Speaking Out About HIV in Transgender Communities
An Interview With Dee Borrego -- Part of the Series This Positive Life
Welcome to This Positive Life! We have with us Dee Borrego. At 21, Dee not only received an HIV diagnosis, but came out as a transgender woman, struggled with a drug addiction and survived a breakup with her boyfriend. Thankfully, with the help of support groups and friends, she was able to overcome it all. In this inspiring interview, Dee talks about living and surviving HIV as a transgender woman; her parents' journey of accepting her for who she is; and the importance of speaking out about HIV/AIDS.
This is Olivia Ford reporting for The Body. Welcome to This Positive Life. I'm here today with Dee Borrego, and we're going to be talking about living with HIV.
Thank you very much.
You're welcome. Can you just start by describing how you found out you were HIV positive?
I found out I was HIV positive in 2005. I had gone to a doctor's office after ending a relationship with someone I found out was positive. It's a complicated story, which I can get into. I found out that this person had been positive, and we weren't using protection, so it prompted me, about a month, a month and a half, after we broke up to go and get tested. So, in March of 2005, at my regular doctor, my family doctor, I went and got my test results. On March 4, I received a positive diagnosis.
How old were you then?
I had just turned 21. My birthday's in January, so I was 21 and a month and a half or so.
So now what did you think and how did you feel when you first heard the news?
It was an overwhelming time. It was really scary. I must admit I was woefully uneducated about HIV at the time, so I really had a lot of misconceptions about what it meant to live with HIV. I had a lot of ideas that really were very antiquated. I assumed that after my diagnosis I would be dead within three years. I was like, "OK, well, I might as well live it up 'cause nothing much going on."
I had never to my knowledge at that point really been involved, either as a friend, a family member, or even just a member of a community with anyone who was HIV positive. I mean, I was a member of the queer community but I really had not interacted at that point with HIV-positive people. So it was really scary.
I didn't know who to turn to. I was in a very small town. I had my family and my two best friends there with me, thankfully. But it was a very scary time. I think I started crying the minute the doctor told me, and didn't stop for about three days.
I remember sitting in that little room in the doctor's office. She came in. I don't think the doctor had ever told anyone they were positive before. And she came in and she told me and gave me two little pamphlets with information and that was it, and gave me a phone number to call to get connected to services near where we were living.
Where were you living?
In Connecticut; I was living in a small town on the Connecticut-Massachusetts border. And so she gave me some resources but it really wasn't very much. You know, I really didn't know what to do or how to deal with what was going on. So, like I said, it was just a really scary time. In retrospect, I really wish I had maybe gone somewhere that had more experience dealing with HIV, maybe a place that was centered for gay or lesbian or queer people. Or the queer community might have been a better choice because they might have had more information that really would have been sensitive or more appropriate to my needs.
At the time, I was also just coming out as a transgender woman. So it really would have been nice to have had materials that were sensitive to where I was at in my transition, where I was at emotionally, and that could educate.
When did you first start to come to terms with your diagnosis, and start to recognize that you weren't actually going to die in just a few years? When did you start to actually seek information that felt like it was more made for you and geared for you?
Well, it took a couple of months after my diagnosis to really start to accept it, and to start sorting through the wealth of information that really comes through once you start getting connected into the community. As I said, my doctor really didn't provide much. But once I started getting connected with other HIV-positive people, and with agencies, there really is a large amount of information, some of it very technical and boring, some of it really engaging, some of it just sort of there. And it took a little time to start really accepting it and to read through things.
And I found for myself that really going online, reading the pamphlets, reading and connecting with other HIV-positive people and people who were going through what I was going through, as someone who just found out, it's a really scary time. You're not sure what any of this stuff means. What do the labs mean? What? You know, how to understand what they mean took some time.
So now were you ever able to talk to the person, the partner, who you got HIV from? Because it sounds like you were in a relationship and you found out that person was positive.
So did you ever reconnect with that person or tell that person about your diagnosis? How did that go?
Reconnecting with the person who infected me was a complicated process. Our relationship had been rather brief, but very intense. We dated for approximately six weeks, during which time he had been using a lot of drugs. I had also been using drugs at the time. So it was a bad scene, for lack of a better or clearer term.
