The first day of spring is always the same. It’s something we don’t experience where I’m from. Here, when the cold finally subsides, it’s like a physical rebirth. It is that college-on-the-east-coast experience that my parents always wanted me to have. They were right; it is glorious. Students from every school at NYU can be found meandering through Washington Square Park, some huddled into groups on the grass, others sitting side by side near the fountain. College is the time of fleeting youth, of making mistakes and learning, of innocent (or not so innocent) romances that you will one day remember with a bittersweet pang in your chest. This year spring feels different. That spontaneous and carefree young adult that I was just a year ago is now a stranger to me. As I walk through the park, the thick orange sunlight gifts richness to everything I see. I am watching my peers from above, removed from my own skin, detached from the legs that now carry me across this leaf-covered path.
Upon finally returning to NYU this academic year after a year-long medical leave of absence, I found out that I was living with HIV. I had no symptoms, and I went for my routine STI check at the Student Health Center with the utmost confidence, as I have for years.
I could never have HIV. I will never have it.
It’s like seeing a devastating natural disaster on the news. You think, “God, that is horrible. But it wouldn’t happen to me.”
For the weeks that followed my diagnosis, I knew in my heart that my time on earth was coming to a close. I hated the fact that it had to be so soon, but I knew that there was nothing I could do. I was unable to comprehend how this could be the universe’s plan for my life. I had envisioned so much more. I cried as though I was mourning my own short life. I can barely think about the cold, fluorescent-lit medical office, the way I was surrounded by unknown faces and almost 3,000 miles away from my home. That day, October 3, summer stretched its long arms into the new season. I wore a tight crop top and little shorts to that appointment. Feeling the last bit of warmth on my exposed skin. I can still see the nurse’s eyes looking me up and down, how they read “slut” when I came in to get tested. How disgusting, trashy, and worthless I felt after being diagnosed with HIV, desperately trying to cover up my body in front of the medical staff and the men that passed me by on my way back home. Six months later, these are the memories that still make me cry.
With the incredible advancements that have taken place in HIV research and modern medicine, people with HIV now have the opportunity to live long and healthy lives. Gone are the days of taking two handfuls of pills; today I am blessed to only take one pill, once a day. While my immune system will always be somewhat compromised from the initial contraction of the virus, and small illnesses like a cold or sore throat have now become causes for alarm, my body will survive with the right care. I can regain my strength. Where HIV tends to be the most damaging is the mind. I attend therapy twice a week, frequently reach out to my personal support systems, and yet, nothing can quite sooth the pain, loneliness, and confusion that my diagnosis has left me feeling.
By the fountain in the park, the number of handsome faces and healthy bodies appears limitless. The human beauty before me almost matches that of the spring foliage. I see them there, the boys reading books by the edge of the water, how they flip their long hair and skate smoothly by, throwing nonchalant glances wherever they so choose. Imagine. My own imagination tempts me with images of making out under the fresh spring moon. I don’t stop myself. Recently these dreams are all that I have.
In real life, in this world of one-second attention spans and immediate gratification, the thought of getting to know someone long enough to disclose my status feels like climbing Mount Everest with no ropes. I am often nervous that disclosing my status will push my partner away, leaving me with misplaced notions of guilt and shame. I resent the fact that I must reveal something so personal to somebody that I am only just getting to know. I’m 21 years old and I feel as though young love is a luxury that I cannot afford. Though I wish I could, to have sex after months spent recovering from my diagnosis would feel like a terrible crime. Even if I use a condom, he could give me an STI, and if I get another sexually-transmitted infection, I would not want to live. I dream of soon being able to enjoy sex and love as a young adult, but I keep those thoughts far away, just in case they never come true. In this detachment comes isolation, a self-imposed quarantine.
After HIV, I cannot afford to be hurt again.
Perhaps, for those who don’t have it, one of the most detrimental and forgotten effects of living with HIV is the profound isolation that comes with it. I walk quickly through the park, wanting to be invisible and seen at the same time. Loneliness doesn’t mean not having friends, loved ones, and a support system. I am blessed with all of those things. But living with HIV has left me feeling alone even when I am surrounded by friends. The pressures of stigma carry heavy effects.
