Living the Questions
There is an interesting paradox that comes with being diagnosed with HIV. When you're told that news, you can think of nothing worse. I remember passing out in my doctor's office on Manhattan's Upper East Side. But then, with a smile and encouraging gestures, the news is often followed by the details of managed care, the advancement of medicine, and the phrase “It's no longer a death sentence.” “You will live longer than anyone has before,” my doctor added.
Emotions get confused. You have just been diagnosed with an incurable disease that no doubt will have a huge impact on your personal relationships and physical health. But you feel like you should be happy because there are huge advancements that make it easier to live, and live longer. I actually remember crying and smiling at the time because I felt like the doctor would think I didn’t hear him. Either way, I was unhappy, and that would only get worse.
It started with sadness, shame, and no one to talk to. I then found myself disgusted by my own body, cringing at the site of my urine. Suddenly the sight of my own blood was jarring to me; I flinched when I realized I nicked my finger. Then I remember the first time I couldn’t get out of bed. I was by all accounts perfectly healthy, but I could not muster the energy. It was the first time I had to miss work. It was as if I had been paralyzed by the thoughts that would not stop, as I was constantly trying to makes sense of an issue it seemed the rest of the world had figured out. I watched HIV-positive friends date and have nothing but great outlooks on the world. I tried, but I only grew more sad.
These feelings would persist and manifest in different ways on different days. One moment I would be screaming at my mother on the phone. The next I would be crying alone in the shower. After I started medication to treat HIV, I would find its impact on my mind more jarring than I expected. I would wake up feeling drunk and nauseous. Though I always made it to work, I would be anxiety-ridden by 3 p.m. I couldn’t sit still at my desk and would instead pace around the agency. By the end of the day I was too tired to do anything else. I once had run seven miles a day; now I barely went to the gym. Even though I was tired, there were nights I couldn’t sleep. Sometimes I went weeks with only a few hours of sleep a night. My personality was gone. Once outgoing and assertive, I now was withdrawn and never happy.
Sadly, this answer is not always the one people discover. Suicide rates among gay men and those who are HIV-positive continue to be higher than in most demographics. Changing the conversation to create an environment that is more supportive, inclusive, and understanding of this disease, I have to believe, would help change lives. Encouraging people to seek support and reminding them they are not crazy but rather just human is critical not only for those facing this news but any life-changing event. There is a responsibility that communities have both to help with prevention and to help those living with HIV. I am not suggesting we can make people happy or that we have a responsibility to address everyone's sad day, but we can help those struggling to find the tools they need and create an environment to rediscover the happiness they once had.
I had once thought I would never tell anyone about my darkest day, but inspired by the final words in Michael J. Fox’s latest book, and finally in a place void of shame, ready for help, and slowly finding happiness, it was time.
“Remember, though you, alone, are responsible for you own happiness, its still okay to feel responsible for someone else’s.” — Michael J. Fox.
To those who felt responsible for mine, I am thankful.