Five HIV-positive heterosexual men open up about sex, stigma & finding their voice
by Chip Alfred
Men who have sex with men—we all know this group bears the heaviest burden of HIV in the U.S. But what about men who have sex with women? Why aren’t there more resources out there addressing their issues—awareness campaigns, social networks, support groups, public forums? What is it like for a straight man living with an illness that’s historically (and continues to be) associated with gay men? In a candid roundtable interview, A&U asked a group of heterosexual men across the country why we don’t hear more about or from them, and they actually had a lot to say. Are straight men the forgotten group in this epidemic? What you’re about to read is a snapshot of their perspectives—their fears, their pet peeves, their hopes for the future—straight from the heart.
Rev. Chris Kimmenez, fifty-three, is a pastor and clinical psychologist in Philadelphia.
Edward Lowry, fifty-four, is a certified mental health/recovery peer specialist in Philadelphia.
Joshua Middleton, twenty-four, is a licensed bail bonds agent and blogger in Murrieta, California.
Steven (not his real name), thirty-three, is an IT professional in Portland, Oregon. He agreed to be interviewed for this article if we agreed not to use his name.
Mark Peterson, forty-nine, is an HIV linkage coordinator in Detroit.
A&U: Describe your life leading up to and after your diagnosis.
Chris: Prior to diagnosis I was a drug-addicted combat veteran with a criminal record and PTSD. After diagnosis, I began seeking treatment for not only my HIV but counseling for my addiction and PTSD. I have been clean since 1995 and undetectable since 1996. There were some relapses and setbacks, but there was a fairly steady progression. My wife, who is HIV-negative, and I started a church focused on people in recovery, people living with HIV and other chronic health challenges. We recently celebrated thirty years of marriage.
Joshua: When I was younger, I struggled with substance abuse, specifically crystal meth. I had one night stands and visited brothels in Tijuana. I didn’t always use protection and to this day I don’t know if it was my ex-girlfriend or another girl who infected me. I was a kid who grew up much too fast and didn’t get a chance to enjoy something we can never get back, our youth.
How did you deal with finding out you were HIV-positive? Have you learned how to handle it better?
Edward: I made them take the test three times. I refused to accept it and denial was the only way I knew to deal with it. Today is different. I realize that HIV is an immune deficiency, not a moral deficiency. Today I am not just living with HIV; I am living in spite of it. I am thriving with HIV.
Mark: It took me about five years to come to grips with living with HIV. When I was diagnosed, they told me I probably had three to five years to live. After a fog of depression and self-destruction, I slowly started to give back to the programs that helped me out. I began working in HIV. From my first days as a volunteer, I knew that the best thing I could do with whatever time I had left was to become an advocate and activist.
Chris: In the beginning it consumed my identity. Twenty-five years later it is part of who I am, but my life is so full that on many days I don’t even think about it.
Joshua: When you’re battling an enemy, you want to know what you’re up against. I studied HIV to know how to prepare myself. I found a support group on Facebook called International Group for People Living with HIV/AIDS and Those That Love Us. It has been a pillar of support and has thousands of members living with HIV/AIDS from all over the world. I think that creating a support network of both those who are positive and negative is so essential. That sense of unity helps me know that I am not alone in this fight.
What are some of the challenges you face as a straight man living with an illness that’s often been identified as a gay man’s disease?
Mark: The first was having to deal with homophobia. The next was having to deal with people for whom the concept of a straight man with HIV was either threatening the reality that women can pass HIV to their male sex partners, or that I was somehow a closeted gay man or an injector.
Steven: I can count on one hand the number of friends I’ve told and I’ve been very selective with those people. I don’t feel comfortable talking about it in social situations for the most part. I feel like this wouldn’t be the case if I were gay. I believe HIV is something that is discussed often among gay men.
Edward:The main challenge is stigma—not only around having done something offensive or indecent to get HIV in the first place, but as a straight man there is always that extra aura of disbelief and stigma around my “real” sexual preferences or experiences.
Has it complicated your interpersonal relationships?
Edward: I was an injection drug user who shared needles with a woman who must have been HIV-positive. I didn’t want anyone to know. Not even my family, let alone trying to have a relationship with a woman. The fear of rejection stayed with me for a long time before I eventually met my soulmate [PWN-USA organizer and activist Waheedah Shabazz-El]. We were married in 2011.
Joshua: When I have spoken with women I was interested in about it, I found myself having to do a lot of educating. For most of them it’s the first time they have ever met someone who was “out” about being positive although they may know many who simply don’t know their status. It’s something in the straight community that is read about in a textbook—not heard from someone standing right in front of you. Whether you’re HIV-positive or negative, everyone faces rejection. We simply have one more reason to be rejected, an extra obstacle to overcome.
