Skip to main content

How I almost succumbed to AIDS: STIGMA and HIV Criminalization Laws

My Story


The following text is from a story I shared during community development events to cultivate a donorship for the nonprofit organization where I once worked. I hope that by reading this deeply personal account, you will empathize the unique situation in which those living with HIV find themselves; especially, considering the power of fear and stigma, shame, and self-denial to steal the hearts and minds of all of us when we first learn of an HIV diagnosis. 

In imagining the emotionality and contextuality of my story, brainstorm ways to show your support as an ally of stigma-reduction and HIV decriminalization; and then write a letter from your own perspective to legislators before this Monday's (2/1/20) Virginia Senate hearing. If you are reading this past the time to advocate for Senate Bill 1138, then consider ways in which you have (re)produced HIV-related stigma in the world and how you might unlearn those ideas and ideals as a function of your solidarity with those living with HIV as well as the experts working to the end the epidemic. 

Here is my "Life Legacy Story" from 2018, written for oral recitation: 

Life Legacy Story 

I tested positive for HIV in 2011. After having a physical to join the army, I received a letter in the mail that said I had a serious medical condition that appeared in my blood and I needed to contact the examiners immediately. My heart sank. I knew exactly what it was, but I threw the letter away immediately and pretended it didn’t exist. How can this happen to me?

I had just come out to my friends and family that I was gay, and now I felt I was back in the closet. I was scared.

HIV conjures up an image in people's minds. It scares them. They shame you for you it, it’s not easy to accept. There are still the remnants of deeply homophobic attitudes in this country, along with the stigma of HIV being the greatest barrier to opening up about my status to anyone. They’re not the prevailing voices any more, but it’s hard to drown them out completely. 

Over the next couple of months nothing happened, that I noticed. But then I started losing weight. One day I got out of the shower and didn’t recognize myself. I had lost so much weight. My lymph nodes were swollen all over my body, and I was so weak.

My doctor told me if I had waited any longer to come see him, I would have been in serious trouble. My viral load, of the number of copies of the HIV virus in my body,  had reached dangerous levels, extremely dangerous levels. I was 22 years old and on the brink of not only being HIV + but becoming AIDS defiant. 

I began receiving medical care and slowly regained my health but I still had not come out about my status to anyone. I walked around carrying the weight of this truth for months. I didn’t take my medicine like I was supposed to, I wasn’t taking care of my body like I should. I wasn’t taking care of the situation, I was ignoring it, because it was the best way I could cope at the time. 

 When I moved to Norfolk, two years ago, It was only a few days after the pulse massacre. I felt alone and scared. I don’t know why, but I felt compelled to visit the LGBT Center. For the first time in my life, I felt like I found some place that I could truly be myself. The stigma, shame, and self-denial associated with my being positive, was no longer a factor.

It was liberating to be able to talk about my status and my health, without judgment. There are so many more interesting things about me than the presence of a virus in my body, but so many people focus on this one thing. It hurts. The staff at the center welcomed me with open arms, and reminded me that HIV doesn't define me, I define my HIV by how I chose to take care of my mind, body, and spirit. 

On this day I chose to live.  I accepted that this virus was going to be “life altering,” not “life limiting”. And I gained a sense of dignity that I had not felt in some time. I felt pride in who I am, I took control of my life. 

HIV criminalization laws are cast a far-reaching shadow of stigma, shame, and self-denial from which it is hard to escape. I was living in the shadows before, hiding so much of who I was. Hiding my sexuality, lead to living a life behind closed doors. Hiding my status, from myself and others, caused me to become ill. See, when you are empowered, when you are living your truth, be it your sexual orientation, health status, gender identity, class, race, or religion, you respect yourself. You love yourself, and you take care of yourself. 

I’m open about my situation now. At a hospital appointment recently, the doctor asked if I was “out” about the fact that I have HIV. And the first time, I could honestly say “yes, I’m out and proud.” 

I want to make a difference, and I like to think I do, work to help hundreds of young gay men my know that HIV is not a death sentence but an opportunity to become more self-reliant and strong, and to own the virus and not let the virus own you. 

[end]


Comments

Post a Comment

Popular posts from this blog

Community Practicum Project: Part 1-3

As a scholar with specific subject matter expertise in anthropology and public health, and as an individual living with HIV, a first generation college student, and queer man with history of substance abuse whose work and life are deeply intertwined, I have derived a lot of comfort and hope in bearing witness to the power of community coalitions while accompanying community leaders and advocates in mobilizing to take care of one another, to act, and to engage in necessary fights around issues that have long been in existence: universal and meaningful healthcare, abolition, housing rights, equal employment, gender equality, environmental justice, and rights of marginalized communities, displaced populations, migrants and immigrants. I have worked alongside community leaders, activists, and health and social providers in the field of HIV and disease prevention who have long refused to accept the status quo, and have instead, created their own forms of care or reimagined the existing sy...
1 comment
Read more

Let's Talk About "Butt Stuff"

On Identity and Rectal Screening in MSM  I mean if folx are asking about the ass and no one is willing to talk about it, then imagine the needs of those who do not talk about "butt stuff"...For example, those who engage is sexual practices like anal receptive sex but do not identify or do not disclosure their identity as gay, bi, or MSM. They are unlikely to talk about their asses in a clinical setting, and therefore unlikely to be offered prevention or treatment.  A recent STI treatment experience once again reinforced the need to call attention to the lack of discussion about "butt stuff" among men who have sex with men (MSM), notwithstanding their identities. There is little focus on the needs of sexual minorities and the health issues associated with particular practices and sexual identities are even less established among relevant stakeholders; and for me, as a Bottom, I am particular bothered by the lack of care I receive from medical professionals in a varie...
1 comment
Read more

The War on Sex: Some Notes

  The War on Sex Sex is an important site of social control, adjudication, and- ultimately -oppression. Many social movement organizations have focused on sexual health and do not generally frame their work in terms of social justice or civil rights. The failed attempts to decriminalize HIV in the Virginia legislature, both within and outside the General Assembly, are both troubling and deserving of critical examination, and yet they are just pieces of a much larger puzzle comprising legal, social, and economic systems that do not readily seem to fit together. Institutional ethnography: Interrelationships among the General Assembly, Virginia Department of Health, and community organizations working to repeal the laws criminalizing HIV in the Commonwealth are each a subject of analysis here… The Problems of Prospective: “Thinking Sex”                 From the beginning, this issue was not seen for ...
Post a Comment
Read more