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HIV Does Define Me: There, I’ve Said It.

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When you're born positive, you can't help but at the very least be partially defined by HIV. As I approach my 39th birthday and being an advocate, educator, and working in the field in various capacities for 20+ years I'm more aware of it now than ever before. Part of me wants to take a break from the work so not all facets of life are impacted by HIV, but they probably will be regardless. Thank you for writing something so relatable. Be well.

September 25, 2019 Chicago


Well said an HIV/AIDS activist who somehow managed to survive with AIDS in the late 80s and 90s, I must agree that it definitely changes you. I live each day as a gift & try to help others do the same. One can't deny the stigma of HIV is real & forced on us by the rest of the gay community. Long-term survivors are shunned & ignored by the next generation because we remind them of their own mortality. Ageism is a HUGE issue with gay people, because they're controlled by vanity.

February 20, 2019 Honolulu, Hawaii

Bob Leahy

“ The good thing is, I've never met more dedicated and loving people, than among HIV advocates.” Mark you are so right. It’s been one of the joys of living with HIV.

December 23, 2018 Ontario, Canada

Mark Janes

Well-written. It's tough to strike a balance between HIV being the one thing that defines you, and denying its existence, especially if you remember how it was in the 1980s and 1990s- first watching lovers and good friends die horrible deaths or just vanish, then being diagnosed with it (in my case, in 1995) and knowing what awaited. To people like us, AIDS cannot help but at least partially define us. The good thing is, I've never met more dedicated and loving people, than among HIV advocates.

December 18, 2018 Guerneville, CA


The realization of my mortality has changed my life. HIV was the start of that realization. From April 1990 till today I have fought to maintain my dignity and independence from the ravages of HIV. I have lost friends, family and lovers to HIV. In my own way I have become an expert in HIV when it comes to nutrition, the importance of adherence, and healthy living. I am still not willing to let go of life, HIV just happens to be the nemesis in my life I live with and understand well.

October 17, 2018 CNY


I don't know. A good portion of these comments are quite sad. Why would you choose to be defined by HIV? Does living with migraines define you. Does cancer define you? Does having DDD's or a 15 inch c**k define you? You can choose to be defined by something or it can just be something that happens to be a part of your Universe. Taking a pill for HIV doesn't have to be anymore of a reminder that you have HIV than taking vitamins for strong bones that reminds you how human, or fragile you are.

September 23, 2018 NY


Refreshingly honest. HIV gave me a fight for my life and I became a disability pensioner for 15 years. Yet people would seriously say to me HIV should not define me. They push their denial on me in the same breath as saying how HIV changed their lives but not their slogan. Listen to people's stories and it seems there is scarcely a person living with HIV who hasn't been affected by it. The stigma insists on denial. I am not limited by HIV, I live with it - I have returned to work.

September 18, 2018 Victoria


How could HIV not define me? So many decisions are made around the issue of health care, such as where to work, where to live, whether to keep working. Dating? It's always an issue. I miss my friends who are gone and it's difficult to make new friends as I get older. I envy people who are fortunate enough to say, "I've been friends with so-and-so for 30 years," which is something I cannot say and be honest about it because of the epidemic. A positive attitude only goes so far.

September 11, 2018 Detroit


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