Out On The Couch
HIV Long Term Survivors: Time to Thrive
How do you learn how to live when you spent most of your young adult life thinking you were going to die? This question resonates for many of my gay male identified clients who are HIV long term survivors (HLTS). For someone to be considered an HLTS they must have survived twice the median age of HIV survival (Ironson, Solomon, Cruess, Barroso & Stivers, 1995) which would mean that they would have received their HIV diagnosis by the late 1990’s at the latest. As these individuals are approaching a time in their lives where they might otherwise be looking back and celebrating the life they’ve lived thus far, instead they are struggling just to achieve activities of daily living. Planning ahead and finding new goals for the second half of their lives seems nearly impossible. Many of my HLTS clients and friends experience depression. This can be confusing for clients and therapists alike, as one might think to survive an epidemic is a great feat. But in reality, while they survived, many of them have been unable to thrive.
Most of the conversations amongst clinicians and physicians that include the HLTS community are focused on the long term physical health effects of living with the infection. Organizations like the Well Project, a non-profit dedicated to those who are HLTS, have an abundance of resources for physical health, but are lacking when it comes to mental health (“The Well Project”, 2019). Thanks to time and research, we now know plenty about the long-term effects of taking medication as well as the risks of complications from other infections that disproportionately affect older individuals living with HIV. The mental health disparities and unique quality of life concerns the HLTS community faces are just as important as the more commonly discussed topics of survivors guilt, political movements (such as ACT UP), and grief. Information beyond these topics in academia, research, and in talk amongst clinicians is difficult to find or outdated (Ironson et al., 1995). The existing research is mostly focused on individuals who were diagnosed in early childhood/adolescence (Benton, Kee Ng, Leung, Canetti & Karnik, 2019).
Many HLTS were diagnosed in the early nineties, immediately prior to, or in the early stages of, the development and distribution of the highly-active antiretroviral therapy (HAART) medications. At that time the HIV diagnosis was a death sentence. I’ve heard first-hand accounts from clients of how common it was for them to go to two to three funerals a day and how it wasn’t a matter of if they’d ever be diagnosed themselves, but when. Lives weren’t planned in terms of months or years, they were planned in days and moments. I’ve heard stories about how emotionally dangerous it was to fall in love or make a friend because they could be gone in the blink of an eye. Many of these individuals sold their life insurance policies, spent all their savings, quit school and their jobs and did not financially plan for the future. As medications started to work and these individuals began to survive, they emerged from the epidemic with no future plans, few living loved ones, psychological trauma, and very little sense of purpose.
A lot of the HLTS clients I’ve worked with are knowledgeable about trauma, and very aware of what their experiences have done to contribute to their feelings of depression and hopelessness. Many of them are tired of telling their stories and being met with sadness and pity They are sick of being thought of as a cautionary tale for the younger generation, or being told how brave they are. However, that’s what many people have told me they hear and receive from other therapists. In my experience, these clients aren’t coming to therapy to grieve or to explore their shame. Instead, they come looking for help on how to move beyond their trauma, learn how to take risks, and lessen their fear of the world in order to have the courage to actually live.
What does it mean to not “live,” and how does this present in therapy? Gay men who are HLTS need a space to process and speak out loud about the unique worries and fears that come with being HLTS. A lot of my time with these clients has been spent exploring the fact that they don’t know how to make friends without fearing they’ll lose them, and thus they stay inside all day rather than go out and take a risk. Some of these clients don’t understand the basics of developing trust, or using good judgement. I’ve heard how many of them don’t have the confidence or ability to get a job or take up a hobby. So they file for SSI, on which they remain their entire lives. This can contribute to their feelings of being less than, having little direction, or asking for “handouts.” Another common theme among gay men who are HLTS is jealousy toward younger generations, and newly diagnosed individuals living with HIV because they don’t have the same fear of failure. For HLTS men, failure meant death.
With that notion, how can we address all the topics mentioned above while simultaneously allowing the clients to sit in their “failure” and process safely? From what I’ve learned, just allowing clients to speak these statements out loud and meet them with complete acceptance is sometimes enough to start the process of healing. We must be careful not to minimize their experiences or compare them to other communities that experienced great loss, because what HLTS individuals are going through is completely unique to them. I’ve heard from clients that the second they hear a therapist normalize what they’re feeling, rehash the trauma narrative, and promise their lives will change with trauma-focused work, the client stops feeling seen and loses hope in the therapeutic relationship. What gets them to open up is hearing from a therapist that while what they are feeling is awful, there is a possibility to change their lives and move forward one step at a time. Trying to imagine it’s possible to overcome depression’s hurdles can be overwhelming because these clients never had the opportunity to feel safe and stable at any time in their life. These clients come to therapy wanting to learn the basic skills of living, not to keep revisiting their trauma narrative.
The HLTS community is growing every day. The life expectancy for individuals living with HIV is now the same as those who are not. But while we’ve been so focused on how to help them survive physically, we’ve neglected the accompanying emotional pain and turmoil that contributes to the loss of basic life skills. I encourage you all as mental health clinicians to consider an integrative approach, such as using a mixture of solution-focused and psychoeducation instead of just strictly trauma based work in treatment for this unique type of survivor. By exploring different approaches we can center on rebuilding life skills one step at a time. It’s time we help people who are HLTS thrive.
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Benton, T., Kee Ng, W., Leung, D., Canetti, A., & Karnik, N. (2019). Depression among Youth
Living with HIV/AIDS. Child And Adolescent Psychiatric Clinics Of North America, 28(3),
447-459. doi: 10.1016/j.chc.2019.02.014
Ironson, G., Solomon, G., Cruess, D., Barroso, J., & Stivers, M. (1995). Psychosocial factors
related to long-term survival with HIV/AIDS. Clinical Psychology & Psychotherapy, 2(4), 249-266. doi: 10.1002/cpp.5640020408
The Well Project. (2019). Retrieved 29 August 2019, from https://www.thewellproject.org/