What Happens When You Stop Fearing AIDS and Learn to Live with HIV

Originally published on intomore.com

I first learned I was HIV positive in March of 2005. I was 30 years old, and the news gutted me.

I can still remember the guy who delivered my diagnosis. His name escapes me, but I can still see him if I close my eyes: thirty-ish, scruffy, Mid-Westerner, wearing a rumpled plaid button-down and loose-fitting chinos. I remember his very first words to me when he came back into the room carrying my test results. He said, “I’m so sorry, I have bad news….” I remember the earnestness in his voice and the pity in his eyes.

Over the years, I’ve thought back to that moment and wondered if there wasn’t a way he could have delivered the same news while focusing less on the shock of the diagnosis and instead taken more time to try and explain to me how my life would, and wouldn’t change, as a result of my diagnosis.

It may not surprise you to learn that what I remember most clearly in the days and months following my diagnosis was the fear. It was nebulous, pervasive, and debilitating. But what may surprise you is that I never really feared dying from AIDS. No, my fears came from the knowledge that I was going to have to spend the rest of my life living with HIV.

Even in 2005, I knew that medical treatments had advanced to the point that people newly diagnosed with HIV had a better-than-good chance of living long lives (that is, as long as they had health insurance and access to care – but that’s a different article). I quickly learned that there were a number of drugs that could be prescribed to protect an immune system from the virus and lower the amount of HIV someone carried around. There was even a pill you could take once a day that did both.

Because of this reality, I never really feared that I would die of an AIDS-related disease. Which left me fearing the answers to a strange series of questions: what would it be like to live the rest of my life with HIV? Would I ever meet someone and fall in love? What would happen to my body after decades on meds? Would I ever father a child? Would I ever have sex again?

When compared to the fear of death so many HIV positive people experienced even just a decade ago, these may seem like small worries…but for me they were real. I remember literally shaking at the thought that I would have to spend the rest of my life apologizing for my great mistake. I cried for months worried that I would become so desperate for someone to overlook my diagnosis that I would compromise myself and end up in a bad relationship rather than be alone. I feared the long-term effects, both cosmetic and clinical, that the powerful drugs that would keep me alive could have on my body. I feared not being able to afford my life-saving drugs. I feared passing along the disease to someone else, someone I loved. There was so much fear — but that was almost 13 years ago.

Today, I look back on my younger self and I want to reach across time and give him a big hug because most, if not all, of those fears never materialized. I spent literally years of my life worried about everything related to living my life with HIV, and I really didn’t have to.

So, to the person who is just finding out that they are HIV positive, or to the person who knows someone who is going through this, I have some advice for you: take a deep breath. If you are like me, the news is coming as a shock. Even if you knew that you were not being 100% safe all the time – it is still a shock. Be gentle with yourself. Don’t let anyone else rush you through your process. It’s a lot to take in.

Once the shock has begun to wear off, I want to you to know, that in my experience, there really isn’t that much to fear about living life with HIV. It’s a lot like living life without HIV, except that I take a pill once a day before I go to bed. As long as I take it as prescribed, not only am I healthy but the chances of me passing HIV along to someone else shrink to almost zero.

This last part is good news because I want to tell you that, if you are like me, you won’t have many troubles finding people to date (well, at least your chances of getting laid won’t be any worse than they were before). You can still be as active as you want. And because you take your little pill every day, you can feel good that you are doing everything in your power to make sure you do not pass it along to anyone else. Hell, you can even have your own biological children if that’s your thing (although, I have to warn you, it IS expensive).

I spent years of my life lost in worry and suffering because of my fears about what living with HIV would be like. So, this World AIDS Day I want to tell you that living with HIV is a lot like, well, living.