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.
So it's for both men and women?
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.
What were you doing with your life at the time you decided to start up Hetero Pos Atlanta?
Well, I work full-time. I have a lot of hobbies. I'm very close to my family -- I spent a lot of time with them -- and I have a lot of great friends who are negative, so basically this was just an extra thing to add to my list of things to do.
Has it really changed your lifestyle?
Not my lifestyle, but it's definitely changed how much spare time I have. Like I said, I had no idea what was going to happen; after I started out with nine people I thought, well, you know what, maybe that'll be OK, just 10 of us. But now I hear from people every single week, so it grows and grows and grows. It's a lot of work, because I'm trying to keep personal information on people, I'm trying to schedule our monthly events, I'm trying to figure out what could best be delegated out. And just like with any club or organization, you're going to have a core group of people who are always going to be there and who are going to be the ones who are interested in helping or maintaining the group. So that's the point we're at now; I'm delegating stuff out to people, like, you manage the Web site, you open the bank account, little things like that, so hopefully that'll take some of the weight off of me. But I also feel like this is my little baby, so I'm not willing just yet to let it all go.
So you really are kind of in the process of formalizing the group, in a sense.
Yeah, and we had a big meeting in August and took a vote on which way we wanted to go with this: Keep things the way they are or really try to expand? I don't think it should be my decision; it has to be a group decision. And 28 out of the 32 people said, "I want to keep it private, but it needs a little more structure." Right now, I mail out a personal information sheet, I mail out a confidentiality statement, I mail out a "What are your ideas?" list, and I get all that back from them and just keep that on file.
It sounds pretty well-organized. Did it start up that way?
Oh no, oh no. Before I started the Web site, I had a good six weeks where I was typing things up, shaping what my vision was for what this group was going to be: that it wasn't a formal support group; there was no counselor or therapist; there was no dating service. So I had a lot of the initial stuff very well organized before I even met with these other people in May.
Have you noticed any difference between the way men and women act during meetings, or the way they deal with their HIV in general?
What I've seen is that men are much more excited to see other men who are heterosexual. Because they have found in the past that, though they all have become friends with a lot of homosexual men, they just really wanted to connect with someone who really knew how they felt. They talk a lot about disclosure; and a lot about dating -- much more so than the women.
What do the women mostly talk about?
Just life in general, about anything. We've become pretty close friends. I say it's not a support group, but we derive support just from being around each other and talking to each other about whatever's on our minds.
So meetings don't really have agendas or anything.
Once a quarter I have planning meetings, where I get dinner and we discuss what's going on with the group. But every other thing is a function: bowling, a laser show, a barbecue, things like that. Just like you'd go out with any of your friends. And to get back to your earlier question, there's a lot more men than women, too.
Really? What's your breakdown?
We have 13 women, so that's 17 or so men. And I hear from more men that have yet to make an appearance. So they're not quite ready to, I guess, come out and take that step. But I hear from people every week.
How do you help people to take that step into the group? I'm sure there's a significant difference between people who have been going out with you guys since May vs. people who have just joined.
The May meeting was actually pretty easy, because everyone was going for the first time. Now we always have new people coming. I'm the first point of contact; usually they get in touch with me through e-mail. I send something back to them through e-mail. I give them my phone number and say, "If you'd like to call me, please call me." And eight times out of 10 they call me within two days, and I just try to give them the rundown of what's been going on, tell them it's a great group and a great group of people, and this is our next event. I offer to meet up with them at some point before the event, if it's a few weeks away. You try to kind of reassure them that they're safe and it's fun, a nice group of people, and to really encourage them to come. And then, like I said, eight times out of 10 they're at the next event. And then when they get here, when they're at the event, I try to take the lead and introduce myself, because they're usually looking for me -- they're like, well, where's Mindy?
Do they know what you look like?
Sometimes; it depends. A lot of times I will let the new people know, say, that I'll be there 15 minutes early, or what I'll have on. At the very first meeting I brought a balloon with me. [Laughs.] I was like the big idiot with the mylar balloon. But I thought, how else are people going to find me?
