Patrick Lee Shares His Story: “I Didn’t Tell Anyone, and I Just Waited to Die”

December 1st marks World AIDS Day, and we want to raise awareness of the HIV epidemic. We want to share stories from people working in the HIV sector and professionals who work to ensure that their workplaces are inclusive of people with HIV.

This is a story by Patrick Lee.

I often joke with close friends and family that I have been HIV + all of my adult life. 2023 will mark 37 years of having this tagalong virus. I was sixteen years old when I contracted HIV. This was the early years of the epidemic that, based on what people were saying about it, meant that it wasn’t supposed to happen to me. I was a good kid who experimented with sex (heterosexual sex) in the summer of 1986. I contracted a sexually transmitted infection that was treatable, but it was accompanied by one that wasn’t. This was a year before we got our first antiretroviral and at a time when gay, white men were believed to be the primary target. We have learned a lot in the years since.

As one can imagine, I was terrified to the point of paralysis. I did nothing. I didn’t seek care, I didn’t tell anyone, and I just waited to die. It wasn’t until 1995, after months of my mother being sick with an unexplained illness and finally a diagnosis of AIDS, that I began to pay attention to myself because I had to pay attention to her. She nursed for greater than 30 years and acquired HIV through occupational exposure and never got tested because, again, HIV was a gay, white male disease. However, she accepted her diagnosis and began to live her life truly. She became an inspiration for me to do the same.

Unfortunately, HIV wasn’t done with our family. In 1997, my older brother was diagnosed. It wasn’t because he didn’t know the risks; it was because he felt guilty about his younger brother and mother living with something he felt was unfair to them, given he was the “wild one”. The beliefs and misconceptions we had about HIV led all of us in one family to become infected. Yet, we still never talked about it. I learned then that HIV wasn’t the only killer out there; silence was far more dangerous.

I committed to being a part of the awareness needed to end this epidemic. I channelled my mother’s courage, my brother’s theatrics and my own shame and pain to become an advocate. I learned as much as I could about HIV, and I shared that knowledge with as many as I could. I remember in 2005 when I interviewed with Gilead, I was asked, “where do you see yourself in five years?” My response was rapid and very honest. I answered that while I can’t predict the future, I do know that I will be fighting to raise awareness about HIV and helping to improve the lives of those living with it and affected by it. I have lived true to that statement and will continue to do so until there is a cure.