About six weeks into the relationship he disclosed to me as being HIV positive, after we had been having sex for most of the relationship, and had not been using condoms. So I freaked out, and we ended up breaking up over some other issues unrelated to his HIV diagnosis.
He had claimed at the time that he had just received his HIV diagnosis while we were together, but had withheld it from me because he was afraid I would dump him over something like this. I told him I could deal with being in a relationship with an HIV-positive person, but he had told me he was going to stop using drugs. And I went away for four days and came back, and he was using more than ever. So this was the root cause of our breakup, to be honest.
I didn't see him after the breakup because it was, unfortunately, violent. He pulled a knife on me and became very threatening. The police were involved. And a restraining order was placed on him afterwards. He was due in court unfortunately -- well, not necessarily unfortunately -- but he was due in court on an unrelated matter about a month and a half after he and I broke up. So I decided to just let sleeping dogs lie. He actually did end up in jail for this unrelated matter to me, for about a year and a half.
Since that time, I've seen him once. I ran into him in public here in Boston one time. It was very awkward. We didn't really have much to say. I was very, very mad at him for a very long time. I mean, it's really hard to forgive someone who's changed your life with callous disregard.
I hear that. So now how do you decide nowadays -- and even back then, closer to the time of your diagnosis -- how do you decide when or whether to disclose your status to somebody?
Well, when choosing to disclose, it's a really delicate and important issue that I think all HIV-positive people have to face. For me it's very dependent on the situation, as to exactly when I will disclose with someone.
I think disclosure is really important. I think if we, as HIV-positive people, don't share our voices and let it be known that we're here, the community isn't going to keep record of us. They're not going to look out for us. They'll allow us to become an invisible minority. The only way that people know about HIV, and how to protect themselves from HIV, and how to help those living with it, is if they know people with it. So I think disclosing feeds into activism, in some ways, that every time you disclose it's an act of activism. It's an act of claiming your own voice and saying, "I'm here, and I'm just as valid as you are. My opinions matter just as much as yours. My vote matters just as much as yours. My money is worth just as much as your money is worth."
I think it's really important that we, as HIV-positive people, remember that power that we hold to educate those who aren't HIV positive, or even those who are. By disclosing to our partners, and to our friends, and to our family, I think it can be a really powerful way to keep activism and keep the spirit of fighting HIV alive. Because I definitely think in the year 2011, HIV activism has certainly waned from what it once was, back in the '80s, or even in the '90s, to a point.
What are some of your experiences with activism? How did you first start getting involved with the HIV community on a sort of more activist level?
I actually got involved with the HIV community as an activist rather quickly. It wasn't entirely a planned move. It just sort of happened. Right after my diagnosis was the 25th anniversary of the HIV virus, in 2006. So my therapists and my case manager had found an opportunity to make a short film for MTV about living with HIV. So I decided to do that. They did select portions of it that were aired, which was very cool, to be 22 and be, like, "Oh, that's me on MTV!" Even though it was only like 30 seconds, but still.
So that was the first foray I did into it. I'd had a lot of experience doing public speaking when I was younger. I had had a lot of experience in theater and performance art, so I feel very comfortable in that arena. I just felt like I have a voice, and this is part of the plan, and this is part of my journey, and part of my path is to use the voice and the strength that I have to go out and talk and to educate people about HIV.
So, pretty quickly after I was diagnosed, I had done that film. And then after that film, I took a little bit of a break from activism. I was just doing things here, around Boston, more local things, being involved with varying organizations here.
And then in 2008, I was invited to join the Positive Women's Network [PWN] . I was actually one of the founding members of the PWN at the convening in San Francisco, where about 30 women from across the U.S. gathered to form an organization by and for HIV-positive women that does some really wonderful work.
So I went there and I've done some work with them. After that, I actually started working in HIV services as a trainer, and as -- I'm trying to remember the exact title -- I think the title was client advocate. I would educate people on the importance of meds and taking your meds correctly.
Then I forayed into working with the Positive Justice Project in New York, in the last six months or so, working on decriminalization of HIV laws throughout the U.S. and internationally. And in September of 2010 I was selected to speak at the U.S. Conference on HIV/AIDS,in Orlando, Florida, which was a huge honor. The focus was on youth, and I was the transgender youth selected from across the nation to speak and represent my community on a national stage. So it was a great honor and a great opportunity to really educate people about the issues facing transgender people around HIV.
