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Dreaming A New Future: A Conversation with Long-Term Survivors

, by San Francisco AIDS Foundation

“What’s next?” That’s the question at the heart of a burgeoning movement of long-term HIV/AIDS survivors and allies. For people who lived through the devastating losses and unimaginable triumphs of the early decades of AIDS—many of whom never expected to see their 30s, let alone hit retirement age—what do the next decades hold?

Tez Anderson

Tez Anderson

If Tez Anderson and Matt Sharp have anything to do with it, the coming years will hold fierce advocacy, revitalized community, and gatherings that feel like home. Last year, filmmaker Anderson and longtime activist (and BETA columnist) Sharp launched Let’s Kick ASS, a San Francisco–based grassroots community group for people experiencing “AIDS survivor syndrome”—folks who survived the worst of the early epidemic only to find their lives had stalled.

Reconnecting isolated survivors, getting a seat at the advocacy table, and honoring the past while reimagining the future are all on the group’s agenda. As Anderson explains, “we’re dedicated to reclaiming our lives, ending isolation, and envisioning a future we never dreamed of.”

In this frank conversation—the first in a new BETA column for long-term survivors—Anderson and Sharp share their own experiences with AIDS survivor syndrome, tell why they have a bone to pick with champions of an “AIDS-free generation,” and share how kicking ASS is helping kick-start a new chapter in AIDS history.

Tez Anderson: We describe the symptoms of AIDS survivor syndrome as depression, personality changes, flashes of anger, survivor guilt, anxiety, insomnia, social withdrawal and isolation, hopelessness, substance abuse, sexual risk-taking, and lack of future orientation.

Matt Sharp

Matt Sharp

Matt Sharp: Yes, and a lot of people don’t recognize these as a series of symptoms. One of the things we’re trying to do with Let’s Kick ASS is to put a definition on this collection of symptoms and talk to people about it. We need to study this and put a name to it.

Anderson: And realize that it’s a natural reaction to such sustained trauma. For those of us who lived through the AIDS crisis those first 20 years in the ‘80s and ‘90s—that long, sustained trauma has a natural response. For many people, now that the crisis is over, it throws our lives into crisis. There’s a spectrum ranging from severe isolation to being completely unaffected. Everyone falls somewhere different and can go back and forth; there’s flexibility.

Sharp: What’s interesting is, when I first started talking with you about this, Tez, I had noticed some isolation issues with myself but I thought they were more situational. I didn’t realize that was probably a part of AIDS survivor syndrome. I’ve never really had any problem with most of these symptoms, just some mild depression and mild anxiety—but I have felt isolated. And that isolation can lead to severe depression and even suicide, which is what we’ve seen in our own communities and what has spurred us to take some action.

Anderson: One of the reasons we started Let’s Kick ASS was the death of Spencer Cox, who was an AIDS activist who stopped taking his HIV meds and died last year. It was so senseless to me: Here’s a person who had the resources to keep taking the meds and stay alive, yet he gave up? To me, it seemed more like a form of suicide.

And then several other people committed suicide—one man jumped off the Golden Gate Bridge, for example—and all were long-term survivors who were having a difficult time coping with life after such a long trauma.

Sharp: And certainly a lot of the suicides may have been situational, but I think we’re recognizing that there seems to be a link to long-term survivorship.

Anderson: The thing is, no-one is looking for a syndemic—a whole bunch of different things together. They say, “Oh you’re depressed? Take an antidepressant. You’re anxious? Take some anti-anxiety medications.” They never really get the sense that it’s related to post-traumatic stress, that there’s a larger thing going on that means something on its own, distinct from those individual symptoms.

Sharp: And our hope is that if someone can uncover the answers around this, then we can find some way to intervene.

Anderson: We all see people at various stages of “surviving survival.” How do they cope with life after having the expectation of dying? We’re talking about a whole generation of people who were told every two years for a decade, or two decades, that we were going to die. How do you pick that up and carry it into the future with you?

