May 16, 2013
It was 1993 when Cecilia Chung was diagnosed with HIV while living in San Francisco. Born Catholic, she thought she was being punished for coming out as transgender. "'You transitioned. You're an abomination,'" she remembers thinking. "'This is God's way of telling you He doesn't approve.'" After a rocky few years, Cecilia reconciled with her family and now maintains a relationship with both parents. She has worked for years as an advocate for other transwomen, HIV-positive people and people of color.
As a transgender Asian woman and a formerly incarcerated violence survivor who was also involved with sex work, her experience is connected to a number of groups that are vulnerable to HIV in ways that are often ignored by institutions. But Cecilia's real-life story is much more than a confirmation of statistics. In this interview, she opens up about her history with assault; how transitioning affected her former career in finance; her tips on dating; and her frustration at being an overachiever with a low T-cell count.
This interview was conducted in July 2012, at the XIX International AIDS Conference in Washington, D.C.
Can you start by describing how you found out you were HIV positive, and where you were in your life at that time?
Wow. That's a big question you're asking me, where I was at the time when I found out I was HIV positive. It was around 1993 when I tested HIV positive. At that time, I just came out to my family as being transgender. It was a very difficult time, because I had just lost my job, and my family was struggling to understand what it meant for me to be transgender. And I had a falling out with my family, which caused me to really separate from my family.
Because I was on the edge of being homeless -- as a matter of fact, I was temporarily homeless for a while. With no job, no place to go, I ended up in a very dark place. I did some sex work, and I also self-medicated. I actually got arrested a couple of times for solicitation.
At the time, I was living in San Francisco. I moved to San Francisco at the end of 1984, and I've been living in San Francisco since.
You said that you lost your job at the time that you also tested positive. Did losing your job have to do with your transitioning, or was there another circumstance there?
It certainly had something to do with my transitioning, I believe. I was actually working two jobs at the time. One was in a very conservative environment, and the other was relatively conservative, as well. My main job was in a financial company. I was fresh out of college. I got this really nice job working in the financial company, training their account executives to sell accounts. I'd get an override on their commissions. For someone who had just graduated from college, making a six-figure income, that's really good.
Then I had a second job, which was as a court interpreter in a neighboring county. That's a relatively conservative job, because I had to work with judges all the time.
When I first started to transition, I realized I really couldn't be working in that financial environment anymore, because it's very stressful and very intense. I had to get up at 3 o'clock in the morning, and I'd work all the way until the New York stock market closes. Then I had to wait until the Asian market opened, the Nikkei market, which is the Tokyo market, and watch it for another three hours. Basically, by then, I would have worked around 16 hours a day. That was taking a toll on me. So I decided that I would leave that job, and I could just work the court interpreter's job.
But shortly after, a judge started to notice that some physical change was happening with me. The judge asked the coordinator to ask me if they should address me as Mr. or Miss. So the coordinator approached me and she relayed the question to me. I was a little bit surprised. I guess, when I was starting to take estrogen at the time, I started to develop some breast tissue. But I didn't realize that the judge noticed it under my suits and my shirts. I guess it was kind of noticeable by that point. Shortly after, my contract with the county got terminated.
It's really hard to prove that it was because of my transition. But I guess, you know, that news travels fast.
Indeed. So then, soon after that was when you tested positive. What led you to get tested to begin with?
Because of some of the situations that happened with me even though I was very careful. I tried to be very careful, but there are things that happened during that time that were not in my control. For instance, when I was arrested, I actually was coerced into having unprotected sex while I was in the county jail. And that certainly put me at risk. I had no idea of that person's status, and it was a very unpleasant experience. I've actually spoken about that many times already.
Also, during my time on the streets, I'm not sure if my drug use put me at risk at all, or if there were any other situations that might have put me at risk. Because of that, I wanted to be safe. And I thought by taking a test at least I would have a baseline.
I did take a test a year prior to 1993, and that test result came back negative.
Your HIV-positive friend was the first person whom you told that you were positive. Was it because you knew that he was also HIV positive?
Well, he wasn't the first person that I told. I actually went with another friend to get tested and he was my support system at the time. But he moved back to Guam, so I haven't seen him in a long time. He and that friend are actually cousins. He suggested that I should talk to Vince -- that's my friend's name. So I took his advice to do that.