There's no hard data around transgender people and HIV in this country. There are varying studies from varying cities, like Boston, San Francisco and Seattle, I believe. And I believe Houston, as well, has a study out. I'm not certain on that, though.
Based on what limited data we have, the belief is that the prevalence of HIV in the trans community might be as high as 75 percent. So that's a very, very large portion of the community. And within even the trans community it goes higher within ethnic minorities. Like, the African-American community has even higher prevalence rates, based on what limited studies are available.
So HIV and transgender people are really intertwined in this country, for many reasons. I feel that, as a transgender person who's able to stand up and speak openly and publicly about these issues, I really feel that it's my duty to do so.
That's interesting. What do you think is the barrier that keeps other transgender folks living with HIV from standing up and being sort of open on a national stage, or a world stage, as you've said? What are the factors that hold more people back?
I think there are a lot of different factors that really hold transgender people back from being open about their status, either as a trans person, or as an HIV-positive person, if they are HIV positive. It's hard to say what the biggest one is, but I think fear is a huge motivator. Violence against the transgender community is, unfortunately, despicably high, as evidenced by the Transgender Day of Remembrance held every year in major cities across the world, and in towns and universities, as well.
You know, violence against trans people is so high, I think fear of violence is a huge motivator. Many trans people are forced to the edges of society, both in this country and in other countries, being forced into prostitution, into drug work, into other forms of illegal ways to support themselves, because they cannot survive in mainstream society. People don't want to accept them because the way they look, or the way they act, or the way they dress, or just for being different, basically.
So I think it's really a big barrier. Many of the girls I know, speaking of the transgender women, and many transgender men I know, as well, too, they find that living within the confines of regular society can be really challenging. You know, there's discrimination. People will laugh. People will make fun of you. People will threaten violence. Employers don't have, in many places, do not have any legal requirements to maintain your employment if they know that you are transgender.
HIV, of course, is protected by the Americans With Disabilities Act. So they cannot fire you for being HIV positive, but it's certainly not uncommon, in more rural areas, or even in some urban areas, that people will not be offered a job if it's known they're HIV positive. You know, they'll find some reason.
I've personally had that happen where there were a number of jobs I applied for that I was at least decently qualified for that I was not offered. Maybe it's because I'm transgender. Maybe it's because I'm HIV positive. I can't prove anything. But certainly discrimination is a huge factor in the trans community and in the HIV community.
So I think those two intertwine and meet with poverty, because so many trans people can't get regular work, and because they're forced into things like prostitution and drugs. Poverty becomes another large factor here. They're so intertwined together, all of them, that I think it just makes it nearly impossible for a lot of trans women, and a lot of HIV-positive women, to really be open in public.
There's a lot of shame in this society, in this culture, around being a woman, in general. Being a trans woman, specifically, is quite shaming in this society. And being an HIV-positive woman is equally shaming, if not more so, as well. So I think there's a lot of societal pressure which factors into why there aren't very many women like myself who are willing to stand up and be so vocal in public about their identity, and their history, and their truth.
Did you come out young?
I came out fairly young. I think I came out, at the time when I was growing up, I identified as a man. And so around puberty, I identified as a gay man. So I came out to my parents as a gay man when, I think, I was 14 or 15. So, pretty young. And then I came out to my parents as a transgender woman when I turned 21.
The great story in my family is, I remember, I told my mom while we were driving in the car that I was gay. And she said, "I would have been more surprised if you told me you were straight." And imagine her shock, six years later.
Indeed. I mean, when you've already come out to her once; you've already told her that you were gay.
Yeah. It was kind of fun to do it twice.
Right. No kidding. And also, you said that you told her that you were positive at the same time that you told her that you were trans. Wow.
I did. I hit my parents with the one-two-three punch. Also, I came out to them as being transgender, I came out to them as being HIV positive, and I came out to them about having had a drug problem, all on the same day. It was a very intense day, and it was a very intense emotional period.
I remember I was sitting on the couch and they both came -- well, no. I'm sorry. It was a very intense, emotional day. And I was sitting on the couch, and my dad came over and sat down with me. My mom was actually out of town the day I found out. And I told him everything I had to tell him, and I just started crying. I was really upset. Then he started crying, and he was really upset. And it was really hard.