You ask yourself every night, why me? Does an HIV diagnosis mean that I must become a different person? You attempt to understand what this all means in your life. You wonder who else might be positive. All of a sudden, you belong to a new social grouping. A medical statistic. But most of all you are constantly afraid, even when you feel healthy. It’s hard to explain to others what it’s like to live with fear. Although my doctor reassures me of my overall great health, I sometimes find myself overcome with terror and dread at the thought that I may die soon. There may be nothing in particular that triggers these thoughts, nor any reality behind them. Yet my mind can sometimes convince me that I will be gone before my time. I have felt close to death decades before most of my friends. Fear also exists in my anxiety of losing friends from being too emotional, or sharing too much. Making new friends in college is hard when they ask you how you are, and you can’t even pretend to be good. How do I explain why I sometimes need to miss class in order to get my blood drawn or discuss tests results with a specialist? Or share how it feels to leave my HIV medication at home after spring break: a crushing, debilitating panic, a deep and relentless fear of death?
Since my diagnosis, “community” at NYU has remained an impenetrable avant-garde concept reserved for the lucky few. In my experience, NYU has proved itself to be one of countless top-rank universities in the United States that severely drops the ball when it comes to providing sufficient mental health resources for students living with HIV. While individual counseling exists on campus, I have yet to encounter any community-based support programs for positive students. People living with HIV face a much higher chance of developing mental illness, and are more likely to commit suicide than the general population. A study on the effects of HIV on mental health in France also concludes that HIV positive individuals who report feelings of social discrimination and isolation are much more likely to take their own lives.
Getting diagnosed with HIV during college, already one of the hardest periods in a young adult’s life, without being offered adequate support systems of professionals and peers within the school itself is, on the university’s part, irresponsible and even negligent. I am lucky enough to be able to receive treatment outside of NYU. I’m not sure where I would be, had I only been left with the resources available to positive students on campus. Devastating consequences appear when we expect a university student to simply deal with a new HIV diagnosis, most likely far away from home and family, compounded by the stress of homework, jobs, and social dynamics.
HIV is a social epidemic. It arises from human interaction and social factors, and it is soothed and cared for through these same things. The effects of loneliness and isolation are particularly dangerous for people living with HIV, since they have been proven to lead to other high-risk behaviors such as drug use. Drug overdoses take as many as 29% of HIV positive lives, while non-drug related suicides hover around 7%. These statistics are unacceptably high. We must take a social approach in order to effectively combat the often life-threatening challenges that can arise after a diagnosis. Community-oriented support is especially valuable at the university level, where students are living through the most vulnerable chapters of their lives. Only through healing our connections to others and to our own bodies can we finally stop blaming ourselves for contracting HIV, something that was never our fault to begin with. As students living with HIV, we must allow ourselves to feel worthy of the possibilities that life has to offer us, and to participate unapologetically in society. We do not move forward from HIV by crying alone in our rooms, or talking to an HIV-negative “HIV counselor” that we have never met before. We survive through community and connection. Every time somebody is diagnosed with HIV, there is a chance that we may lose them. If we don’t lose them to death, there is a much greater chance that we will lose them to life. Many individuals with HIV struggle to be present in their daily lives out of fear of confronting the overwhelming pain; they have convinced themselves, aided by social isolation, that their lives are not worth living.
Every single person who receives this life-altering diagnosis deserves the chance to experience post-traumatic growth, not just survival. We need to be there, as a school and as a community, to catch those of us who can no longer carry the weight of the world, to let other positive students know that there is a chance of happiness after HIV, a possibility of falling in love with yourself and with life again, even after convincing yourself that being alive is no longer an option.
Hayden Howard is a current junior at NYU Gallatin studying the social and historical factors that shape the development of queer and marginalized identities. On campus and in his personal life, he is dedicated to giving a voice to young adults living with HIV, particularly in the university setting. Contact [email protected] to find out more about his current community-based support project for students living with HIV and their allies.
Email Hayden at [email protected]