June 3, 2011
We've come a long way living with this disease. This year marks 30 years since HIV/AIDs began its bold and rapid descent upon the human race.
Could we have ever imagined that this disease would change the course of human history the way that it has? Could we have imagined so many people would fall prey to it?
What started as the "gay cancer" or GRID (Gay-Related Immune Deficiency) soon spread.
All races across all socio-economic backgrounds were affected. Moms, dads, brothers, sisters, aunts, and uncles -- no one was safe.
In 1985, contracting HIV usually resulted in an AIDS diagnosis and, often, death. Fortunately for many, this is not the case anymore. The medications used to treat HIV have allowed people living with the disease to maintain their health and live relatively stable lives.
Living with HIV is certainly no walk in the park. Taking medication every day, doctor's visits every three months, and the fear that one day your health might fail are just some of the challenges people living with HIV/AIDS face.
Nine years ago I tested positive for HIV with a T-cell count of 123 and a diagnosis of AIDS. Since then I have run six marathons and completed three 200-mile Ride for AIDS Chicago cycling events. I am truly blessed that this is my life with AIDS.
From the day of my diagnosis I knew what HIV was and how I got it. I can't imagine what it must have been like in the beginning of the epidemic, to be dying of something and not know what it was that was killing you. Or even worse -- knowing what is was, but having a doctor tell you "sorry, there is nothing we can do."
When AZT first came onto the scene, it was a lifesaver and brought many back from the brink of death. As more medications were developed, we learned that by taking more than one kind of HIV medication the virus could be more effectively controlled. Highly active anti-retroviral therapy, or HAART, was born. A daily regimen could include over 40 pills all requiring a specific schedule of when they needed to be taken and how (with or without food, at bedtime, etc.). Often crippling side effects like nausea, diarrhea, and lipodystrophy, among many others, made taking these medications a nightmare, but people were alive and they were grateful.
When I first started on HIV medications it was three pills once a day. Two of those combined into one, then eventually those two became the once-a-day regimen we know as Atripla.
I try to keep gratitude in my heart. Gratitude for the chances I have been given and for the people who have come before me. Honor for those who have succumbed to this wretched disease. For those infected in the early stages of the epidemic, who survived and continue on -- I tip my hat to them. They are truly heroes.
This article comes with the caveat that I write from the perspective of someone who lives in a developed nation with access to care. I am a minority, that is for sure. For much of the world, HIV/AIDS remains the same death sentence it was back in the 1980's. Where is the justice? The equality? These are bigger questions for another article.
I am very open about my status with those I meet. I have found that my openness about my status gives others the freedom to be the same way. I take great joy in that.
I have found that in living a life where I am open about my disease, I come across countless others living with HIV/AIDS who live with fear of rejection, self-loathing, and in self-imposed isolation. My call to action for all of my positive brothers and sisters is that you find the courage to free yourself from these chains. Find the courage to accept your disease -- warts and all.
Yes, it is true you may lose some people along the way. The fact is that people who don't accept your disease weren't really the right people for you anyway. Removing them from your life allows room for those who will accept you just the way you are.
Join me on the 30th birthday of our "fabulous disease" and shout from the rooftops, I am HIV-positive and I am proud.