Sharp: And do that in a setting where you may have lost all your support? Maybe you’ve lost your networks, or your ability to pay for things after being on disability for so long. There are a lot of underlying things that go hand in hand with AIDS survivor syndrome

Anderson: There’s a need for psychological services for long-term survivors that recognize these symptoms are related to surviving something for this long. And it affects people who are HIV negative, too; this isn’t just about people who are HIV positive. It’s about anybody who lived through that much sustained loss and unprocessed grief—because in many cases, we didn’t have time to process grief. We might have been going to two funerals a week; no-one could process that, on that kind of scale.

Sharp: And when you think about the community that was first affected by AIDS, it was already a stigmatized community. Then you layer on all these other stigmas, and the post-traumatic stress just builds.

Anderson: When I hit on the idea that post-traumatic stress was related to some of the things I was going through in my own life—I had given up hope and was thinking about suicide—I realized something else was going on. I did some research and saw it as post-traumatic stress.

Sharp: You and I started talking about this a while ago, before Spencer Cox died and the suicides happened, and I think it’s interesting to see how we were kind of put in that situation by our system. We were assumed to be OK; we were, in many ways, left alone because we were physically healthy. It was all about the virus: “Your viral load is undetectable, so you’re going to be fine. Take the pills and go home; you’re going to be fine.” Well, for some people, maybe—but for a lot of us who had also gone through the early years of the epidemic, it wasn’t that easy.

One of my big bugaboos is that we’re not on the agenda right now. This group of people is not being taken care of, especially with these symptoms and syndromes we’re experiencing, so one of our big advocacy issues is to get ourselves back on the agenda. We are a part of the AIDS Generation and it won’t be over until we die. We want to be back on that agenda and not only address the psychosocial symptoms but make sure we are healthy until we die.

Anderson: For a lot of long-term survivors, all this “end of AIDS” talk feels alienating. An “AIDS-free generation”? You must mean the generation that comes after me. I know it’s optimistic and I know why people say it, but the reality is, it’s alienating. It feels like all those deaths, and all that rage and fear, and all that trauma and turmoil we went through don’t matter. It’s very discounting.

Sharp: And it’s fascinating that we had to bring AIDS survivor syndrome up—that it wasn’t brought up by someone else. This whole issue slipped under the radars of all the providers and “AIDS Inc.” and pharmaceutical companies. This was recognized by ourselves. That in itself tells you how we were left off the agenda from the get-go.

Anderson: We feel like the Rodney Dangerfield of the HIV world! [Laughs] We get no respect. But that goes back to our old days early in the epidemic, when we were fighting for everything; we figured it out for ourselves and then told the establishment what we needed. So this is old behavior for lots of survivors.

Sharp: We’ve always fought for ourselves, and we’ll continue to fight until we find some answers. And we help our own, just like we’ve always done.

Anderson: It’s empowering to me to do this. I know that a lot of the symptoms I was having of post-traumatic stress began to diminish when I started Let’s Kick ASS and got together a community of people who knew what I was talking about.

And the power of our town halls is amazing! When people come there, I see them from everywhere on the spectrum—from people who are thriving and doing well and still working (at 65 and 75 and sometimes even 80) to others who are barely able to get out of the house, and for whom showing up to an event is an event.

Sharp: As I said in the beginning, I didn’t experience a lot of the symptoms but did experience isolation. And once I started getting involved with Tez and working with a group of really dedicated, smart long-term survivors to plan these events, I really felt my isolation going away. So I think it’s working, simply what we’re doing right now in San Francisco.

Anderson: I think San Francisco is the canary in the coal mine. I mean, our population with HIV that is over 50—not all long-term survivors, of course—in San Francisco, it’s a substantial number. And the number of people who are showing up at our events and wanting to connect after being disconnected for a long time—there was a period there when the meds got better and people stopped dying and we all just retreated to take a deep breath, and now it’s time to pop our heads out of the sand and look around and say, “What’s next?”

Sharp: It’s an awakening. It’s really an awakening.

Anderson: And it’s exciting in so many ways. I think that we can make these next 20 or 30 years remarkable if we just put our minds to it.