Steven: People can make insensitive jokes regarding HIV and I feel it would open up questions I don’t want to answer by confronting them, so I tend to leave them alone. I’ve tried dating poz women and that hasn’t worked. The people I found generally had more baggage or just the types of baggage I didn’t want to deal with. My more successful relationships have been with serodiscordant partners.
Talk about disclosing your status. Do you think there is more stigma being a heterosexual man?
Steven: I generally choose not to disclose my status. When I date I put off disclosure for a variety of reasons. First and foremost I want people to get to know me for who I am before this fact gets thrown into the mix.
Mark: When I disclose my status, I wait about five seconds and begin to answer the question I KNOW is coming, “How did YOU get it?” Then you can usually tell what the other person is thinking. It’s only a few seconds, but it’s always there—the incredulity space, the judgment zone.
Joshua: Sometimes a woman might look at me as if I am somehow “unclean” simply for being positive or that I live a very promiscuous lifestyle and have slept with every girl in town. The stereotypes that are imprinted in their brains come to light when a straight man discloses. I find myself having to start from step one when what should be important is getting to know each other on many other levels besides simply a medical condition. It often feels like a record playing the same song over and over.
Edward: Communities of color are overwhelmed with so many social and economic challenges. Then along comes HIV. HIV is like peeling an onion—yet another layer of something else we would rather not have to deal with. These communities are slowly learning how to support those who disclose their HIV status.
Do you think heterosexual men are the “forgotten group” or one of the forgotten groups in this epidemic?
Mark: I’m a white straight man. I have amassed more than my share of unearned privilege in our society, so I’m not going to take on the role of the marginalized one. At the same time, yes—it IS harder for us. Support groups almost never exist. They try to put us in with women (women who see us as the guy who infected them) or tell us that our sexuality doesn’t matter. We’re still sexual and sensual men. We also don’t have a sense of community or brotherhood like the gay community before us.
Joshua: The world can’t seem to accept the medical facts that there are many of us who are straight men living with this virus. Part of it is the lack of hetero male activists willing to stand up and say, “Yes, I am HIV positive and heterosexual.” People need to realize that love is love. HIV doesn’t care what you are or how you categorize yourself. It does not discriminate and we should not either.
Edward: Heterosexual men living with HIV are a population in this epidemic that needs to be counted, serviced and allowed to give input to help end the epidemic. It’s really hard when you feel there is nowhere for you to fit in, but you still have HIV.
So what needs to change?
Joshua: We need to unify and demand that every voice be heard. Funding is not an excuse for ignoring a group of people. Eventually that low-risk group if continually ignored can grow into a high-risk group. We need to be in the schools, jails, HIV conferences, and anywhere there is an ear willing to listen.
Edward: At the federal level there ought to be inclusion in research and studies to track the trauma connected to heterosexual men living with HIV as well as identify the service gaps. At the grassroots level we need to come together to alleviate internal stigma by supporting and holding each other up and address the external stigma by being visible and developing ourselves as community educators and public speakers.
Chris: We need to stand up and advocate for ourselves. We need to push ourselves into the room and take a seat at the table.
Do you feel that being an HIV positive heterosexual man has held you back in your personal life journey? Has it helped move you forward in any way?
Chris: Since I got clean I haven’t let anything hold me back. This has made me even stronger and more determined to do what God has called me to do. I am too busy living to think about dying.
Mark: I believed what they told me at first—that I would die soon. I gave up thinking about going back to school. I gave up my dreams of being a teacher and a coach. Even now, more than twenty years later, can you imagine how a community would react if their child’s history teacher and flag football coach “came out” as HIV positive? I also believed for too long what I heard in public health structures: that I was a target, that I was a consumer, that I was a cog needed in their search for funding, but NOT an essential voice in the process.
If you could wave a magic wand and be granted one wish for straight men living with HIV, what would it be?
Edward: That heterosexual men living with HIV gain the support and courage they need to come out, speak up and provide input to the response to ending the HIV/AIDS pandemic around the world.
Joshua: It would be for us to be more vocal when it comes to activism. We can’t continue to sit on the sidelines and just expect things to happen. Let’s make them happen.
Mark: For us to no longer look outside ourselves for our support, leadership and advocacy. At the same time, have others accept our self-advocacy as empowering to us, and not threatening to them.
What is your outlook on life and living today?
Chris: If we choose to we can lead full, productive, satisfying lives with this disease and still maintain our identities as heterosexual men.
Joshua: I think this virus has shown me that despite whatever you go through or no matter how many times you think you’ve hit rock bottom, there is always that chance to pick yourself up. Getting diagnosed with HIV had a very special way of showing me the true meaning of life.
Chip Alfred is an A&U Editor at Large based in Philadelphia.