I arrive in South Africa this upcoming Saturday, November 14th after nearly 8 months of anticipation. South Africa will be the furthest I’ve ever traveled from the United States, and the longest time I’ve traveled to one country outside of the U.S. The first two and a half weeks will be spent in Johannesburg and the final two and a half weeks will be spent in Cape Town.
I wanted to detail more specifically what I want to accomplish, outside of the call for written interviews.
On the surface, HIV has not had a big impact on my life. I’m HIV negative -or so the tests have claimed. I have used protection most times. And I don’t know many people who are HIV positive or who have shared that part of their life with me. I do not have big, personal stories to tell regarding the virus, and I’m not an activist. I’m simply a gay man who, like most others, has sex. That is, however, enough reason to engage in discussion: I consider myself part of a group of people where infection rates are higher compared to the general population, so simply turning a blind eye with inner hopes that disease won’t strike, as I have done before, is not a healthy strategy.
There are still many double standards that permeate gay life in Mexico City. Some are reminiscent of Mexico’s traditionally catholic and macho culture. It is in this context that HIV gets to play an uncomfortable role. There is definitely a stigma associated with the virus, a lot of misinformation and shame associated with being a carrier (I consider myself guilty of not being informed enough). For instance, once I was getting tested in one of the main clinics that specially caters to the LGBT population in Mexico City. I was shocked to feel scolded by the counselor that gave me my results in a conversation that felt like an attempt to bring shame into the table. As I said before, the test turned out to be negative, so I was only left wondering how that particular exchange would have been had the results been positive, when I would have been at a most vulnerable moment.
Lastly, and this is of course something I state from personal experience, I feel that is a consensus among some gay men on how casual sex is fine, as long as it’s safe. That’s fantastic. Yet to treat unsafe sex as an outlier to be rebuked is probably just to hold an unrealistic goal that may even do more harm than good. In the end, it states a line of thinking that dictates how people should act, and ignores how people actually behave. HIV is probably not going away, at least in the foreseeable future, but neither are risky sex practices. It’s an unfortunate combination, but the pressing matter is to know how to deal with it. Of course, I do not claim to hold any answers, but I do think it is of utter importance to open up dialogue.
I don’t live with HIV, but I coexist with it, meaning I had losses due to the HIV and some of the people I love the most live with it. I am 18 years as an activist on HIV prevention. I am part of the generation that heard about HIV when I was about 10 years old and from there grew up listening to prevention messages, especially misdirected and full of prejudice, which had the impact that my early sex life were full of fear, displeasure and prejudice. When I reached 18 years of age I began meeting with a group of young people my age to discuss issues affecting us as LGBT. At 20 I started volunteering at a nonprofit called Colectivo Sol, AC, www.colectivosol.org and have devoted much of my work to reduce stigma and discrimination related to sexual orientation, gender identity, and HIV infection.
Currently I’m working as project assistant for the Political Sustainability Project, funded by the International HIV/AIDS Alliance. Colectivo Sol is the linking organization for the Alliance in México. We are working on budgetary advocacy aimed to sustain the civil society response to HIV in Mexico given that the international donors and foundations are leaving Mexico due we were declared a middle-income Country by some international instances on economy. We’re training ourselves and other CSO and activists on Advocacy, specifically on Budgetary Advocacy so we can meet Members of the Chamber of Deputies in Mexico in order to ensure the government investment on HIV prevention and care.
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Actualmente estoy trabajando como asistente de proyecto para el Proyecto de Sostenibilidad Política, financiado por la International HIV/AIDS Alliance, que tiene su base en Brighton, Reino Unido. Colectivo Sol es la organización de enlace para la Alianza en México. Estamos trabajando en incidencia presupuestaria destinada a sostener la respuesta de la sociedad civil al VIH en México, dado que los donantes y fundaciones internacionales están dejando México debido a que fuimos declaradas un país de ingreso medio, por parte de algunas de las instancias internacionales en materia de economía. Estamos entrenándonos y a otras OSC y activistas en Incidencia Política, en específico sobre Incidencia Presupuestira de manera que podamos reunirnos con miembros de la Cámara de Diputados en México con el fin de asegurar la inversión del gobierno en la prevención y atención del VIH.
South Africa has been chosen as one of the places for Our Viral Lives to collect interviews because of its rich history of HIV/AIDS activism, its well-established archival materials, and the myriad of organizations committed to serving LGBTQ populations across racial and socioeconomic lines.
Like Mexico City, Our Viral Lives wants to begin by collecting written stories from individuals in Johannesburg, Cape Town, Pretoria (where I will be visiting personally) or any other surrounding areas. Any one of the following prompts can be answered by emailing me directly at kyle [at] ourvirallives [dot] org. Please include your first name (if you are comfortable sharing that), age, and city/town you live in. Feel free to answer in English and any other language you feel comfortable with.
HIV has impacted my life in both very positive and very negative ways. My experience with HIV started two years ago when my boyfriend back then disclosed his HIV+ status to me under unfortunate circumstances (I was breaking up our relationship cause I found him cheating on me). It caught me by surprise because, although we just had like 6 months being together, I trusted him so much. We even discussed the STD topic a couple of times, especially because for one reason or another, we already had unprotected sex. At that time, he told me he was free of any STDs and so I believed him. I was probably naive or stupid but I loved him and I couldn’t imagine he wasn’t being honest.
