The Psychology of Survival: what happened after AIDS
Prior to the advent of the antiretroviral (AVR) medications, gay men who were diagnosed with HIV/AIDS were confronting almost certain death. Now, with relatively easy availability of AVR medication, they confront a life that will be devoted dealing with a chronic illness and any potential lingering medical and emotional complications. Many experience shame, grief, isolation brought on by stigma or self isolation because they have chosen not to disclose.
They have survived not just an individual illness, but a community-wide epidemic that killed friends, lovers, neighbors and even members of your family. The impact of AIDS, both in succumbing to it and surviving it, can be every bit as great on the psyche as on the body.
Silvio Machado, a PhD student of Psychology at Saybrook University provides a vivid research based narrative on the existential dimensions of the lives of the men who have survived. His article, “Existential Dimensions of Surviving HIV: The Experience of Gay Long-Term Survivors,” is published in in the Journal of Humanistic Psychology.
Machado draws on his clinical experience along with the existential givens that are based upon the theories and practice of James Bugental, Rollo May and Tom Greening, to provide insight into the benefits of existential-humanistic psychotherapy with long-term survivors.
The work of helping another be present in a life that they assumed they would not have involves diving into their sense of life and death --- into their existence. This existence, according to Machado, is tied to the givens ... those aspects of life that are always present. They are: embodiedness, isolation and separateness, freedom, choice, the potential to act, meaninglessness, death, and finitude.
These things are true for all of us – hence they are givens – but how they play out in a population, and in individuals, as unique as the one’s Machado examines gives us additional insight into human behavior.
Embodied or being in our bodies is a fact of living. Survivors must be in their bodies while dealing with a complex disease that inflicts enumerable physical side effects from HIV/AIDS as well as the cocktail of drugs that are keeping them alive. They must be aware and present in their body and address, whether they like it or not, how the disease is a part of all of it.
Isolation and separateness
Isolation and Separateness is a common and painful experience for many survivors. Machado describes this existential given as “salient” in that despite having the support of family, friends, lovers and community there is still a sense of being isolated from others because their experience of the disease; this experience is colored by “memories from the height of the epidemic – of funeral processions, wasted faces, and unrelenting loss – are solely the individual’s to be experienced in isolation.” This is being alone but not alone – or existential isolation. Add to this the social isolation brought by the stigma of being HIV positive. It’s a place of loneliness--of existential and social isolation.
Freedom, choice and the Potential to act
We have the freedom to choose act in our lives. Of course that freedom is based upon what we are capable of doing within the limits of our own abilities and the world around us. We can’t fly without something to keep us from falling out of the sky – but we have the freedom to choose to make something (to act) that will keep us soaring. Through the given of freedom, gay long term survivors are free – but only within the context of their lived experiences of surviving decades of homophobia, major life changes, and HIV/AIDS. This freedom can be expressed through personal choice, they can chose and many have chosen to take the personal action (to act) of seeking care, taking the AVRs and in some cases informing others of their status.
The greatest question that many survivors have is: why me? Why did I live? What should do with my life? Seeking meaning in life in light of such loss and gain is a process that would be central to these individual’s choices to continue to take the AVRs or not.
Death and finitude
All of these choices, questions and searching for meaning are tied to the givens of death and finitude. Death and finitude are always present in their lives, whether through witnessing others pass on or as a specter hovering just around the corner. Machado weaves together the aspects of the existential givens with the experiences guilt and bereavement while focusing on how survival has had an impact on the lives these men.
This perspective of existential-humanistic psychology and psychotherapy can help therapists work with long term survivors allowing them to explore and discover meaning in their lives, to embody their disease, acknowledge and relieve their isolation and separateness, to live free while making choices and taking actions that hopefully help them understand the presence of finitude and death and most of life while living with HIV/AIDS.
-- Makenna Berry