He called my mom on the phone and he told her for me, because I was too upset to keep going. She was actually out of town, in Las Vegas, for my aunt's birthday. So she came back, like, the next day or the day after.
It was a really hard time. They were very upset. I was very upset. We cried a lot. You know, we tried to figure out what to do. We screamed. We yelled. It was typically family stuff, I suppose.
When did you feel, or when did it appear -- I know that you can't know exactly what was going on in their heads, you know, as parents -- but when did you feel that they started to sort of come to terms with this sort of one-two-three punch? Your positive status, and the fact that you had a drug problem, and that you were a trans, when did they integrate that, basically?
I think they integrated all of the things fairly quickly, especially by outside standards. And, for the amount of shock that they had undergone, I think they came about, they came around, fairly quickly. They actually were really not concerned about the drugs. They were really concerned but quickly came to realize that I was doing what I needed to do with my therapist, and with the proper psychiatric support around my drug issues. So that was actually fairly easy for them to get their heads around.
It was actually, the biggest thing they were scared about was because they knew how dangerous it was. So they were very concerned about it, but at the same time they realized that I was doing what I needed to do to help myself get better.
The HIV, it took them some time. It took them some time. That probably took a couple months, maybe about a year before they were OK-ish with it. You know, it took them a while to get educated on what it meant, just like it took me a while to get educated on what the labs mean, and what's good, what's bad, how to live with it and what it would mean for me in my life.
The trans issue took a lot longer. And that's still something that's ongoing. It's been a long process. It took them a long while. It took them probably about two to three years before they started using the correct name. They still don't use the correct pronoun very often. They do sometimes, but not very often. And they still occasionally use the wrong name. But they do; they're trying. And I know that they've gone to therapy. I think they've gone to PFLAG meetings (Parents and Friends of Lesbians and Gays meetings) to meet other trans people's parents, and to meet other trans people, and learn what it means to have a transgender child.
I think that has actually been the hardest thing on them, just because I think they can learn to live with the HIV, and they can learn to deal with that I had a drug problem in the past. But, you know, I think it's taken them a long time to realize I'm still the same person I always was. I just have a slightly different outside now that is more matching with the way the inside always has been. So it's taking them time. But they're resilient. I'm sure they'll come along. I'm sure.
Well put. So, now, switching gears a little bit to your health, specifically, what's your health been like since your diagnosis? Has everything been OK? Have you started taking meds? How's that area?
Well, as for my health, my health's actually been really, really good. I don't take HIV medication because my numbers have been really, really strong for the last six years, because I've been positive for six years, now.
When I was first diagnosed, my T cells were right around 600-650. And the viral load was very high. But within a month, two months, the T cells had gone up to around 800 or 900, and the viral load had dropped down under 10,000. And within six months, the viral load was under 1,000, and the CD4 count was over 1,000. So my numbers have actually maintained at about that level since then.
Certainly, there are fluctuations. But I'm one of the very fortunate people in that my body reacts to the HIV virus really well. I do have some side effects from it, of course. I have nausea a lot, and GI issues, and depression, which I had had before. But I certainly think having HIV can exacerbate it, to some point. So, thankfully, my health has actually been really good.
Indeed. Do you see an HIV specialist for your health care? Or do you just see a primary care doc?
I see a primary care. OK, sorry. So for my HIV care, I actually see a primary care doctor, who is here in Boston, who specialized specifically in youth, HIV and in transgender people. So he functions both as my endocrinologist, my HIV doctor and my general PCP doctor. So he's kind of an all-in-one-stop shop, which is really nice. I actually am very, very fortunate to have a doctor who is so knowledgeable and who can accommodate basically almost all of my needs as a doctor.
A lot of my friends, however, do have multiple doctors, like a specific regular doctor and a specific HIV doctor. And many of my trans girlfriends also have a specific endocrinologist or hormone doctor, to help them with hormones. But I'm fortunate. I only have one.
That's amazing. And it sounds like you have a good relationship with this person.