Sharp: And there are ways that we could be a part of some of the answers to some of the other problems in HIV—like stigma, housing, and access to medical care and meds—by helping tell our stories and mentor younger people or people who are newly diagnosed. I think we have a lot of history amongst ourselves, and we can help a lot of people who are new to this.

There are so many things out there that are ready to be discovered with long-term survivors; we’re just now starting. We’ve been working with Let’s Kick ASS now for just six months, and already we’re building a new agenda for the new year. So it’s very exciting, and everybody should stay tuned and keep with what we’re doing. We’ll be there for the future.

Anderson: We will be there for the cure!

. . .

Inspired to learn more about AIDS survivor syndrome—and how you can address it in your own life and in your community? Visit Let’s Kick ASS online for news, perspectives, and resources, and check the group’s calendar for upcoming events.

Are you a long-term survivor? A member of the AIDS Generation? Let us know what you want from this new BETA column! Whether you are living with HIV/AIDS or HIV negative, we want to hear from you. Leave a comment below or drop us a line at beta@sfaf.org.


10 Responses to Dreaming A New Future: A Conversation with Long-Term Survivors

  1. arlene says:

    you becoming survivors from aids is wonderful news,it saddens me that you struggled all these years emotional trauma!!I hope you enjoy your life now and reach out to others..you guys look great!!!I had 2 brothers in the 90s who passed away from aids..i miss them very much!!!I know what you feel!im happy to know u guys are well and please enjoy your life and try put past behind you!!god bless and thank you for sharing!!!

  2. Jeff Hammond says:

    i was a client of the San Francisco AIDS Foundation and i have NEVER received such bad treatment from an AIDS organization as i received while a client there. i was told numerous times that i couldn’t get services because it would take services from a gay man who needs it.

    i left san francisco, moving to new mexico where i have never been discriminated against for being straight.

    i was infected july 29, 1979 from a blood transfusion. my wife and i were diagnosed june 10, 1984 with GRID, a diagnosis that follows me to this day. i was diagnosed with AIDS March 16, 1996 just hours before my wife passed away.

    I am a straight man diagnosed with Gay Related Immune Deficiency. and i NEVER got any support while living in san francisco.

    i plan on being here for the cure, despite the treatment and discrimination received while living in san francisco.

    i would love to know other long term survivors, but i refuse to subject myself to bad treatment just because i’m a straight man with a gay disease…

    • San Francisco AIDS Foundation says:

      Thank you for sharing your story and your feedback, Jeff. We’re sorry to hear you did not have a rewarding interaction with the foundation. We pride ourselves on welcoming anyone who walks through our doors, regardless of background, and if we do not have a service that fits their needs we refer them to another program or agency. We also have anti-discrimination policies that we strongly enforce. Acceptance and inclusion are values we hold dear at San Francisco AIDS Foundation. Please feel free to send us a private message at feedback@sfaf.org if you’d like to discuss your concerns further. And if you’re interested in meeting other long-term survivors, this online POZ Magazine forum might be helpful: http://forums.poz.com/index.php?board=20.0.

  3. Fraser Doke says:

    Good Day, I am Fraser from Vancouver BC.. I have been positive since 87, when it was a scary time for people who are told their positive and short life expectancy ..I saw a lot of freinds die have had several health problems over several years. Just last years had a full Liver Transplant, spent 5 months in the hospital , some doctors think the full liver transplant was do because of meds going through liver has been part of the problem.. Have a new outlook on life, I don’t drink,smoke,or any recreational drugs, sorta a born again vergin.. HahA.. now what to fight for housing for my freind that are seniors, and I don’t want them to back in the closet, cause they are older.. Most senior support groups, and housing is for straights which could be a problem.. We came out years ago and I personally don’t want to go back in the closet.. Or a number of my freinds.. Have any advice please give us insight and thoughts.. Cheers, Fraser..

  4. Valerie Branch says:

    This is such a poignant aspect of AIDS that has never, in my experience, been brought up. And to see this forum and conversation being started on a public scale is very heartening. I’m looking forward to learning more about Kick ASS!

  5. I have lived infected with HIV since 1984. I would never have imagined that I would be alive 30 years after diagnosis.

