-own-Web site pages on Homestead and just made up a little page. It shows up in a search, so I get a lot of interested people that way. Then we made up a bunch of posters with our e-mail address and put them at different AIDS service organizations and different clinics, places where we knew people would read them.
It's pretty surprising that Atlanta didn't have any heterosexual support groups.
It is. I've been positive almost 14 years and I've lived in Atlanta the whole time, and up until I started this group I'd met maybe about three other heterosexual people that are positive, either at conferences or just different things I would happen to be at.
AIDS Survival Project, here in Atlanta, is a classic AIDS organization. They get a lot of phone calls asking, "Do you have heterosexual support groups, Do you have any heterosexual events, etc.?" and they don't. It was just the way it is -- it's not to say they wouldn't offer them, but they never had enough people to get anything going. Most of the people I've met I've either met in California at retreats for HIV-positive people that I've gone on, or something like that. But I've always known they have to be here, somewhere. What we found is that these 30-some people that are in this group are heterosexual, most of them are upper-middle class professionals, and truthfully they don't utilize the services of ASOs as much as some other positive people might.
How do you mean?
When I was first diagnosed, I had very good family support, but the only thing that was available were things like AID Atlanta and AIDS Survival Project -- which are all wonderful organizations, but they seem more able to meet the needs of people who need housing, who have legal issues, who need medical care, things like that. People in this group, most of us are still on private health care, half of us still work, we have a house, have good support systems. I guess our level of what we need is different because it's just actual support and interaction, getting to meet other heterosexual, positive people.
It is to me too, but somehow that's just the way it is; that's just the way it's been here. No one's ever really stood up and said, "Here we are, we're heterosexual, we're positive, we're white, we're healthy, we have needs too!"
What made you decide to say, "Why don't I just start up a group?"
It's kind of always been in my nature to be the creator, to be the leader. I love to organize things; that's kind of just my personality. And for six years I searched for somewhere I could feel really comfortable or where I could fit in. And I think you go through different levels, post-diagnosis, of what you need. Everyone in this group is basically at a point where they don't want a formal support group, and most of them have tried the whole Internet-dating thing -- and there are some success stories there, I won't argue with that, but they don't want that. So for the last four years I just kind of laid low and tried not to worry about it. And after I read that newsletter article I said, "You know what? You can complain about it, you can wonder when it's [a local support group] ever going to happen, you can wait another 10 years for it to happen, or you can do something yourself. And really I just stepped out there and did it. I had no idea what was going to happen.
How old are you?
So you were diagnosed then when you were in your 20s... You were in college at the time. How did it happen?
Actually, I had been really sick, and had gone to about three different doctors with huge rashes and huge lymph nodes and high fevers. And here I was, Little Miss Nice White Girl, and nobody asked me a thing, nobody brought it up, nothing. Finally, I brought it up to my primary care doctor after I'd gotten better from whatever mysterious thing that I had. He tested me, and then called me and said, "I need you to come into the office." And I said, "Well, you just basically answered my test results for me on the phone." [Laughs.] So my mom came to the doctor's office with me, and I knew what was coming.
Did you lead a "normal" college lifestyle?
First off, I hate the use of the word "lifestyle," because it always projects an "image" and the image is different for different people. I have never led a particular "lifestyle." I've gone through various stages in my life and in my own personal development. I will say that during my college years [at Clemson University, in South Carolina], I definitely pushed the limits of just about everything I could. I drank a lot, used pot and cocaine, and had frequent and numerous sexual partners. Looking back today, I can classify my behavior as reckless. I liked chaos. I loved adventure. I longed for the rush to take me away -- although I'm not sure to where. Was it "normal?" To me it was; it was the normalcy I had created to live in.
Do you know how you contracted HIV?
I don't know from who. I just know it was through heterosexual sex. I've never had a blood transfusion; I've never used IV drugs.
How quickly did things change after you were diagnosed?
Things changed at different paces for me. I stopped drinking and using drugs right away, concerned for my health. I definitely stopped sleeping around! I had my same friends and told them little by little. I had a lot of family support. For a long time I missed the party-time Mindy and I missed my sex life. I think I mostly missed that feeling and rush of adventure; of being on the edge of "something." Through my mid-20s I grew up a lot; I began taking HIV meds in 1995. I slowly -- and sometimes to myself, mysteriously -- became much of the person I am now. I believe that my experience helped shaped that person, and I don't live with many regrets.
I'm definitely happier now. I don't need alcohol or drugs to give me courage; I don't need a man to make my life complete; I don't need to be the center of attention or the stimulus behind chaos! I have found there are adventures beyond those I thought I lived in college, and that there is sex after HIV, and that most things happen in the time in which they were intended, sometimes with a little help along the way.
My health is great. My CD4 count is high and I have maintained an undetectable viral load for many years. My medication regime has remained the same so I don't have any good medication anecdotes to share. I am following the "if it's not broken, don't fix it" philosophy.