But the first person I talked to after that was my mom. It was very difficult for me, for many reasons. One was because I'm Chinese. There are a lot of values that, as a Chinese son, I was taught. [I was taught] that, when I grew up, I was supposed to take care of my parents and make sure that they live comfortably. I'm supposed to make sure that I provide for them. The thought that I might die before they do was something that I was never prepared for.
Second: Catholic guilt. I was raised Catholic. And somehow that whole idea, or that internal chatter, all started to talk to me, and say, "This is what happens. This is God's way of punishing you. You transitioned. You're an abomination. This is God's way of telling you He doesn't approve." It was very hard to bear. So I decided to pick up the phone and call my mom. I told her that I might die before she does, and I told her that I tested HIV positive. Even though, at that time, we didn't really have a good relationship, I thought I owed her at least that.
I don't remember telling her anything since, because there were really no other things I could tell her. There's very little I knew about what it means to be HIV positive. And I really tried not to think about it too much. I don't know whether it was denial or whether it was just that, subconsciously, I thought that, by not thinking about it, the virus would not catch up as fast.
Even though the counselor said most people only have six months to a year, two years later, I still didn't get sick. I tested positive in 1993 and I didn't really get sick at all for quite a while. Yeah. So ... knock on wood.
How did your mother react when you told her this? Did the rest of your family also find out -- whether you told them, or she did?
How did my family find out about my diagnosis? That, I would not know for sure. I think it took my mom quite a while before she disclosed that to my dad. I think she would pick up the phone and call my aunt in Los Angeles first, because they were very close. We all need someone to share everything with, and so no one's closer than your own sister, I guess. I think that she shared that with her sister, my aunt. That's probably all I knew at that time.
I really didn't know how we could process it. I felt really alone for a long time, because my family and I didn't reconcile until later on in my journey. My mom and I reconciled in the middle of 1995 ... truly reconciled in the middle of 1995.
How did that come about?
Not without more trauma. I continued to have a really hard life, but it never prepared me for more trauma. During that time, between 1993 and 1995, I experienced some sexual violence. And in the middle of 1995, two men were trying to sexually assault me. I fought back. One of them pulled a knife and stabbed me. I blocked it with my wrist and they punctured my artery. I screamed. They were chasing me in a parking lot. Somebody heard me scream. I passed out. They kicked me and the police came. They got arrested. I got rushed to the hospital. At the hospital, they asked me whom they should call. And I guess, when I was half-conscious, I asked them to call my mom. My mom came to the hospital. That's when we reconciled.
I think that's when my mom realized that my transition was not for fun, that it was truly who I was. I was just trying to live my true self. It was a long journey, but finally, I think, she got it. But it's a price to pay.
How is your relationship with your family, and your mom, now? Is she still with us?
I think that knife [attack], ironically, started the healing process for my family. Whatever blood bled out of me also helped to bleed out all the bad blood I had with my family. In many ways, the healing with my mother starts with her coming to the hospital, visiting me. And then, shortly after, more healing began.
In 1998, my mom decided to pay for my sexual reassignment surgery. That very year, at my birthday, my grandparents came with her and took me out to lunch. It was the first time my grandparents saw me as my true self, and my grandmother even told me that I looked beautiful. Because of that reconciliation, I got to spend more time with my grandparents before they passed away. My grandfather actually passed away in May of this year, and my grandmother passed away in 2004. So, without that healing process, I would not have been able to spend that six more years with my grandmother. And without this kind of relationship, I would not have been able to be by my grandfather's bedside when he passed away.
I'm really glad you were able to do that. It seems like it was really a long journey, but that it ended with you being able to have this connection. That's wonderful.
It really meant a lot to me, too. And today, I even have a good relationship with my father that is better than ever. Even when I was growing up, I didn't have this kind of relationship with him.
That's wonderful. So, now, switching gears, you had said that, around the time you were diagnosed, you had experienced homelessness, you lost your job and you were doing some sex work. How long did that go on for? How long was your housing unstable, and how long were you on the streets? What happened in your life to be able to start to change that?
Comparatively, I can't say it was extremely long. I couldn't say it was extremely short. In three years of time, I tried to sustain a job. But I couldn't, because everything around me seemed to be going through a roller coaster. On and off, I tried to go to a job. I tried to do some interpreter's work. I just couldn't manage. Because of that, I had to resort to doing sex work, to be a sex worker, just to put food on the table and pay my rent.