    I thought to myself the other day (for the first time since diagnosed) that I never planned a future; too busy trying to stay alive and/or, recovering from health problems and near death numerous times over the years. It almost seems all of a sudden, now here I am, having lived 30 years. I really don’t know what my future looks like, I haven’t ever planned for it.

    I was 32 when infected. I’m going to be 62 next month (March). For me, it doesn’t seem like there has been much time when I wasn’t dealing with a health issue. Although HIV is not a threat given my CD4 is 1200 and viral load undetectable since 1997, I have also had to deal with chronic health problems related to the side effects of the HIV/AIDS medications. And now, age related health issues.

    For years, I continually voiced silently, that I was tired, fatigued. Tired of not feeling well, trying to find out how to fix what was wrong each time a health issue came along. Tired of both the physical pain that often came with being sick and the emotional pain from worrying about dying and how that would affect those I loved. That and the emotional pain of losing to AIDS these 30 years all the people I cared for and loved.

    I have over these last year’s thought allot about what long term survivors have been through.

    I can see now there were times, when what was going on in me was to some degree, AIDS survivor syndrome. We have fought so long and hard in the fight against HIV/AIDS.

    Prior to today, I didn’t have a real name for it, other than it felt similar to what I thought people who have served in wars go through… post traumatic stress.

    My thanks to Tes Anderson, Matt Sharp and the San Francisco AIDS Foundation for this article.

    Bradford McIntyre, HIV+ since 1984

  6. Dwayne Bryk, HIV+ since 1980 says:

    All aspects of support, emotionally and psychologically, will remain paramount in my HIV/AIDS journey. Another aspect that needs to evolve are the physical outcomes that are emerging as a result of living with HIV+ for so long, the impacts of medications we’ve been consuming for almost as long, and well, just aging. I say this with the lived experience of recently being diagnosed with a rare blood disorder this past month, cryofibrinogenemia (essentially, a condition that clots my blood at 2.5 degrees celsius and lower). It was recently concluded that since onset (and nearly a year of ‘ruling out’ all other conditions that could create this condition) it could be determined that my long-term infection with HIV+, has played a determinant role in making this diagnosis. Research already knows, too, that tremendous stressors have not only been placed upon our immune systems right from the beginning, but also the stressors to vital organs. Combined with time and long-term survivorship, the effects on our bodies is now revealing itself. Sadly, I think that this is just the beginning now that science and research are able to collect vast and reliable data with long-term survivors. It is also my personal opinion that research in this area with further emerge as the population of long-term survivors living with HIV/AIDS becomes larger. For 32 years, I have lived with HIV+ and Bipolar Disorder II. In those years, I have been challenged (as many) with opportunistic infections. How could one NOT think about the long-term implications to our bodies, in this regard? I very much enjoyed reading your article–thank you!

  7. Mark Niedzolkowski says:

    Thanks Matt & Tez, it was nice to read through your conversation and see that there are more of us out here then we can easily see sitting at our monitors. Really glad you are organizing “Kick Ass”, if I can do anything to help just let me know. I know first hand just how debilitating long term survivor-ship can be.

  8. Vauban says:

    For me life as a LTS has been a living hell. The virus triggered numerous auto-immune issues and I live with HIV associated neurological disorders including chronic migraines, motor neuron dysfunction, sleep disturbances, hyperacusis, tinnitus and visual disturbances; none of which is psychological in origin. Death at this point is a viable alternative.

  9. Celeste says:

    Having HIV since I was @least 16, has been life altering to say the least. Now, at 46, I too am left wondering if all those years of fighting to survive, all the years of (continued) isolation, meds, illnesses (none directly linked to my HIV), near death situations & the general apathy from the public/friends/family/ASO’s (as they serve mainly the LGBT community & minorities)- has been worth me still standing here. Living on the brink, financially, for the past 11 years can really take the fight out of a human. I’m so very tired, tired of fighting, tired of the apathy, tired of putting on a smile because they really don’t want to know “How you’re doing” & especially tired of the continuous inflammation which has left my body a shell of what it used to be. It really makes even a Buddhist ask: “Why am I still here?”