So, yeah, it's their own personal decision, but most of the people I talk to come out to the next event. And everyone is very receiving of them. They show up. They introduce themselves. They blend right in. Though there was one event, I think it was our third, we had two new people come. One blended in real easily, but the other one was having a really hard time. He got pretty upset. He said to me, "Well, obviously you guys all have a little niche here." So now, when I do talk to people before their first event, I say that some of us have now known each other since May, so we're more comfortable with each other, we know more about each other, we know each other's stories. You have to give it time. And I've also talked to the group about that: please, really, really try to go out of your way to make sure this person is included. I also ask every person when they start to do their very best to commit to six months of coming to events.
Do most people stick to that?
Yeah, they all have. I haven't actually had anyone who told me, "No, I don't think I can do that." I've learned that you at least have to go to something three times before you can make a judgement on it, so I ask people to make a six-month commitment. Then you'll have an idea, and I'll respect it if you don't want to come back or you let me know what's making you uncomfortable, or if it just wasn't what you were looking for. We haven't really run into that yet, though.
Do you get new group members through doctor referrals or other support organizations?
Yeah. I've gone out to different ASOs, and typed a generic, "This is Hetero Pos Atlanta, this is what it is," and told them if you get a call or you have a client who is heterosexual, just let them know and send them on to me. People who don't have access to the Internet, their caseworkers will give me the person's phone number, and then I'll go ahead and call them. We'll take them however we can get them! [Laughs.]
How large would you be comfortable with Hetero Pos Atlanta getting?
That's what we were talking about at our meeting in August. I don't want to limit what could happen. I'm sort of shocked just to know that there are 32 people out there -- and, like I said, I've probably heard from 10 others who I have yet to have second contact with -- but I also know there are more and more people out there. I'd love to grow to 50 people in the next few months. It was a gamble from the beginning, and I have no idea what will happen next.
Do you network with other support groups around the country?
We're in the very beginning stages of doing that. There's Heterochat; the founder's out of Maryland, and he basically started out just like we have, and they now are just huge. They have an annual heterosexual retreat for HIV-positive people; they just had one in Atlantic City in August. It's going to be in Atlanta next year. We're kind of in the process of talking to those people; they're going to give us space on their Web page to plug ourselves. And some of our members have already been asked to take part in the planning and organization of next year's Atlanta retreat. I'm glad it's going to be here, because I've always had to fly to California or Atlantic City, etc., and it seems to me that Atlanta would be a pretty smart place to have things, 'cause we're kind of in the middle. [Laughs.]
Well, especially at the beginning -- when you realized you wanted to reach out and find others like you, and were flying across the country in order to do it -- it must've been not just expensive and time-consuming, but kind of frustrating as well.
It was very expensive, and it was very nerve-racking, but I just kind of said, "You have to: What's the worst thing that can happen when I go?" And, you know, one of my closest girlfriends now I met five years ago in California. She lives in Washington state.
How involved in the group are your members' friends and families?
We voted at our first meeting, because we do have members who have children or are in relationships, so we have certain events that are open to friends and family. They can bring their kids, their parents, they can bring their roommates in my case. They can bring siblings, anybody, as long as they're HIV-friendly and they know about us -- we don't want anyone coming who's going to be blown away all of a sudden when they realize they're in a room with 30 people who have HIV.
Right: You don't want it to turn into a daytime talk-show episode or something.
Exactly. But that's really worked out, and it's actually allowed us to meet other people.
How long have you been with your current roommate?
[Turns to roommate.] How long have I known you? Too long. [Laughs.] I think we've known each other six years, and we have lived together for five years.
That's a long time to have a roommate.
Yeah. [Laughs.] But I did the gamut. I lived with my boyfriend for quite a long time, and lived by myself, and right now I'm not involved with anyone. This works out well.
How are you feeling about dating these days?
I am on a hiatus from dating. My personal preference is to date someone who is also positive, but sharing a virus does not make two people compatible. I keep an open mind, but as time passes I become more and more disheartened and realize that I may never meet the man I envision myself with. I believe in compromise, supporting your partner, growing together, etc., and realize [that] all people despite their HIV status face the same challenges in seeking and maintaining relationships. I am realistic that my chances and choices may be limited. I am happy with who I am independent of a man but the romantic in me still longs for the "click" when you know there is a connection and spark between two people.
Was your last boyfriend HIV positive also?
You said that your support group is not a dating service, but have you had any coincidental dating between members?
Yeah, we have.