It lasted about three years, that kind of struggle, because it's really difficult to find a job. At the time, there was no protection for transgender people.
During that time, I was able to experience what it's like for people who are homeless and living with HIV, or at-risk with HIV. I've seen a lot in that environment. I really developed a lot of understanding. Because of that, I was very determined that, if I could ever get out of it, I wanted to contribute to that community. I think that it becomes a passion. It became a calling of mine.
So, when I reconciled with my family, I decided to start working toward that. I first became a counselor and I started working as an HIV test counselor, and also a counselor for residential facilities. Later on, I started working as a caseworker for a homeless housing program. From that point on, I started to find my voice, representing communities that are usually voiceless. And that's where I realized I could really make a difference. I think that people also recognized that.
In around 1998, I joined a nonprofit board, representing the transgender community. Shortly after that, I joined the Ryan White Planning Council. Then I started to really build up more community connections. I started to continue to build more bridges, and build more advocacy connections. And the rest is history.
Indeed. Did you find that, when you started to do community work, that it was an accepting environment, in terms of you identifying as a transgender woman? Or was there a struggle there, too?
Well, that's a very interesting question. I think that, for the most case, because I am physically petite and very unassuming, it's easier for people to assume that I was born a woman. People don't really feel as challenged by me when I disclose as a transgender woman. But at times, I find it very offensive -- you know, like the adjective they use to describe my community. And also because of that, I make it a point to own those terms: transgender. Because most of the time I think that it's really up to us how we want to identify.
In my case, as an advocate, I feel compelled to make sure every time I go into a room that I let people know that I am a transgender woman. I live under that umbrella term ... only because I don't want people to make any assumptions. Because in real life we make too many assumptions, and that costs my community a lot. Sometimes it also creates harm to my communities, especially in the HIV world.
How so? Talk a little bit more about that.
In terms of data collections, we have 30 years in the epidemic, but there is so little data being collected in the transgender community around the world. That's a case in point, right there.
It wasn't until recently that the U.S. Centers for Disease Control decided to collect some data, and even that data is not segregated. They lump transgender men and transgender women together, and just have one single item that lists it as transgender people, but our community is not a very monolithic community. It really doesn't speak to all the risks that we have. I think that that's really doing the transgender community a disfavor. And certainly it does very little for partners, who may or may not identify as men who have sex with men.
You may have touched on this already, but just to put a clear, fine point on it: What do you think is one of the greatest challenges facing transgender communities nowadays?
Passing legislations, of course, is one of many priorities. Health care access is one of many priorities. And recently, the national Prison Rape Elimination Act standards have been adopted by the U.S. Department of Justice. However, many states are still reluctant to implement those standards, feeling like the federal government is overreaching. And they continue to place transgender inmates into male general populations; that puts transgender female inmates at risk of being sexually assaulted. That's really something that we need to think about. Can you imagine someone like me being put into a male population in prison? Statistics have shown that LGBT people, in general, are 12 times more likely to be sexually assaulted, and that comes with risks of STDs and HIV, and also hepatitis C.
Those are not researches that we have done enough. I know that the National AIDS Strategy has called for every inmate going into prison to be tested for HIV, but it didn't call for every inmate to be tested for HIV when they exit the prison. So we really don't have a realistic picture of how HIV transmission occurs in prison.
Switching gears just a little bit, how has your own health been since you were diagnosed with HIV?
Knock on wood again; my health has been relatively well. I did have a health challenge about a year ago but, funny enough, it wasn't HIV related. Actually, I didn't know what was wrong with me. My face suddenly got swollen and I was becoming really tired really easily. I thought I was getting chronic fatigue syndrome, and I thought I was getting lipodystrophy on my neck and face.
It turned out that it was not related to that. It was more related to my body's reaction to the steroids that I was taking. It actually affected my adrenal gland, which caused it to not work. It actually caused a lot of problems at the time. We were worried that my adrenal gland was completely burned out. Luckily, it didn't happen and my adrenal gland eventually started working again.
That's good to hear. Do you take HIV meds now?
Yes. I'm taking HIV meds now. I'm taking it religiously. However, I think, because I am a long-term survivor, it's a challenge for me to get my CD4 number to climb up. It's always hovering around the 200 range. It's a little bit frustrating. I'm an overachiever, so that's not good enough for me.
What about your viral load? Is it undetectable now?
