Reflecting on my 40 years living with HIV

Jesse Milan dressed in a dark suit with blue tie stands on the white marble steps of the U.S. Supreme CortOn World AIDS Day, I’m usually asked to represent and focus on all the people in the past who have suffered and died from AIDS, on all in those past and the present who have been diagnosed with HIV, and on all who have labored and fought over the decades for the health and well-being of people living with and vulnerable to HIV.

I tend to try to represent them all — the gay men and lesbians, the transgender and cisgender, the Black and Brown and white, the Native and Asian populations, the youth and all of us aging with HIV, the men and the women, and the boys and girls. They are all my peeps, and I do my best to represent them.

But this year on World AIDS Day, I’ve been asked to represent only me.

That’s because this year is my 40th year living with HIV.

I probably won’t be in this role as CEO of AIDS United when I reach my 50th year living with HIV (though aging well with HIV is my personal goal). So, I’ve been urged to take this year to reflect on my 40 years as a person living with HIV — not from an organizational or even community perspective, but from my own life and experience.

I can say that for me, HIV has been mostly about love.

The love I shared with my late partner who died of AIDS 37 years ago, almost exactly to this very day. I felt his love radiate to me for taking care of him until he died.

It’s about the love I have with my husband with whom I’ve shared the last 34 years. We met doing HIV work together at the community level in Philadelphia. I love my husband, Bill.

It’s about the love I’ve had from my family — my parents and brother and sisters, my cousins, aunts, and uncles who never shirked when they learned I had HIV.

It about the love I’ve experienced in my faith community — people who never shunned or rejected or even distanced themselves from me because of my HIV.

It’s even about the love of my Republican next-door neighbors who have learned that a person with HIV is only that, a person first.

And of course, for me it’s about the outpouring of love I’ve known from the staff and professional colleagues I’ve worked over these 40 years. I’ve received love from people on boards and committees, in organizations, and in meetings and conferences and events across the years that are too numerous for me to remember or count.

But today I’m reminded of one. In one board meeting over 30 years ago, I came out as a person having HIV. When I said that, a dear friend and colleague and board member sitting right across from me started weeping. I will never forget when he said, “Oh no, not Jesse too.”

How many times has someone thought oh no, not him; oh no, not her too.

That’s because it was once an inevitable outcome that we would die of AIDS. But across the span of years of this epidemic we’ve had great biomedical progress that has taken that evitability of dying from AIDS away.

That inevitability is gone provided we have access to treatment and care. Provided we have insurance, be it public or private. Provided we have a health care provider who you can get to and who will work with you and care about you to help you reach and maintain an undetectable viral load so that you never develop or die from AIDS and never pass the virus on to someone else. U=U is a wonderful thing that I hoped for but never thought I’d live to see some 40 years ago.

But today, we still hear and feel the sounds of oh no not him; oh no, not her too. Today it is often based not so much about the fear of their death but the stigma that persists about HIV. It is stigma that prevents too many of us from knowing our status and getting into care. And that stigma is compounded by racism, sexism, homophobia and transphobia that stop too many of us from seeking and receiving the love that we most need to sustain us.

That friend and colleague who wept when and said, “Oh no, not Jesse too” never wavered in his love for me. He demonstrated what I hope on this world AIDS Day the world hears from me: It not only the bravery of people living with HIV that will help us end this epidemic and end the stigma and inequities of HIV, it’s the courage of people who do not have HIV that we need to demonstrate publicly and forcefully their love and support for us.

That open support must include not being afraid to say the term HIV, and not being afraid to say that you know about and care about someone with HIV. That open and fearless support after 40 years of this epidemic is needed in the voting both just as much as it needed in Congress. It is needed in the state house and in the White House just as much as is it is need in your own house. Because it is in our living and dining rooms, in conference rooms and board rooms, in breakrooms and workrooms, and in sanctuaries, synagogues and mosques — in any room or place where a person living with HIV might want to, or more likely, is afraid to share their status. That’s where we need you who do not have HIV.

My heart stopped when Henry said, “Oh no, not Jesse too.” I know his heart stopped when he heard me disclose that I had HIV. His heart and mine were connected in that moment, and they have remained connected across these many years.

My story of my 40 years of living with HIV is first and foremost about the connections of the heart. They are connections that I’ve been lucky and blessed to know. My hope is that all of us living with HIV will be so lucky and so blessed to find and know that love.

And on this World AIDS Day, that love might just start with you.

For resources this World AIDS Day, click here.