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Personal Story

Who Will Be There for Me? A Trans Perspective on Aging With HIV

August 31, 2015

Cecilia Chung

Cecilia Chung

I came to San Francisco from Hong Kong in 1984, when I was 19. AIDS was hitting the gay community hard then. But I hadn't heard anything about HIV -- people back home just did not talk about it. I only started hearing about it when I saw ACT UP's "Silence = Death" posters on the street. I learned bits and pieces of HIV education by reading posters -- that you couldn't get it by sharing a glass of water or a toilet seat. Those were things I would never have asked anyone.

In 1992, I began transitioning to being a woman. When I was growing up in Hong Kong, there were no resources for that, but here there was a community I could go to. I had many questions, and when I saw people like me, I realized that being gay wasn't the answer for me. That's how I really started to connect with the transgender community.

I started taking hormones 22 years ago, around the same time I found out I had HIV. But now that I'm 50, I find that there are very few studies of transgender women who take hormones as they age. We do know that if you're a smoker, taking hormones can increase your risk of blood clots. I am a former smoker, so I have to watch out for that. I've also found that there is no real research on the interactions between estrogen and HIV medications. I also worry that as a woman of color, there could be some differences in how my body reacts to the long-term use of hormones, but I also can't find any data on that.

As the first HIV generation is getting older, we have different needs -- like finding care for our age-related health issues, which may not be about HIV. Sometimes, it can be hard to tell which is which. And the list of my health issues is getting longer. I have an AIDS diagnosis, along with high blood pressure, and I've had several episodes of pancreatitis.

I started taking hormones 22 years ago, around the same time I found out I had HIV. But there are very few studies of transgender women who take hormones as they age.

I'm grateful that I live in San Francisco, which has culturally competent and patient-centered care. But even in this environment, I have encountered bias. About 20 years ago, I had problems with a surgery that led to a small bowel obstruction. I was in a lot of pain, but when I went to the E.R., they would not admit me. Because I was transgender, they assumed I was just trying to get drugs. Instead of examining me, they had security escort me out! A week later, I developed gangrene and was finally admitted to the hospital. I almost died from that experience.

Now, my doctor has recommended that I have my gallbladder removed, but I'm hesitant to go to the hospital because of my previous horrible experience. I know that's unlikely to happen again, but the fear is still there

I've been lucky to have the same doctor for almost 15 years, but at some point she's going to retire. Where will I get care then? I'm not afraid to see a new provider that my current doctor recommends, but if I were traveling and something happened I would be very leery about seeking care. I would have to explain who I am to new people, and that can be quite overwhelming.

I admit I've been avoiding dealing with aging -- that's my own denial. I never thought I would live this long, so now that I can actually apply for AARP membership, I find myself procrastinating about learning what I need to know about aging. I was caught off guard when I had to add high blood pressure medications to the already long list of pills I take. To be honest, I don't take my blood pressure as seriously as my HIV. I've been used to taking the same HIV pills for years, and adding more is tough. I have to take ownership of the fact that I am not as adherent to my blood pressure meds as to my HIV meds. If my doctor reads this, she's going to lecture me!

In Asian cultures, we often don't speak about issues like sexuality and HIV. A lot of gay Asian people never come out to their parents, especially if the parents are not here in the U.S. It's an unspoken fact that most Asians view HIV as a moral issue. You've done something bad. You didn't know how to conduct your life. HIV is the consequence.

What really hits home for me is that I don't know many transgender people who have survived into old age. It's harder for transgender people to live past 60 because there's a greater chance we'll encounter violence.

That same stigma applies to being transgender. It's not something we talk about. But now my mom lets me know if my aunt tells her she saw me on TV. I hope that means that they're proud of me. I don't come from a big family, and most of them are older than me. My mother used to ask, "Why do you need a partner? Why can't you just be by yourself?" But I worry that when my family is gone, I will have no one to take care of me when I'm older. That's a problem for a lot of trans people. They may have no one to take care of them when they age.

What really hits home for me -- and this is hard to say -- is that I don't know many transgender people who have survived into old age. It's harder for transgender people to live past 60 because there's a greater chance we'll encounter violence. I've experienced violence multiple times, and that's a common story. Whether it is anti-trans violence, intimate partner violence, or random street violence, the frequency is much higher, especially for trans women of color.

We have to make sure that transgender people with HIV have the opportunity to live to a ripe old age. Right now, that's a luxury. Many transgender women, because of the stress in their lives, end up choosing to take their own lives, or they lose their lives to violence or health complications like hep C.

If we really want to talk about being transgender and aging, we first need to talk about just giving transgender people the opportunity to age! There's still a lot of work to be done to get to that place. And when we get there, we need to have a lot of conversations around culturally competent care, not just for trans women, but for all HIV-positive people who survived the first 20 years of the epidemic.

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This article was provided by AIDS Community Research Initiative of America. It is a part of the publication Achieve. Visit ACRIA's website to find out more about their activities, publications and services.
 

 

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