Diagnosed March 15, 1985, Mark S. King has been managing and living with HIV for nearly 40 years. Much of his work as an HIV/AIDS activist and writer is about sharing his story and his experiences to address the HIV epidemic and its current disproportionate impact on Black and Latine men, cisgender women and transgender women. Increasingly, he is expanding his advocacy to explore and amplify the intersection of aging with HIV.
We sat down with Mark, based in Atlanta, for an interview in honor of National HIV/AIDS and Aging Awareness Day to talk about his life and preview his keynote address at the upcoming HIV & Aging Summit called De-Siloing Aging, HIV, and LGBTQ+ Services: A summit on new possibilities happening Tuesday, October 1st – 2nd hosted by Pride Action Tank.
How do you view your status now versus when you first got diagnosed?
When I was diagnosed in 1985, HIV was a death sentence. I certainly had a lot of evidence to show me that; it was not only in pure statistics, but in the lives and deaths of the friends that surrounded me. There were no medications. There was not really any research going on. We truly felt like a forlorn community of people doing our best trying to live with HIV.
I had no reason to believe I would still be walking and talking all these years later. So many of us who are long-term survivors live with a sense of gratitude. I'm very grateful and very joyful to be living and contributing to the story as more layers continue to be added to this story of HIV.
Long-term survivors of HIV have always been the guinea pigs – even today. Can you talk about your experience with that?
When I was diagnosed with HIV, ‘well Mark is HIV positive. There are no medications. I wonder what will happen. Let's find out.’ As new drugs were introduced, ‘now Mark is taking this new drug. I wonder if he'll live or what the side effects will be.’ In other words, they were just waiting to see what would happen to people like [me]. The new medications happened in the 90s and then suddenly we got a lease on life.
Now Mark is aging well into his 60s. ‘What will happen to him now? What advanced aging problems will he have that are different from others who are aging normally?
Through the generations we continue to be the guinea pigs. They continue to look at people like me and wonder what will happen to them now, and I am resigned to that. I might even be a very grateful for that, because they're going to learn things about my life, my aging, and my death that will help the next people that will help the next people. I'm more than OK with that. I'm grateful for that.
What challenges do you face being HIV positive and aging?
I don't know if I'm always getting the best, most informed advice about what to do pharmacologically. For instance, I am now taking medications related to my aging, cholesterol, prediabetes and erectile dysfunction. Everything I'm being given, it may or may not mix well with the HIV drugs that I'm also taking and that also sometimes get mixed around. It's difficult to find a specialist in one of those silos that is also well informed in all the other silos to which I belong. Sometimes the doctor that's following your HIV meds is not paying a lot of attention to what's going on with those with those other medications.
A less talked about, though just as important, issue long-term survivors are facing when aging with HIV are the psychosocial issues and mental health challenges. You recently wrote about this in a POZ Magazine piece called When Survival Ends – can you talk about that?
We are now, as long-term survivors, facing our own mortality, kind of a second time. The first time I faced my own mortality, I was in my 20s and attending my closest friends' funerals. Some of them died in my guest room and I had a front row seat to mortality and figured that my own was quickly approaching. When you have an experience of something like that, you're a little haunted by it.
But then I've had 20 or 30 more years to kind of move past that and have a full and rewarding life. Now, however, I'm at the age where it's perfectly normal to suddenly be confronted with your mortality again. And I have friends my age or older who are dying, and I haven't had to face that in a long time, and it brings up a lot of past traumas.
I thought I escaped somehow. I had escaped mortality once and here I am faced with it again, and it's bringing up a lot of stuff: Did that experience in my younger life prepare me to go through this again or not? Or is it just as mystifying and terrifying as it was the first time around? Or what practical lessons did we all learn as long-term survivors that we should be sharing with community at large?
I'm much more prepared from the practical standpoint. I know what it means to hire Hospice care and at what point that should happen. I know the different documents that I should have on hand: Durable power of attorney, medical power of attorney, living wills. I know how important those things are. From those practical standpoints, I am better prepared than maybe the average person. From an emotional standpoint, I am a little traumatized by my past and by what's happening in the present, and the fact that maybe I don't feel any more equipped now.
What would you wish you could ask a long-term survivor of HIV when you were first diagnosed? Or what would you tell someone who is newly diagnosed with HIV?
Is it okay to freak out? I say that because what I overwhelmingly hear from people today who are newly diagnosed is that the first reaction of well-meaning people is ‘Oh you’re going to be fine. You're positive. OK. That's too bad, but you're going to be great - there's all these new medications.’
While that may be true and it is true if you have great insurance, if you can afford the copays - there's a lot of ifs connected to that - but let's say all of that's true: it's still a major life event, and if you need to freak out for a while, if you need to hold a pity party, you are entitled.
Because beyond the medical, clinical aspects of this, you are going to be socially marked and stigmatized for the rest of your life, probably at least through the rest of your dating life. There will be “no”s, rejection, ignorance, and stupid questions. There will be a lot of things that you have to deal with now as a person living with HIV; that's a door you're walking through that you cannot walk back from.
If you need time to grieve the fact that you are no longer negative, with all the rights and perks that come with that, that you are now a person living with HIV, with all the social stigma that comes with that. If you need that time, take it. Freak out. Feel sorry for yourself. Sit in bed. Eat bonbons - whatever you need to do, but don't do it too long.
Very soon thereafter you're going to need to put on your big boy or big girl pants and get back to that doctor and come up with a plan and then start to enjoy the rest of your long, meaningful, healthy life because you will have one.
How did you react when you were first diagnosed? How did you keep fear at bay, or what stigma did you immediately experience?
