When I was diagnosed with HIV my very first thoughts were, “What am I going to do about health insurance?” and “Ugggh this is annoying!” when thinking of the long lines and wait times ahead of me. Years later I realized this reaction and these thoughts were not the norm for people newly diagnosed with HIV. If there is something I have learned about the fight for equality, it’s that every voice counts, even those that diverge from the common experience.

When I attend conferences and share spaces with my HIV community, I often feel out of place. I’m exposed constantly to very sad and traumatic stories of survival, disclosure, discrimination, rejection, and shame. These stories are a major part of the HIV experience and may offer comfort to the many, but they don’t have that effect on me. Although I empathize and understand the massive importance and value these stories have, my experience was very different. In my world, HIV has always been about health, science, facts, and the fight for equality. This in and of itself, while admittedly the exception, should be as valuable and as accepted as those with the more traumatic HIV journeys and experiences.

Many times, I felt guilty for not having shared similar devastation. Although I grew up in the 1980s during the height of the epidemic and saw its coverage in the news, I did not have friends dying every week from complications related to HIV, I did not see people wither away covered in Kaposi's Sarcoma, and I certainly did not experience the backlash the gay community faced when HIV was linked almost entirely to gay men. All this happened while I was living in Puerto Rico. I was not diagnosed during this period of uncertainty regarding HIV treatment and life expectancy. Often, I find myself lost around my peers and feel like my experience is not welcome. People who have been working in this field since the beginning often verbalize how the “new generation doesn’t understand all the hardships we really went through.” I have even felt guilty for only having a one-pill a day regimen since the beginning of my treatment.

Disclosure was always the most emotionally charged of all my experiences. I must recognize how lucky I have been with my family and friends’ support, but even with this, disclosing can be quite challenging. My ability to do this depends on time and place, and it is determined by my perception of that person’s ability to understand. In my sexual life I’m very open about my status, and I wouldn’t have it any other way. I find that ultimately people’s responses are more determined by how I frame the information. I have the opportunity to create my narrative and, in that way, educate the people that listen to my message.

How did HIV change my life, you might ask? Well, it made me a more voracious reader of medical research. It made me want to learn more about human behavior and sexuality. HIV made me more aware of my health and that of others. When you’re confronted with mortality and human fragility, you change, no matter what age. I recognize my privilege because I had access to health insurance through my profession, adequate education, and a good support system of friends and family. If more people had the access to these very basic things maybe the overall response to HIV would be less traumatic.

In my case, I’ve become a fighter for acceptance and equality regardless of HIV status. As a life-long educator, it made me want to educate others about the virus, the laws that criminalize it, and the continuous fight against stigma. I am still scared about the lack of HIV education overall. During my years as a teacher and later as sexual health trainer, I witnessed first-hand the desperate need for a more modern approach to HIV. One thing I never understood is how quickly HIV disappeared from public discourse and public education. This is what motivated me to change careers and join the global HIV advocacy movement.

Am I the odd man out? Of course not. I am confident there are many people who share my experience. For readers who feel similarly, know that your story and the way you feel or don’t feel about living with HIV is valid. Ultimately, having stories like mine, which lack any major traumas or scars associated with my diagnosis, is in fact a sign of progress. One that will hopefully help us reach the day where there are no more diagnoses at all. To have someone with my experience out there might be a sign of slow but steady change towards acceptance and the end of HIV stigma.

Comments (0)

Comment is Required!

Rating: 1 2 3 4 5

Type the code below into the textbox. The code you entered is incorrect. Please try again.

No comments added!