Currently it is. So I am not a 100 percent clear why the test is not saying below 50 copies. It's always saying below 75. I guess they're not using the other, more sensitive test. But yeah, I guess for all practical purposes, my current viral load is undetectable.
Have you ever had any problems or challenges with interactions between taking HIV meds and taking hormones, as far as your transition?
Yes, once upon a time. And funny you ask that. That's something that's always been an issue for a while. When I first started taking protease inhibitors -- and that's something that not too many people have done research on, I think, at that time -- but I didn't know what was causing it. I remember when I first started taking Norvir (ritonavir) back then, when those pills were like this big and you had to take six of them, twice a day. I was also taking my hormones, and I was getting nauseous all the time. I didn't know what was causing it. I was getting motion sickness, and I couldn't really be on the bus for more than two stops before I'd have to get off. I threw up all the time. And I had to constantly go to the emergency room.
Then, finally, one time a doctor in the emergency room asked me the list of my medications. And we looked at it. Then she checked my prolactin level and realized that my prolactin level was sky high. Then she was looking at all the medications and she realized that the Norvir was somehow making my estrogen levels increase. So it was very interesting. And I didn't know that.
It was at such a high level. It was a dangerously high level. And those are interactions that nobody knew about. But now that I'm taking such a low dose of Norvir, because it's a booster, I don't have to worry about that.
Just a couple more questions now. First of all, are you in a relationship now?
No. I am very single right now. So that's a short answer.
How do you handle dating when and if you do date, as far as disclosing your HIV status? Is it something you're up-front about, or do you have to wait until you know someone? Talk a little bit about that.
In general, I'm very open about being HIV positive. People can actually just Google my name and find out everything about me -- like how many siblings I have, where I'm from, what I do. So it's really hard to hide who I am. And I warn people about it, that I'm very high profile. So, if you date me, be forewarned.
I think that that's one good thing about living a very open life, right? So that's how I'm dealing with it, in general. If someone doesn't know about my status, it's a two-way street. I try to really look at how comfortable I am with the person before I decide to go there. Yeah. If it's just the first date, I'm not going to go into all the details. There's really no reason. But I'll drop enough hints about who I am. And if they want to go Google me, they can go ahead and go Google me and find out.
So, now, since this is a question that comes up a lot among people who read our site and watch the videos, do you have any advice for people who are encountering the dating world as HIV-positive folks, as trans folks? Do you have any sort of tips or anything that has been helpful to you, or things that you've learned along the way?
I think that for people living with HIV, it's really about their own comfort level with disclosure. It's also about safety ... if they feel safe enough to disclose or not. I don't believe in compulsive disclosure. That is certainly not a vow, you know, that you have to disclose everything on your first date.
But also, in the Internet era, the other option is that you can always do email exchange until you feel like you've got all the things that you need to discuss out before you meet. You don't have to feel like you have to handle rejection in person. So that's the two options.
I think that that's the same for transgender people. It's especially true. It certainly helps to find someone who is accepting before you meet. Otherwise, for transgender people, it's easy to put ourselves into very dangerous situations. If someone didn't know, and finds out in person, it's a more risky situation, at times.
Last question: How do you think that living with HIV has changed you?
That's a very complicated question at times. Living with HIV has actually made me appreciate life more. Because I cannot predict what tomorrow is going to be like. It also makes me in some way want to make a difference in everything that I do more than before. An example is I would rather choose a career that would be making a difference in people's lives than a career that's about making money and having status. In many ways, that's what I'm doing now. And I choose excitement over money.
I know that my mom, probably, if she heard that, she'd be shaking her head. But that's true.
Thank you so much. Is there anything that you'd like to add before we wrap up?
No. I think that's pretty much it. I think that we are in a very exciting time right now. I know that we talk a lot about treatment, treatment as prevention, but without really taking a deeper look at human rights, equality, and really about gender equality and justice, we will not achieve what we are looking at, which is universal access to treatment.
More importantly, I think that if we don't find enough resources, or equal resources, to put into research as we do in treatment, we will not be able to get any closer to a cure. Especially now, we're sitting here at the International AIDS Conference. I think that it's important that we continue to help start having those conversations with our colleagues.
With that, I bring this interview to a close. Thank you so much for talking to me today. It was wonderful getting to talk to you.
This transcript has been lightly edited for clarity.
Olivia Ford is the executive editor for TheBody.com and TheBodyPRO.com.