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On Not Letting HIV Rule Your World— It’s Time To Speak Your Truth On Your Terms

Scared, ashamed, lost, alone, worried, anxious.

These are just some of the ways I felt when I learned I was HIV positive on that spring day of 2011. Coping with this news was something that became a daily struggle. They say that life is about choices, and in an instant, I felt suffocated by the number of decisions that were forthcoming in the days ahead.

Who should I or could I talk to about this? How would I get treatment? Should I start treatment right away or wait? How would the rest of my life be impacted by my diagnosis?

In the Black community, we do a good job of dealing with things on our own and not asking for help. I later learned that this isn’t always the healthiest approach to life matters. I would ultimately succumb to that pressure, even without anyone directly telling me I had to figure this out by myself. Spending my time worrying about the outcome of what would happen if I shared this personal information caused me to bury it deeply. I did however make a decision that I would not let HIV define me or what was possible for my life.

“I did however make a decision that I would not let HIV define me or what was possible for my life.”

                                                        — Tony Jermin

Slowly, I put one foot in front of the other and did the work of finding a doctor for help who walked me through the appropriate steps towards getting my medical expenses covered through programs available to the community, because what they don’t tell you is how expensive HIV treatment is. Thank God for each glimmer of hope along the way, because it was a long agonizing road to securing treatment for myself, especially since it wasn’t covered by my insurance at the time. To this day, I still don’t know what gave me the strength to push through. Reflecting back, I think my will to live and not only live but thrive, had something to do with it. I had hopes, dreams, and aspirations for myself and HIV wasn’t going to stop me from achieving those things at any cost. I encourage folx to figure out their why. What is your reason to live? Hold on to that and let it be your guiding light, because I’ve learned that what you desire in life, you deserve.

“What is your reason to live? Hold on to that and let it be your guiding light, because I’ve learned that what you desire in life, you deserve.”

                                                        — Tony Jermin

If there is one thing I would go back in time and tell myself, it would be that you are not alone and it’s going to be okay. As the days, weeks, months, and years passed by, the more confident I became in my status. I had become undetectable and less bothered with knowing my own truth. This doesn’t mean that it wasn’t constantly in the back of my mind. It absolutely affected my approach to relationships and sex.

I went through phases of not caring that I wasn’t vocal about my status, to caring so much that it strongly impacted my mental health and how I navigated those relationships. It wasn’t until 10 years after my diagnosis that I would feel completely free. This happened because I created a platform called Surface Level Podcast with two of my best friends, where we have curious conversations about the Black, Queer experience.

It was through this vehicle that I would gain the courage to speak my truth on my terms. In an episode entitled, UndetectableI shared my HIV story.It gave me the opportunity to put my own narrative out into the world in a way that allowed me to release myself of the stigma and get on the other side of fear, to freedom. The journey looks different for everyone, and I encourage anyone reading this who might be going through challenging times to keep fighting for yourself.

I didn’t know I could feel this level of freedom and it is now part of my life’s work to help set others free or to at least help others feel seen and less alone in the world.

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