Aging with HIV
Important Interview
“Aging with HIV” is one of series of interviews by Bursting Through Founder Steve Petersen exploring topics important to Allies and the Queer community. This interview was conducted with HIV Advocate Charles Sanchez exclusively for Bursting Through.
Q1. You are an advocate for those living with HIV and a person living with HIV, can you tell us a bit about your journey?
My HIV journey started about 21 years ago if I don’t count all the years hearing about AIDS and living through the AIDS crisis. I don’t know how I managed to get through the AIDS crisis living in NYC having no friends who were sick or who died from AIDS.
I didn’t even have any friends involved as activists with ACT UP or any AIDS organization. I did a couple of AIDS education shows for kids in my 20’s but that was the extent of my contribution then.
21 years ago, on November 4, 2003, I lived in Little Rock, Arkansas. I recently had broken up with my boyfriend and was living with my friend Cassie. I was sick with what I thought was a severe case of bronchitis.
One day, Cassie came home from work at lunch to check on me. She found me on the floor, blue from lack of oxygen. She carried me to her car and drove to the emergency room. I have no memory of that day.
The next thing I remember is waking up surrounded by my family from Arizona. I thought ‘What the hell are they doing here.’ Turns out, I had been in a drug-induced coma for three weeks and had almost died.
That is when I was told I had AIDS. That was my diagnosis. My viral load was through the roof and my T-cell count was 4. I had to go from someone who was working three jobs to someone on disability.
I had to restart how to live my life as someone living with HIV. I had to get over the shame and the stigma of it as well as the physical battles. The stigma is a continual battle.
Now I am someone aging with HIV. I am part of the first generation doing that; the first generation of people living with HIV and dying of natural causes. That is a miraculous thing that couldn’t have been imagined 30 years ago.
Q2. You mentioned getting over shame and living with the stigma. Can you talk a little bit more about the emotional impact of accepting living with HIV?
I think I still had leftover shame from just being gay and growing up catholic in a Mexican family. It’s all mixed in with my HIV. Not only was I just the ‘sinner going to hell’, but now I was also ‘DIRTY.’
It became I should have known better as someone who grew up through the AIDS crisis. How was it that I was so irresponsible?
The label of irresponsible is something newly diagnosed people live with today and is HORRIBLE. It’s a virus. Anyone can get a virus. It doesn’t discriminate. There are ways to protect yourself from it but I got HIV from being a human being.
My first memory when you mentioned getting over the shame is when I was newly out of the hospital. I was now unemployed, living on disability, and spending most of my time in my apartment.
I was lying on my couch with my cat on my chest and she started hitting me in the face. I think she had gotten tired of me being home (in her house).
It’s like she was saying ‘Get up’. That’s when I felt the universe telling me this was not the end of the world, that I wasn’t going to die. I got up. It was the first time since my diagnosis I felt like I had made a choice.
Q3. What surprised you most about your journey and how did that surprise present itself?
I don’t know that I have had a big surprise but there have been a lot of little surprises. The first thing that came to mind was the musical comedy web series Merce, which I created and starred in.
Merce is about a guy living with HIV who wasn’t sad, sick, or dying. It was very controversial. When the first season came out and articles were being written about it in HIV, Queer, and non Queer publications, I realized that from now on the first thing everyone is going to know about me is that I am living with HIV.
When you google my name, Charles Sanchez, it’s the first thing that comes up. I was shocked by that. I realized I’m not just an advocate but for a lot of people, I am the face of HIV.
That was both a surprise and a bit weird to think about. There is a big difference between telling your family, friends, or even co-workers and having strangers know I’m HIV positive before they know me.
It’s a bit of a mind-fuck. It doesn’t bother me because I don’t think it’s something to be ashamed of. It’s how I make my money and work in my community but at first, it was jarring that HIV was my identifier.
In addition, Merce was one of the first characters living with HIV to be in a comedy. People within the POZ and LGBTQ+ Community got mad at me. They said I was making fun of HIV. When I heard that it was clear they hadn’t seen the show because I am not making fun of HIV.
Q4. What language or terms used within the HIV world are misunderstood, misused, or misrepresented?
Dirty. To ask someone if they are clean is a stigmatizing horrible thing that people say when they are trying to talk about HIV status.
Also, the misunderstanding of PREP and U=U. They are amazing tools we have to keep people safe and they are looked down on a lot.
There needs to be more people who can be on PREP on PREP. Actually, the CDC will be rolling out a PREP program aimed at the Black and Latino communities which have the highest rate of new infections in the U.S.
I think there is a stigma if someone says they are on PREP. I especially think that is true for cis white women. There is a stigma about it that shouldn’t be. It’s just a medication that can be helpful.
The same is true for U = U. It stand for Undetectable equals Untransmittable. I don’t think many people know what it means or talk about it.
It means that I, as an HIV-positive person who takes his medication regularly have an undetectable viral load. The virus has been suppressed so much that it cannot be detected in tests. Therefore, I cannot give it to another person. It’s impossible.
This was incredibly freeing for people like me. I started testing undetectable a couple of months after I left the hospital. I have been undetectable for almost 21 years.
People don’t understand what U = U means and the power of it especially to someone living with HIV.
Lastly, sometimes people use HIV and AIDS interchangeably. They are two different things. HIV is the virus. AIDS is what you get when you are very sick and the virus has taken over your immune system.
Q5. What is the one stigma about living with HIV you wish would go away and why is it important to you that it does?
It’s the slut-shaming. It accompanies being called dirty. We have such a hangup about sex in this country.
It’s the automatic belief that even if you are asking for an HIV test you are a slut. It can’t just be that you need or would like a test but you are a slut, a drug user, low, poor, or otherwise undesirable.
It’s the undesirable category that I wished would go away.
Something that I learned a couple of years ago that baffles me is that women have to ask for an HIV test. It is not automatic when they go to their gynecologist or get their annual exam.
Worse is when they do ask for it, they often get pushback from the doctor. The doctor insists on knowing why they want the test. It’s shocking and sad that someone would not get an HIV test if they need or want one. That’s the opposite of what we want.
Q6. Bursting Through loves sharing Easy Activisms. Easy Activisms are simple daily things everyone can do to live their Allyship values out loud. What are three Easy Activisms that will make all of us better Allies to people living with HIV?
Don’t be afraid to talk about HIV. No one talks about it anymore because it’s not in the news like it once was. It’s important to talk about it, especially if you have kids. It’s important just to ask them (at the appropriate age) if they know about HIV. Have a conversation even if it’s just two to three sentences.
Get tested for HIV. Also, if it’s appropriate, talk to your doctor about going on PREP.
Educate yourself. Watch my web series, Merce, and read my articles on thebody.com and POZ magazine. There are many places where you can find accurate information about HIV like the CDC and the National Institute of Public Health websites.
Thank you Charles for your sharing your story, your wit and your wisdom. I’m just about to begin season 2 of Merce. I can’t wait to see what he sings and dances his way through next.
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