For many years, a few of my friends and former colleagues referred to me as their “little green monkey.” Apparently African green monkeys, (genus chlorocebus) can be infected with SIV or Simian Immunodeficiency Virus (the version of HIV that exists among non-human primates) but never progress to disease. In humans, most people infected with HIV who do not go on treatment will progress to AIDS within about 7-10 years. I was an anomaly.
In 1992, I was told I had HIV and probably five years to live. Those five years came and went and little in my health changed. Then ten years and, still, nothing. Then fifteen years. Still healthy. I was the human version of a little green monkey. I had HIV but my body seemed to be handling it without medical intervention or treatment and the virus stayed in check and, luckily, I never progressed to having AIDS.
Towards the end of my sixteenth year with HIV, nearly into the 17th, my body began to wear down. I was working too much, traveling for my job 120+ days a year and not taking very good care of myself. Stress took hold and the virus took advantage. I became severely anaemic, began losing weight (unintentionally) and generally fell apart. By December of 2008 I had to start treatment; it was like being diagnosed all over again.
Indeed, I had always thought of myself as a long-term non-progressor because it seemed the virus lived inside of me but was doing little damage. Yet within a period of less than a year, I came perilously close to the point of no return. With the good fortune of having excellent insurance and living in a place with ample options for HIV care, I was able to start treatment…and it worked.
Within a few months, I was back to work again full-time and trying to figure out my life within these new parameters of now being not a little green monkey, but a long-term survivor.
Today, June 5th, is “HIV Long-Term Survivor Awareness Day.” Honestly, I did not even know that was a thing, but apparently it is. And, only now, 25 years in, am I embracing that the term applies to me. For some reason, I have a perception that because I enjoyed such good health those first decades that I don’t get to be among those who claim pride in still being alive. And yet I should.
My experience of living with HIV has, most certainly, been easier than most. I was healthy for a very long time and treatment works for me. But more pertinent is the fact that as a white blue-eyed blonde heterosexual woman living in the USA with access to health insurance; I am privileged and on many more levels than just as a woman with HIV. I have an amazing support system around me and know I’ll be okay if I need them to step up and care for me. I sincerely hope that day will never come, but I sleep better knowing I have options.
So I don’t have AIDS – I never did and never will. But I do have HIV and barring an eventual cure, that will never change. And for these 25 years I have also lived with the stigma and shame that surrounds this epidemic. Again, I’ve lived these things in the mildest of forms, but they are there. But against the odds, I am alive and thriving.
As I sit here writing this, part of me wants to hit delete and get on with my life, enjoying my good fortune of surviving for so long with this deadly virus. It would be so much easier to stop speaking out and just try to live a quiet “normal” life. And maybe I should, but I can’t. The day I stop speaking up is the day I fail my community.
Very few people living with HIV or AIDS are as fortunate as I have been. HIV-positive LGBTI deal with the double stigma – still – of having HIV and homophobia and/or transphobia. In the USA, women and men of color, but particularly women of color, are increasingly the face of HIV. They endure the double burden of having HIV and being brown in racist America.
HIV-positive individuals in countries with less vibrant infrastructures struggle to get and keep access to treatment. And, for the record, people in the USA also struggle to get and keep access to treatment. People living with HIV in unstable places – whether as a result of conflict, corruption or natural disaster – endure all of these challenges and more. The world is an unbalanced and unjust place. And I recognize how very privileged I am.
On this HIV Long-Term Survivor Awareness Day I feel blessed to be here and eternally grateful to all of the remarkable activists – HIV-positive or not – who came before me, stood beside me, and have come after to continue the fight to make the world a better place for everyone living with this virus and those impacted by our realities.
There is so much work still to be done. We need to be creative and continue finding new ways to tackle the epidemic but we cannot give up. We cannot become complacent. The world cannot pretend “HIV has been solved.” Government and the United Nations cannot draw down programs and pretend we can check that off our list. If we do not continue our efforts, more and more people will become newly infected with HIV. People will continue dying from AIDS if treatment is not accessible to all, particularly in war-torn and fragile countries. Those lives will be blood on our hands.
You are not alone. I am not alone. We must keep fighting. I could not have survived these 25 years without the work of others and none of us will survive the next 25 without the continued work to keep the world fit to inhabit. #Resist