I remember the day in 1986 when the social worker told me I had tested HIV-positive and had less than two years to live. I just had turned 26 four days earlier.
When I left the San Francisco Department of Health Clinic, the world was suddenly technicolor. Walking down the hill to the clinic seemed like Kansas; walking the four blocks up the same hill had become Oz. Everything was more intense. I later realized I was in shock.
In the mid-80s, San Francisco felt like living in a war zone. Young men died very quickly. I’d see someone who looked healthy one week, and within a few weeks, the local paper would publish their obituary.
After the diagnosis, I put all my goals and dreams away and began living for the short term. Over the years, I’ve lost track of how many friends have died from AIDS; it’s well into the hundreds. But at every funeral, when reading every obituary, I always thought I’d be next.
I later learned I acquired HIV in the summer of 1983. For decades I lived with one foot in the grave and one foot in the living. Death was always right there, waiting.
Thirty-six years later, I’m still here. Living in the aftermath of the early AIDS pandemic has been mentally and phyically traumatic. Many survivors live with the guilt that we lived when so many of our loved ones and community died. Survivor’s guilt is one aspect of something I’ve termed “AIDS Survivor Syndrome.” It describes the psychological ramifications that result from living through the HIV/AIDS pandemic. It is the realization that aging with HIV is as terrifying as the prospect of dying young.
I’ve always been on the frontier of AIDS. I was part of a trial for the first U.S. Food and Drug Administration-approved drug to treat HIV, which is one of the reasons I’m alive today. I am among the first group of people still surviving the AIDS crisis and aging with HIV. At every iteration, we’ve entered new territory, which brings unforeseen complications and also new opportunities.
Incredibly, science has seized upon these opportunities to develop new treatment options for people like me, and it’s almost unbelievable where we are now. Back in the 80s, when I learned I had HIV, I expected to live a few months; if I were diagnosed as a twenty-year-old today, I could expect to live into my 70s or older.
Because these advancements are so personal to me, I’m concerned that some policymakers in Washington are considering policies that could inhibit future investment in the type of innovation that saved my life. Often, we hear politicians talk a lot about cost-cutting, but I don’t think that they drill down and ask at what cost. I would ask that they consider my story when thinking through their solutions, and the stories of others like me.
Often, we hear politicians talk a lot about cost-cutting, but I don’t think that they drill down and ask at what cost.
If I could talk to my younger self on the day I received my diagnosis, I would tell him not to put his hopes and dreams in the garbage can. Aging with HIV has been the hardest thing I’ve ever done, but it’s given me a sense of depth and empathy I couldn’t have gotten otherwise. Three decades later, my life is filled with purpose and meaning. I’ve been married to a man I adore for 12 years, and I’m among a large community of fellow survivors that enrich my life.
It is a life made possible by innovation.
I hope that America will keep investing in future breakthroughs so that my story—of having lost hope only to regain it—can repeat itself thousands, if not millions, of times.
Tez Anderson is an award-winning, nationally recognized HIV Long-Term Survivor activist, writer and speaker who focuses on HIV Long-Term Survivors Aging with HIV. As the founder of Let's Kick ASS—AIDS Survivor Syndrome, Tez has been living with HIV since 1983.
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