I have a very, very good relationship with my doctor. We've been open and honest with each other from the get-go. I think that honesty with your doctor especially is important as an HIV-positive person. Because they need to know what's going on. You know, they need to know what aches and pains you're having when you do your physical. That's certainly one thing I've had to get used to, especially not being on meds, I get physicals about three times a year. You know, just to make sure everything is still working the way it's supposed to be working.
It takes some getting used to go to the doctor as much as I do. And, like, getting blood work done every three months, it can be a lot. But I think finding the right doctor, and finding a doctor you have a really good rapport with is really important. If you can't talk to them, if you can't talk to your doctor about whatever it is you're doing sexually, or if you're using drugs, what you're doing for drug usage, you need to find another doctor.
So now you mentioned that your doc is an endocrinologist as well. So are you taking hormones now? And if so, is there anything you all have talked about, as far as, are there any additional considerations once you start taking HIV meds, and their interaction with the hormones? Or what do you know about that, basically?
OK, my doctor is also my endocrinologist, because I do take hormones. I take injectable hormones. They also come in pill form, and a patch form, for estrogen, that is. I believe testosterone only comes in patches and in injectable form.
I, unfortunately, don't know all that much about how HIV meds and hormones interact. I know HIV meds are broken down by the liver, and I know some hormones are broken down that way, as well, especially hormones in pill form. So I know there can be some concerns with how a person's liver is functioning when starting hormones and HIV meds. But I'm not on HIV meds yet, so I actually don't know that much about it.
I know it can present certain challenges, especially in people who begin to transition at an older age than I did. I started fairly young. I started in my 20s. So I know it can cause complications for people who are older. But I can't really speak too much on that, because I do not have that experience, unfortunately.
I hear you. That's totally fine. So now how do you access your health care? Is this through a community clinic that you have your doctor? Or do you have Medicaid? Or is it private insurance? How do you get your health care, basically?
I get my health care through the State of Massachusetts. I have MassHealth, which is the state-subsidized insurance. So they pay for my medical visits, my therapy visits, all of that. They cover most of my prescriptions, with a copay, I think, that's only a dollar. It's a very reasonable copay, when I have one.
I also have ADAP here in Massachusetts, the AIDS Drug Assistance Program, that helps cover some of my other meds costs. So sometimes ADAP covers some of them, but not all of them. So my medical care is actually really well covered here in Massachusetts.
I see my doctor and my therapist at the same community health clinic that serves primarily GLBTQ youth, 13 to 29, that's associated with a larger hospital and a larger community health organization that specializes in GLBT care. So my doctors are a smaller set of a bigger set, which is really nice to have such great care and access to higher up care in different areas that I might need.
I get my care at the Sidney Borum Junior Health Center in Boston. It's part of the Fenway Community Health Center, which is also associated with Beth Israel Deaconess Medical Center, and the Beth Israel Deaconess Medical Hospital. I really like the Borum. They're an awesome, awesome place with really good care.
The nice part is they specialize in care to GLBTQ youth, age 13 to 29. So my doctor really has a lot of experience working with youth. They work a lot with homeless youth, and a lot with young queer people living here in Boston. And it's nice because they're part of Fenway, which is a larger community health organization here in Boston that runs clinics. Fenway also does a lot of work with the GLBT community, in general. So it's really nice to be going to a clinic where I can have access to more services, and services that are sensitive to my community's needs.
Sorry to stop. This might go in the other back part. The only part of my medical care that really is a challenge for me is my access to hormones. The hormones, I unfortunately have to pay out of pocket for, which can be really expensive. My insurance covers one of my hormones, because it's a medicine called spironolactone, which has multiple uses, besides the primary use for me, which is hormonal, as an androgen blocker. But it has other functions so it is covered.
As I said, I smoke, so I need to take aspirin. And that is also covered. But the actual estrogen is not covered by my insurance, so I have to pay for that out of pocket every month, which can be very expensive.
Is there any activism at all going on around getting hormones covered by all of these different services? Especially, like, with ADAP, it would seem like it's a --
The issue with hormones in relation to insurance is a very complicated one. A lot of it has to do with the lack of understanding by the part of insurance companies for the medical needs of transgender people. In my opinion, that really is the crux of the entire problem.
