The Balancing Act of Surviving HIV With Limited Resources

Harold R. 'Scottie' Scott
Harold R. "Scottie" Scott
Selfie by Harold Scott

Having lived with HIV/AIDS for twenty-five-plus years, I have seen and experienced many changes. I, like so many other long-term survivors, have learned to be creative when it comes to my everyday living. Many of us left the workforce years ago to live out our remaining years, never having planned to reach old age, yet, all these years later, we are still here.

As a farmer's son, I worked in the fields from the time I was big enough until I turned 18. My first "real" job was at a local manufacturing plant, a shoe/boot company, until it closed in the economic downturn of the early 1980s. Then, I took another manufacturing job, and I remained there until my HIV diagnosis in 1991 caused me to rethink my future, as I was given a prognosis of five, maybe seven, years before I would succumb to the ravishes of AIDS.

At a time and place when limited treatment options existed for HIV, I, like so many others, did not expect to live long enough to see the next year, much less the next decade. This, along with the overall stress of hiding my HIV secret while living in a very rural part of Tennessee, led me to leave the workforce in July 1993, cash in my 401K and swallow my pride by going on disability. As my T-cell count dropped into the 175 range, I was anticipating the sudden downward spiral to death that I had witnessed with so many.

During this time, I learned that living on a limited income (less than $1,000 a month) was a great balancing act. After getting my initial diagnosis, I once said that those of us who were infected might be broken by the time our HIV/fight was over: Broken mentally, financially and spiritually, as we did what we had to do to survive. Part of this was a process of grieving for ourselves, much like the process we experience with the death of friends or loved ones.

As new and less-toxic drugs to combat HIV/AIDS came to be, bringing so many back from the brink of death, the possibility of living beyond our means caused mixed feelings about having left the workforce and thoughts about if and how we might go back and maintain a full-time pace. Would we be treated differently due to our infection? Would our work insurance cover our treatments? We or, at least, I had been hesitant to use my insurance before leaving my job for fear of being found out.

Now that I and many others have lived with HIV for twenty, thirty or more years and are still out of the workforce, doing better but perhaps not well enough to maintain a forty-hour work week, are we willing to take the chance of losing much needed benefits that we have come to depend on? I have discussed this with other long-term survivors, who, like me, feel "stuck" in the system. We feel guilty for having survived so long, having resigned ourselves to a certain AIDS-related death.

Truthfully, I never expected to live this long with HIV, which developed into AIDS some years ago. At times, I feel I am a burden on the health care system, social security system and other resources I access as a person living with AIDS. As someone who has long outlived my 1991 prognosis, I never expected to have to "budget" my life with a limited income. I never expected to have to swallow my pride and accept what many who look at HIV from the outside see as a handout. I have seriously considered attempting to return to the workforce, but I do not want to jeopardize the benefits that have allowed me to live with AIDS as well as I have for twenty-seven years.

I suppose this is what I meant by being "broken" by HIV/AIDS. I am not broken to the point where I cannot survive, but it has affected my sense of pride, as I had been very independent prior to my HIV diagnosis so many years ago. I also face questions from those who look at me and ask why I do not work, as I am too young to be retired and HIV/AIDS is now a manageable, chronic disease that allows people to continue in the workforce -- not something that should prevent me from contributing to society via employment. Trying to "justify" my situation pulls me in many directions.

While the news of a "cure" is often a news story, and a hopeful story at that, those of us living with HIV/AIDS have to take into consideration the long-term effects of the drugs we take to get us to a cure. I have often wondered what I would do if there were a real cure for AIDS, as nearly thirty years of my life have been spent preparing to die -- at least in the earlier days of my diagnosis. As a now fifty-something man, I am truly grateful to still be alive. However, with this comes the realization that perhaps I could, or should, have reacted differently to the news that I was infected with HIV. Looking back, I would have likely stayed in the workforce to maintain some kind of financial stability. Of course, hindsight is 20/20. Who would have thought I would still be here, all these years later? Certainly not me.

A long-term survivor once said, "Had I known I would live this long, I would have taken better care of myself and planned a bit better for my future." Another said, "I have been expecting to die before I should, so much so that I have forgotten to live." Both of these people have since succumbed to the effects of AIDS, yet, I'm sure many of us still feel this way. Trying to live with limited resources to cover the everyday costs of living is stressful. I suspect I am not the only one who, while being grateful to still be alive, struggles to balance his health with the uncertainty of being a long-term survivor. Perhaps those newly diagnosed find themselves in a similar situation, as well.

Learning to live with HIV/AIDS and navigating the system becomes a full time job, and one for which we must make tough decisions as we move into our golden years.

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Read Harold's blog, Positive and Beyond: A Rural Perspective.