In 1985 I lived in West Hollywood, CA. So, one of the epidemic epicenters of the epidemic and largely gay, so you would think that I was in a safe cocoon of like-minded people and that's not true. We were all scared to death and with fear comes stigma, ignorance, and discrimination.
You couldn't get a manicure in West Hollywood if they knew you were HIV positive. And a lot of those people being kicked out of their apartments were kicked out by their gay roommate. We were all scared shitless.
It is important to know about what I was dealing with then, but also it informs how I feel about things now. A lot of that ignorance that I talked about when I say if you're positive, you're going to be socially marked and stigmatized - a lot of that is happening from people who are simply afraid, and they may be also ignorant. Willful ignorance is not acceptable. However, you may simply be ignorant about what it means to be HIV positive and need to be educated.
There is still a lot of education that needs to be done today, and stigma still exists around being HIV positive. Why do you think that is the case?
Fear is a powerful thing and even today with all that we know now scientifically and medically, with PrEP and untransmittable = undetectable (U = U), I think that we wish everybody would get this message and internalize it and understand it so that we would stop being stigmatized as people living with HIV and people would not stop being afraid of us, right? That's not going to happen overnight.
We have had 40 years of abject fear of dying and mortality and terrible, terrible news reels of people with marks all over their bodies - very frightening stuff. Even as medicine has gotten better, my sense of fear over what I've been seeing on the news and among my friends for the last, however long, is too great for me to overcome that and just naturally feel at ease. I believe it's going to take another generation, at least, for that information (like PrEP and U=U) to be really absorbed enough so that people can make informed choices without fear.
I think your question was, what did it feel like then? Well, the way it felt then was complete terror. Waiting to die. Going to funerals and doing a lot of drugs. I self-medicated with anything that could immediately help me not think, not be present for the horror movie that I was living through, it was more Xanax and more cocaine that seemed to work.
I can talk a lot about the trauma of what it was like in 1985, and I understand you're curious about that because it is part of our collective history, right? But I really try to stay rooted in the here and now. Long-term survivors like me with what we went through, we are a haunted people; we live with that trauma and it's buried and maybe we've come to terms with it, but it resurfaces in unexpected ways: maybe through addiction, escapist behaviors of some sort, or maybe through a finding out that a friend has died under perfectly typical circumstances, but it brings up all that stuff.
In Illinois, we are working on a plan called Getting to Zero Illinois with the goal of ending the HIV epidemic in Illinois by 2030. What comes up for you when you hear that?
The HIV epidemic is a social justice issue. It has to do with access to health care, to prevention messages, and we know that our public health systems – whether its Chicago, Atlanta or Dallas – are not equipped or well-funded enough to penetrate the populations that need this most. Can we end the epidemic among gay white men like me? Yeah, we can – and we largely have.
One of my great regrets as a community is seeing the exodus of white gay men from the playing field once we got what we came for: research, medication, care and prevention. Now we are happily gay and married in the suburbs, and we are not involved in this fight anymore. And who we left behind: Black trans women, African American men and women. People who are of a socioeconomic status where they for whatever reason can’t access prevention messages, healthcare, or don't have transportation to get to the clinic.
I have a friend here in Atlanta who died about 10 years ago of AIDS because he didn't have a car, so couldn't make it to his clinic appointments. When he did have a friend that would give him rides somewhere, he asked to be taken to the grocery store. Until we have addressed the basic social justice issues of equity then I don't think we're going to end this epidemic in my lifetime or any.
You mentioned the exodus of white gay men from the playing field – can you elaborate on what the playing field is?
HIV activism. Once again, communities of color who are poorer are left holding the bag and having to fend for themselves. I've often said that HIV activism is driven by those with the most to lose. White gay men, we don't have a lot to lose anymore, because we got the things we wanted and then we took off.
The people who are experiencing it the most right now - because of systemic racism and social injustices - don't necessarily have the bandwidth to be driving the fight because they are just trying to survive.
Yes, exactly. Just like my friend that didn't have a car. He had bigger fish to fry in his mind than making it to a clinic appointment. Unfortunately, he died of AIDS as if it were 1985 because he wasn't able to avail himself to all the great U = U stuff. I mean I love U = U and I'm so glad for the campaign. I'm glad that we're pushing those messages, but I also compare it to a parade passing by. Not a lot of people are sitting on the sidelines, and they can barely see the parade or hear it from their basement apartment, from their shelter, from their prison cell, from all these places that prevent people from getting to be a part of that parade. Sometimes I feel like we're celebrating something a little too fervently when we have failed so many people.
Exactly - if someone is trying to figure out where their next meal is coming from, they are not going to be focused on picking up their medication, let alone attending an advocacy meeting. Whereas maybe white gay men in the 1980s had at least some of those things already in place - they had homes and jobs, and certain power being white men.
We must address the HIV epidemic through equity. 6000 to 7000 people every year in the United States die of AIDS, with the majority being Black people. I wrote an essay for POZ Magazine called The Truth about the 7000, and it goes into this very topic. Why are there still so many deaths? Why is there this parade going on for U = U but all these people are left behind.
I know what I look like has everything to do with the fact that I'm sitting here talking to you 40 years after I was diagnosed.
Achieving equity requires systems change, which in turn requires organizing and effective advocacy. It also requires centering the lived experience of people living with HIV, especially Black and brown people most impacted by the HIV epidemic. Join us at the De-Siloing Aging, HIV, and LGBTQ+ Services summit on Tuesday, October 1st – 2nd to hear from people living with HIV and aging. Sign up here: De-siloing Aging, HIV and LGBTQ+ Services: A Summit on New Possibilities - Campaign (aidschicago.org)
