The Long-Term Survivor Dilemma


February 14, 2011

“Nelson, what am I going to do?”
This sentence is part of a conversation that I seem to be having everywhere I go with my seminars — one that manifests from a communal concern that many of us are sharing as we age as HIV long-term survivors.
A long-term survivor and activist friend of mine in San Francisco sat down with me for dinner and shared his fear of financial doom as he gets older with HIV. Like many of us, he left his career over 15 years ago due to HIV-related disability during years when we thought we had little ahead of us. As years went by, he became part of the large group of us who were committed full time to getting healthier again. Overcoming side effects, fatigue and other issues became a full-time job for years. Thoughts of replacing this full-time self-care job for a remunerated one never crossed our minds. Short-term goals were all we had for years.
With the advent of friendlier drugs and long-term virus suppression, many of us are confronted with a dilemma faced by few healthy people our age. Fear of financial doom in old age has replaced the fear of death that was part of our psyche for so many years.
Many people with HIV on permanent disability struggle by on less than $1,000 a month to pay all their bills. Others who get payments from private disability policies from their last job will lose them when they reach age 65. But who thought we were going to live to be 65 anyway!?
“Nelson, I am afraid to live to see my 80s and be a broke old man.” “I would like to make money but am afraid of losing my disability and health care.” “I am 57 and have a 16-year vacuum in my resume.” “Who is going to hire me at this age, especially now in a recession, even if I tried to do what I used to before disability?” “If I did get a job, I am not sure if I can hold it with my frequent bouts of fatigue.” “Is my fatigue related to not having a full-time job?” These sentences come from different mouths connected by a communal energy that is bursting to be expressed, but too ashamed to admit it.
As lucky survivors of a whole generation eroded by death, most of us are looking forward to a full life while searching for clarity and courage to regain financial security as we age with this disease.
In my PozHealth Yahoo group of over 3,200 people, most of us have lived with HIV for over 15 years and are aging with HIV. Some of us have only gotten to an undetectable viral load in the past three years. A few are still struggling with multidrug resistance. We often discuss obscure back- to-work programs that are scattered around the country. Some mention disability back-to-work programs like PASS or a trial work period to try to see if one can hold a job before getting out of disability. Most people’s denial, confusion, inertia, fear of future health issues and/or just plain lack of trust in the system have been barriers to accessing these options. Some now stand on a cliff with a halting courage, poised to jump into the unknown.
Most of us have learned that a life purpose is key to health. Some of us have opted for reinventing ourselves without losing our benefits by being volunteer activists, writers, advisory board members at research sites, going back to school while strapped for cash, or doing cash-paying odd jobs for which many are overqualified. Most wonder how or if this work can lead to skill building or networking to ready us for the jump.
As we speak more about the science related to aging with HIV in conferences everywhere, the communal anxiety of surviving and aging with HIV is not addressed.
The social aspects of surviving HIV while living under national poverty income levels and with fragile medication access through financially troubled ADAP systems need to be addressed much like we address access to care and scientific research in HIV.
This is a great opportunity for large nonprofits that are now losing their funding. They may want to redirect their missions to empowering those of us who want to become part of a financially productive work force. Survivor training programs that coach people about their options while addressing their anxiety of the unknown are desperately needed.
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