By Toraje Heyward
How I contracted HIV is none of your damn business. I’m going to tell you what happened, but not because I owe you an explanation. Here goes.
My friend with benefits at the time casually suggested that he should get tested because he knew that he “messed around with several different people.” As he made this suggestion, it forced me to think on the last time that I was tested for HIV, which was a shaky “a year and some months ago.” The fact that I could not pinpoint the exact date of my last negative test result really bothered me, and the butterflies in my stomach began to swirl around like a storm. If thunder strikes, I thought, the lightning should be obvious to see. After all, I knew that with this particular partner, we always used a condom, and I couldn’t recall a “slip-up” of raw sex with any other partner within the last year. My body count — the number of partners a person has had sex with — was “average” in my opinion, based on a review of my peers’ social media posts that included both personal anecdotes and barebacking escapades with people they had met online.
The friend with benefits, however, unintentionally saved my life.
“Your diagnosis is HIV positive” were the only words that resonated within me — everything else was a blur. I felt overwhelming relief and pain — I knew that something did not feel right with my body, but apprehension about knowing my health status with certainty manifested into feelings of silent despair. I had to be honest with myself. I knew that I was not proactively visiting health care providers to receive routine check-ups or following up with comprehensive services. I did not prioritize HIV and sexually transmitted infections testing every three months, because as long as I used a condom most of the time, I felt content. Even though I did not engage in any other behaviors like injecting drugs, there were some symptoms that I tried to overlook but could no longer.
My first defining moment was when I visited a female barber in Hampton, Georgia. While she was shaving the hair under my neck, she touched a swollen lymph node on my chin, and then my Adam’s apple. And then she felt it again. It was extremely tender to the touch. I felt and saw her facial expression change, as if she knew something that I didn’t.
“You need to go get that checked” were the words that followed as she continued to cut my hair. I thought back to when I was hospitalized for proctitis, and the excruciating pain that felt like a thousand knives stabbing me in the stomach from every direction. Could the swollen lymph nodes have been related somehow? Some weeks after, I noticed that I also had swollen lymph nodes under my armpits, but that was dismissed as an adverse reaction to chemicals in the deodorant that I was using. These all were thoughts that raced through my head – I wanted to replay the situation in which the scenario could have resulted in a negative status instead.
The next day, I accepted my fate and my status. I took a photo of my results and threw the testing kit in the trash. At that moment, I chose life over death.
So when I tell you how I contracted HIV is none of your damn business, I don’t come from a place of arrogance or conceit. The disclosure of one’s health status is a privilege for some, and depending on what state you live in, can be a legal matter that brings jail time if someone says you didn’t disclose. Even if there are no official laws criminalizing HIV non-disclosure, people still face stigma and discrimination that can make it nearly impossible to talk about. Instead of focusing on the policing of marginalized bodies and values, efforts should be directed toward education, increasing access to health care for vulnerable communities and eliminating problematic beliefs and stereotypes surrounding the HIV virus itself as well as the people living with it.
You shouldn’t feel compelled to ask someone living with HIV how they contracted the virus. If you are unaware of the various routes of transmission, a simple Google search can provide you with answers. If I have no intentions of being in a relationship with you, or if I do not have any inclinations to have sex with you, then why should my health status be any of your business? Would you ever ask a cancer survivor, “Did you get cancer from smoking too many cigarettes?”
From my experience, many people honestly feel that HIV is something that only promiscuous people receive as a punishment for their actions. Many people feel that if they live a “righteous” lifestyle they will be excused from becoming a host to the virus. Many people feel as long as they’re not one of those people – gay, transgender, promiscuous, etc. – they will be safe. You see, HIV does not define my dignity or character. HIV does not distinguish my humanity, nor can it verify the expression of my gender or sexuality. HIV is a virus that invades my immune cells in order to survive. But with the help of HIV treatment, I know that I can be a winner every day. I owe it to my loved ones who are counting on me to thrive. I owe it to you, as you continue to live your story. You have a right to comprehensive care and education, but you are not entitled to the same access to my personal health.
If you are HIV-positive, strive to find comprehensive care that suits your needs and identity, which includes antiretroviral therapy and mental health and any other related services needed to suppress your viral load and increase immune system health. Advocate for those who don’t have the same health care access, regardless of your status.
If you are HIV negative, discuss options and talk to your health care provider about pre-exposure prophylaxis, a daily pill taken to prevent and control the spread of HIV.
If you are reading this and are still unaware of your HIV status, go get tested now.
Whatever you do after reading this, don’t ask the next person you meet who is living with HIV to tell you how they contracted it.
Toraje Howard is a contributing writer for TheBody and a member of Engaging Communities Around HIV Organizing, a leadership development program established by the sexual health advocacy organization Advocates for Youth. This column is a project of TheBody, Plus, Positively Aware, POZ and Q Syndicate, the LGBT wire service. Visit their websites — thebody.com, hivplusmag.com, positivelyaware.com and poz.com – for the latest updates on HIV/AIDS.