The Human Costs of HIV Stigma, And What You Can Do to Change the Story

Stigma is a three-dollar word that affects millions of Americans in different ways. Defining stigma as simply "a mark of shame or discredit" doesn't sound very impactful, and yet communities around the globe are paralyzed by it every day. I know this firsthand because I am HIV-positive. I have personally experienced the ignorance and discrimination faced by those of us who live with HIV. As you'll read below, it nearly took my life and silenced me for twenty years, but that changes today as I join the HIV Anti-Stigma T-shirt Campaign.

HIV/AIDS stigma is rampant in American society. It started in the 1980s when the disease was termed GRID (Gay Related Immune Deficiency); President Reagan refused to even say the word AIDS for four years and the epidemic decimated entire communities in this country all the while. There is not one person living with HIV that I know of who has not suffered at some point due to stigma. In my case, due to my chosen profession, stigma kept me silent for almost 20 years -- until now.

We cannot end the AIDS epidemic without fighting the stigma, silence and fear associated with it. The information about how to guard against HIV is out there, but people aren't educated, or don't think that they are at risk. People aren't getting tested (or even treated if they test positive) because they are afraid of the consequences of their loved ones finding out they are HIV-positive. Ignorance begets ignorance, and the silence of those of us who know better hinders the cause: we need to speak up.

I was well aware of the existence of HIV/AIDS when I was in college, and even asked my boyfriend if he had been tested. He mistakenly thought that because he had had a surgery, they had tested him, or maybe he was just afraid of getting that test and facing the stigma and hardship that come along with being labeled HIV-positive. Looking back, I was not educated enough about HIV, who can get it and how it's spread, and took no further action. I was a straight, white girl from middle America. When I started to have symptoms, no one thought of HIV. And when my boyfriend was dying in the hospital, riddled with the classic symptoms of AIDS, it took them two weeks just to come to the conclusion that they should test him.

James and I lived in separate states, so I flew back when he was diagnosed; I was diagnosed shortly after. Instead of offering me comfort, his doctor gave me my test results and offered me a hysterectomy. I flew back when he developed dementia, flew back as his health steadily declined, and flew back for his funeral. I told a few people of my diagnosis, but for the most part I kept all of my close friends in the dark about what I was going through. I didn't talk to anyone about the funeral of the man I had planned to marry. I didn't talk about watching him slip away, or the deadly illness that I now found myself living with. It was a heavy load for a kid in her early 20s, but it was mine to bear.

After a while I was able to find an interesting balance. I talked about HIV, I programmed around HIV, educated the people around me about HIV, but never said that I had been infected.

Then, a few years ago, the stigma surrounding an HIV diagnosis got the better of me. I had been self-employed my whole adult life, partially so that I would never have to divulge my HIV status to an employer while applying for insurance. Finally, in 2002, I got sick of the 12-hour days of hard labor and took a job with another horse trainer. In order to hide my HIV status from my colleagues, I went deeper into the closet and fell out of care. I took my meds as prescribed, but, unbeknownst to me, began to have a weakening immune system. Still, I did not see my doctor for nine months to find out that I had become resistant to those medications. I got sick -- really sick -- hiding my status out of fear, and it wasn't worth it.

In the ensuing three and a half years, I was hospitalized five times at two weeks apiece as a consequence of hiding my status. I had toxoplasmosis, seizures, a rare form of kidney disease called Posterior Reversible Encephalopathy Syndrome, which causes a brain lesion and put me on life support for a couple of days. I broke my leg, had a brain bleed that no one could figure out, I went blind, and eventually was encouraged to sign a 'Do Not Resuscitate Order,' at the age of 36. I was in home care, complete with IV poles and bi-weekly nurse visits. In short, no one expected me to survive.

It was a cathartic moment, and is probably responsible for this editorial and perhaps many other articles to come. But at the time, all of my energy went towards surviving and beating the odds, which is exactly what I did.

I came out of that time knowing that I had to take a different path. I am no longer willing to live with people becoming infected with HIV who might have learned from my story. Do I still grapple with stigma? Yes, I'm only in the beginning of this journey of self-disclosure, but I will continue in order to fight stigma. Am I afraid? Absolutely! I do not have much faith in our country's education level around HIV, and I deal with the repercussions of people's ignorance on a daily basis, but I'm looking forward to changing that. Without people like me coming out, stigma will continue. Perhaps a few people will change their minds or become more educated because of me, and that is reason enough to do what I'm doing. When I was little, my dream was to change the world. Perhaps this is my chance to do that, one person at a time.

One way that I'm fighting stigma is through the Illinois Alliance for Sound AIDS Policy's (IL ASAP). IL ASAP is a group of 16 dedicated AIDS advocates from across Illinois that I'm lucky to be a part of, and we've got our target aimed at stigma. This week, IL ASAP is launching its year-long Anti-Stigma T-shirt Campaign, and I want to join the effort! By purchasing our 'HIV Positive' t-shirt, wearing it out in the community and joining the Facebook campaign page to share your experiences, photos and videos with other campaign participants, you can start to fight stigma, and all proceeds from the campaign will go to further the work of IL ASAP -- it's a win-win.

So, are you ready to speak up?