As a transgender female, I was born legally male. So my insurance still lists me as legally male. So any male-related medical treatments or medications I might need can get covered. For example, if I had low testosterone and needed testosterone it would be covered. If I needed to have a prostate exam, it would be covered.
However, things that are typically female-associated, such as estrogen, breast exams, pelvic exams, are not covered. So because the insurance system is really set up for a two-party system, they cover one, and not the other. Well, once I've completed the forms and am legally female in insurance, I believe the insurance will then cover my estrogen. But at that same point, the insurance will no longer cover prostate exams that I might need as I get older, or any other male-body related health issues I may have to address at some point. For example, if I develop testicular cancer, that would not be covered by my insurance if I am legally female, though by that point, the estrogen would be.
So it's a very complicated, complicated picture that is really exacerbated by the fact that the insurance companies do not have accurate understanding of the medical needs of transgender people. Because I need to be able to have both. I need estrogen covered, because it is part of my diagnosis of gender identity disorder. It is a treatment for gender identity disorder. But I'm still going to need access to testicular exams, prostate exams, and other male-specific health needs, as well as mammograms, estrogen, etc., as time goes on.
It's a very, very difficult and complicated place, being a transgender person, in the medical community. And a lot of people I know who are transgender go outside of the system to access hormones illegally for that very reason. Because it's easier to obtain them in some places illegally than it is to obtain them through a doctor.
Dee, I'm really glad you spoke on that, by the way. Because that's something that I think a lot of people aren't aware of. It's a really unjustly perilous position to be in, definitely, with respect to the health system. So, thank you very much for speaking on that, definitely. We're close to wrapping up. How do you think, if it all, having HIV has changed you?
Well, I think living with HIV has changed me in a lot of ways because, in many ways, it's made me more self reliant. It's made me realize that I'm the only one who's in control of my destiny. I'm in control of the choices I make. I'm in control of, if I get up in the morning and go running for 10 miles, or if I decide, no, I need to save my energy and stay home today.
I think being HIV positive has really given me the insight a lot into myself. I think it's given me a lot of insight into myself, and it's given me insight into how I tick. I think it's helped me to change and realize that, even though things aren't always the way I want them, I can live with them. I can make the best with the choices and the options I have. I can find strength when I don't think I have it, and I can find support from people who I need, and who I love, when I need it. Especially going through my diagnosis, and going through that entire process, I really found that there were people in my life who rallied around me when I needed it.
And that's a scary thing to think that you really need them that way. But I think it's also a good place to be, and to know that I have them there if I need them. And I think after my diagnosis, I learned that I don't have to have them. I can find that strength from myself. And I think finding that strength inside me was a process that I might not have ever found if I wasn't HIV positive.
You know, dealing with the physical ramifications of living with the virus, the social ramifications, I think it all contributes to making me a stronger person. At least, I'd like to think it does.
I personally think it definitely does, for what it's worth. Do you have any advice for folks who were just diagnosed, or recently diagnosed, with HIV? My advice for people who are newly diagnosed with HIV is to breathe. I think one of the biggest things for me when I first was diagnosed was, I stopped breathing. I stopped doing anything but thinking about the fact that I was HIV positive, and everything was different.
Yes, everything is different. It's not going to be the same like as it was before. But just because everything is different doesn't mean everything has to change. And it doesn't mean anything will really change, anyway. So I think people who are newly diagnosed need to remember to breathe and to ask for help when you need it.
You know, it's OK. Some days you're not going to be able to do anything emotionally. Maybe you're just going to sit there and cry. Maybe you're going to need to go running around and scream. Maybe you're going to need to go spend some retail therapy. Maybe you're going to need to go to a group therapy.
Everyone's going to need to deal with it in their own way. And I think the best advice that I could give to someone newly diagnosed is to be kind to yourself, and to accept yourself for who you are. Being HIV positive is not all that I am. It's not who I am when I wake up. It's not who I am when I fall asleep. It's not the first thing I think of. It's not the last thing.
It's certainly hard in the beginning not to think about it, but that's part of the process. You think about it, and then you'll think about it enough. And just know that that day is coming.
Well, with that, we need to bring this interview to a close. But thank you so much for talking to me today, Dee. It was such a pleasure.
This transcript has been lightly edited for clarity.
Olivia Ford is the community manager for TheBody.com and TheBodyPRO.com.