Are you in favor of that happening?
Oh yes, definitely. 'Cause, I mean, nobody is trying to act like they're not looking for their soulmate or whoever is going to give them this big love rush. We're not trying to pretend that we're so independent, that that's not what we're looking for. I just didn't want that to be the overall focus of the group. We have had two couples so far coming out of this group -- they're doing fine -- and the only thing that we did establish at the first meeting was that if you couple off, that's great, but please try to still attend the group as a couple. I'm sure at some point, when we have more couples, we'll have to deal with when they are no longer a couple, but we'll cross that bridge when we get to it.
Most of us are between our early 30s and late 40s, so we've had a lot of people who've been married and divorced; it's not like were 16 and trying to run around with whoever. I think we're looking at relationships -- even dating relationships -- from a little bit different perspective. There is a very large group consensus that we all do want to date and be with someone who's also positive.
Pretty much everybody feels that way?
I'd say 95 percent. And I think that's just a personal decision.
Do you feel that way personally?
I don't really have a set perspective on it. I believe that you never know who you're going to meet and when you're going to meet them. And I've had to learn that you have to take chances in telling people: give them a little more credit and let them make their own decisions. I think a lot of the reason that people feel like, well, I'll only date people that are positive and that I meet through HIV-positive functions, is because then the whole issue of disclosure is already taken care of. That's the real big thing. I think that's the big premise on these Web sites for HIV-positive people: You don't have to tell anybody, because they already know, and you already know when you read their ad. I've only been with one person since I've been diagnosed who was negative, and it took me a long, long time to tell him.
How long did you end up dating him?
After that? Not that long. [Laughs.] And that's something that's just with them. We talk a lot in the group about what we'd do if we were HIV negative. If I was HIV negative, I'd like to think I was open and educated enough a person to date a man who was HIV positive. But I'll never have to make that decision now. [Laughs.] But I don't know. When you really have to look inside yourself and decide, I don't know if I would. But you can't make decisions for other people. You have to at least give them the chance to make their own decisions.
True, and for you to have the confidence to say, "Hey, I'll date whoever if it's the right person," it shows that you have a lot of faith in other people.
Yeah, I do, still. [Laughs.] I've had my periods where that faith has faltered. In the last three years I've really come back around to believing that. None of us are perfect and most of us are the protectors of our own personal agendas, but overall I still choose to believe in the good in people. But I have definitely had my periods of time where I didn't have faith or trust in just about anybody.
Did one of those periods coincide with when you told your last HIV-negative boyfriend you were positive?
Yeah, exactly. That's such a kick in the face, because it's like, you know, it's still me.
How long did you wait before you told him?
About three months.
How did you tell him? Were you just sitting down at dinner when you said, "I'll have the crème brûlée, and by the way..."
I have this tendency, even with my friends [laughs], that we'll just be out driving in the car and all of a sudden -- I mean really out of nowhere -- I'll be like, "Well, I really have to tell you something." To this day, I start crying right after I say that -- not hysterical or anything, but I get tears in my eyes. And I'm like, "I have to tell you something," and they're all, [whispering] "What?" [Laughs.] "What is wrong?" And I just say, "Well, I have HIV." And then they're like, "Oh!" [Laughs.] It just blindsides most of them. For some reason it's always in the car, I don't know... My parents said that maybe I think there's nowhere they can go then; because they're in the car, they're driving, they can't just turn around and walk away.
I really haven't had any bad experience. I mean, even with the HIV-negative guy that I told, he wanted to hear the whole story, and we're still friends. It just wasn't going to develop past that. We didn't get into big in-depth conversations about, "Do you want me to take you and educate you on safer sex?", things like that -- we didn't ever take it to that point, so I don't know. There's a guy in our group who has always dated negative women, and he basically tells them within about ten minutes of meeting them. And he screens them out that way. He knows within ten minutes whether he's attracted to that person at least, and he'll tell them right off the bat. And if they want to still get to know him for him, then they do, and if they don't, they don't, and he has an answer.
Has that generally worked for him?
Yes, it does! He's actually engaged to a woman who's negative; they've been together two years. He told her the first night they met, and she said, "Well, let me call you." She called him a couple days later, and her basic answer was: You know, the little I know about you, you're someone who's worth getting to know more, and, you know, sometimes you don't pick who you fall in love with.
