Thoughts on World AIDS Day: Moving From Shame to Acceptance

So,  nearly 6 months since I posted anything on the original blog.

Having said that, I'll be try to be concise as I can while I write this post. To put it bluntly, I am living with HIV and have been for some time now. Part of the reason I chose to write this post is because of World AIDS Day and the fact that I'll be volunteering in some activity to help PLWHA - myself being one of them. I was diagnosed in 1998 and for the last 13 years or so, I had been very fortunate to not need medication as my body's immune system had done a pretty good job keeping the virus in check. That all changed this year though; after many doctor consultations and discussions with friends who are HIV specialists, I elected to start HAART. I chose Atripla, which is one of the medicines that combines three classes of Anti-HIV agents into one pill.

To state that this process of taking medications (which I will now have to do for the rest of my life) has been an adjustment period would be an understatement. It has required some lifestyle changes as well as some outlook changes. I am fortunate to have a pretty good working knowledge of pharmacology as well as close friends who are stellar physicians. As long as I continue to take care of myself and make my health a priority, there is no reason why I won't be able to live a productive life and accomplish all of the things I have purposed myself to do. This post is a bit cathartic in that it allows me to publicly declare my comfort with something that used to cause me much pain, angst and shame. It's almost as if it is a second coming out and one that allows me to be free from my own judgments about what I considered a shortcoming. It allows me to function in complete honesty and candor about myself. Such is the case with self-acceptance and for that I am completely grateful. For anyone who may be missive of the psychological toll HIV takes on a person who becomes infected, it's real and traumatic.

Another reason I chose to write this post and expose myself is related to the stigmatization that accompanies HIV disease. People still think of it as something that people get when they are behaving badly and to some extent, that's right. If I had never engaged in unprotected sex with a person who was HIV positive, I would have never become infected. I did though; and I am though. However, the same can be said of lung cancer patients who are chronic smokers or the morbidly obese who suffer from hypertension and diabetes and continue to over eat or eat poorly. Others see HIV as a disease that prompts an almost permanent relegation to victim status. I don't. They feel that HIV positive people shouldn't have to be held to the same standards as anyone else who lives with and trudges through adversity. Let me be clear though, I still believe in the need for programs that are dedicated to improving the lives of HIV positive people, particularly since discrimination against people living with HIV is still prevalent. I think that after 30 years of this epidemic though, that their  needs to be a push to focus on improving the lives of PLWHA through reinforcing the right to self determination instead of depriving them of it.

When I used to work in HOPWA housing too many people developed an over-inflated since of entitlement about many programs. Their idea was that the government owed them something as a result of becoming HIV Positive. At the beginning of the epidemic, when people were losing their jobs, homes, and social supports - all because of HIV infection (actual or perceived) it was absolutely necessary to create programs like those funded through the Ryan White Care Act.  As a result, those who truly needed the help had to be turned away because those who could lead more independent lives chose to do otherwise... and were convinced that they were consummate victims and that their HIV diagnosis precluded them from being contributing members of society. I resented them for it because I have lived with the same disease for over a decade. I managed to put myself through college, matriculated with a BS degree in Biology and a minor in Chemistry, worked full time, maintained my own apartment without assistance from any program and did so because I'd have felt guilty siphoning resources that were already scarce and need by someone else who desperately needed them. I have seen people lose housing vouchers for failing to pay their portion of HOPWA rent, abuse food stamps and food voucher programs, or lie about their income to qualify for resources that weren't eligible to receive in the first place. And whether you agree or not, these things reinforce HIV stigmatization more than any person's belief about the disease.

HIV can be a disabling condition, but it does not have to be. And my diagnosis as an HIV positive person does not abrogate me from my responsibility to society to do everything I was doing prior to getting infected - to be a contributing functioning member of my community. It also means that I take a special interest in trying to prevent the spread of a disease that has devastated the lives of  so many people. So while I commemorate World AIDS Day on Thursday, December 1, 2011, I do so hoping that HIV positive people take the lead in making changes to many of the programs that support HIV positive people by empowering them - not hobbling them by stigmatizing them as victims.

I had an interesting conversation with one of my professors about that changing landscape of HIV activism. She made an interesting argument about how the Breast Cancer movement was able to build itself out of removing shame and stigma associated with the disease, to one that empowers breast cancer survivors. How can we as HIV positive people do the same thing? How can we move forward? When can we celebrate AIDS in the same fashion we celebrate breast cancer?

I solicited a few thoughts from close friends of mine who are also HIV positive and the reponses were overwhelmingly positive, but still affected by stigma. I was going to publish them here, but will save them for another time because I want to tell their stories. For now, in celebration of World AIDS Day, go get tested. If you are positive, keep living life.

Things can only get better if you have an absurd determination to live.