Wow, what a nice story!
Yeah, it is. I've talked to her pretty extensively about it and I say to her, "You know, I'm not trying to put you on a pedestal or say you're a martyr but" I'm like, "Why?" [laughs] But she has a very good point: She's been there and been divorced; she had her time of fun and frolic where she said she was probably putting herself at more risk of being infected than being with one person who she knows is infected and using the right precautions; and she's raised her children, she doesn't plan on having more. And she kind of takes those three things as the big factors.
Have you done any public speaking, outside of your involvement with your group?
I've done several personal-experience panels at training seminars for people who want to volunteer with different ASOs or in the medical field. You just tell them what you want to tell them, and they ask you questions. But I haven't done that in several years. I would love to be involved in an education program, but I have found that the forums calling for speakers set limitations on voicing what and how HIV should be addressed and prevented. You find audiences wanting to hug you to show they have "no fear" or wiping their eyes in sadness. Neither of those responses are meaningful to me. I realize that one life could be touched from an audience of hundreds; a young girl who remembers your face when faced with the decision to have sex without a condom and makes the choice not to, but as I watch infection rates in young people increase again in recent years, I am more and more discouraged.
Do you think you'd be interested in doing any public speaking eventually?
Yeah, that's also one of the things the group's talked about. We have two members who are very, very active. They give about a speech a week to schools, from elementary up to high school. And they do churches. They really have made their niche in Atlanta, so we have them. I would love to speak, but I might have my hands kind of full right now.
Yeah, especially with your full-time job. What do you do right now?
I have a management position, working for a radiology group, where I focus on compliance issues, training/education and client management. It's not what I had thought I'd be doing. My degree is in social services, and I thought that I really wanted to work with either at-risk teens or with kids who have addiction issues. I drank a lot and did a lot of drugs in college. So that was kind of the direction I wanted to go. But, like I said, you go through different personal stages, and at the time when I would've been developing that career I didn't have it in me to hear anybody else's problems or care about very many other people.
Have you thought about going back to social services?
Yes, I have, and actually I've been looking at the different options that are out there. But I took a little career change, and I went to one of these technical schools and learned medical coding. And I really like it; I mean, it's different, and I've always been interested in medicine. I could never be on the clinical end of medicine, but now I get to read all that's going on with everyone else and assign a number to it. But I really enjoy it, so we'll see what happens.
What would be the first thing you'd say to a person who's been newly diagnosed?
I hate to say this because this always sounds so cliché, but I do tell people this when they are newly diagnosed: You are not by yourself, and you're not going to turn around and die tomorrow. I'd let them know I'm there, I've been there for ten years. You kind of help them through the different things they're going to go through -- because it really is a process -- and kind of send them in the direction they need to be in. I do still believe that people -- especially newly diagnosed people -- need to go to a support group, they need to find the correct health-care provider, and they really need someone to talk to them and help them, for instance, disclose their status to certain important people in their lives so that they have that support. With this group, we have had members who were diagnosed less than six months ago, and we just say, you know, some of us have been diagnosed 18 years. So talk to us. We didn't have anybody to talk to, but we can help you through it.
My belief in helping a newly diagnosed person to realize there is a way to live with HIV, that it does not have to rule your life or become who you define yourself as, remains the same. I think I do a pretty good job of presenting the good and the bad faces and/or phases of having this illness. I am honest in answering their questions even if it may not be what they would like to hear. It is most important to allow the person time to "grieve" and move through the situation(s) at their own pace. Each of us lives this journey in our own way and through our own experiences.
Mindy can be reached via e-mail at [firstname.lastname@example.org](mailto:email@example.com?subject=Re: Your interview in 'The Body Features: Women & HIV').
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Home: Atlanta, GA
During her college years, Mindy was the stereotypical party girl: She drank frequently, experimented with drugs and had frequent and numerous sexual partners. Then she was diagnosed with HIV, and her life changed forever. Ten years later, Mindy was tired of having to travel cross-country to meet men and women like her -- HIV-positive heterosexual professionals in their 30s and 40s -- and decided to start her own social group in Atlanta. Mindy's group, Hetero Pos Atlanta, has grown far beyond her initial expectations with over 30 current members and at least one outing or activity planned for every month. "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."