When he finally told me about his status, I was even more shocked of the way he spoke it out, I’ll never forget his words, OK, so you really want me to tell you what’s wrong with me? I’m going to die”… Now that I look back and analyse his phrase I realise how wrong it is in so many ways. He also had blamed me for giving it to him. I was totally overwhelmed because first, I was sure that before being with him I was negative and I couldn’t figure out how, had I given it to him, I got it.
That day [he told me] I went to the clinic to be tested and the result came out negative. He then told me the truth that he knew he was positive since two years. To my dismay the health worker told me the result wasn’t conclusive at that point because I had to wait at least a month and a half after exposure to be sure. So that whole month I waited was a nightmare in some aspects because being from a generation who grew up with movies like Kids or Philadelphia, I really thought I would end up seroconverting by the end of that month. Any simple change on my body was, to me, a sign of seroconversion.
My boyfriend didn’t help much to relief me,because he was always complaining of how bad it was to live with HIV. He even told me, a couple of times, that he was thinking of leaving his drugs because they would damage his body and he was especially concerned of his looks. So it was such a stressful time for me. By the time I could have myself tested again I was resigned in some way and I ended up assuming my responsibility. Nevertheless, it came out negative again. My boyfriend and I split a little after that; he didn’t want to be with me anymore even if I was ready to accept his positive status.
After that I became paranoid and I got tested at least every two months for a year. I couldn’t understand how it was possible that I didn’t get HIV. I started talking with doctors and began searching in specialized forums, where I became more aware of how HIV really works. I can say I learnt the bad way. I also started to realise how many poz friends I actually had but didn’t know of their status until I told them my experience in an attempt to understand this bad situation.
Now, after two years, I can say I’m a more informed person. I can say I’ve learned to appreciate my life and to take responsibility of my actions, even if I know for sure that under a correct treatment and early detection, HIV is not a death sentence. I have also realised that I would engage in a serodiscordant relationship with someone I love, as long as the other person is honest and responsible for himself, that is if he loves himself. This is why I think it’s important to fight the stigma of HIV, because I’m pretty sure my ex boyfriend lied to me out of fear. That doesn’t mean I justify his actions, but I wonder how much of this fear comes from a society that is afraid of what it ignores or misunderstands.
[Minor edits have been made in grammar, and one sentence has been changed for clarity sake. The author of the piece authorized these changes.]
El 17 de diciembre de 2014 di positivo en la prueba de VIH. Desde enero de 2015, inicié tratamiento antirretroviral y hoy en día soy indetectable.
The 17th December of 2014 I tested positive for HIV. Since January of 2015, I started my antiretroviral therapy and now I am undetectable.
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Desde niño tuve acceso a información sobre el VIH/SIDA (cómo se transmite, cómo evitar la infección, tratamiento, etc). Por ello, cuando mi prueba rápida salió reactiva, tuve una sensación de culpa, de haber fallado: toda esa prevención se fue a la basura. Ahora me doy cuenta que esta reacción tuvo su origen en el miedo. Especialmente, en el temor de lo que fuera a pensar la gente, del concepto generalizado que se tiene de las personas portadoras de VIH, de la forma en la que otros hombres gay se refieren a los que somos VIH+…
Since I was a child I got information about HIV/AIDS (transmition, prevention, therapy, etc). That’s why when the result of my rapid test came out reactive I felt guilty and got this feeling of failing: as if I threw all the prevention away. Now, I realize that my reaction was supported by fear. Specially, the fear of what would people think about me; the general idea about people living with HIV and how gay men refer to other HIV+ gay men.
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Durante estos meses solo he compartido mi estatus con una persona cercana a mí; aun no estoy seguro si quiero platicarlo con mi familia o con amigos cercanos, mucho menos con colegas del trabajo.
During these months, I have only shared my status with one person who is close to me. I am not sure about sharing it with my family nor my friends; I don’t even think about sharing it with my coworkers.
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Nunca he tenido pareja estable. Si la presión que sentía antes por no tener novio era fuerte, después del diagnóstico fue difícil permanecer en calma, pues: ¿quién querría salir con alguien con VIH?
I have never had a boyfriend. If there was a pressure to have a boyfriend before discovering that I was positive, after this I couldn’t even get calm, because: who would like to date an HIV+ guy?
En los primeros meses después del diagnóstico, perdí todo el interés sexual o el de conocer a alguien, principalmente por el miedo al rechazo. Ahora, me siento un poco más seguro, pero todavía con dudas. He intentado salir con chicos positivos, con el fin de evitar de entrada el tema del VIH como tabú. Me he dado cuenta que el tema no es ser negativo o positivo, sino compatir intereses, tener personalidad y un proyecto de vida (*respiro*)
In the first months after my diagnosis, I lost any sexual or dating interest, basically because of the fear of being rejected. Now, I feel a little bit more confident, but still with doubts. I have tried to date HIV+ guys in order to try to avoid the issue of HIV as a taboo in first place. I have realized that it is not about being negative or positive, but sharing interests, having personality and a solid project in life (*sigh*).
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Ir cada mes por mis medicamentos tampoco ha sido sencillo; pedir permiso en el trabajo a veces resulta incómodo, sobre todo porque saben que debo ir por medicamentos, pero no digo para qué. Seguramente pensarán en todas las posibles enfermedaded que podría tener… Pero me veo bien, me siento bien y cumplo mi trabajo, así que adivinar se vuelve complicado para ellos. Yo ya dejé de preocuparme por tratar de armar excusas; simplemente digo que tal día voy por medicinas y listo.
Going every month to get my medication has not been easy neither; asking for permission at my job has been quite awkward, since I told them that I need to go to get my prescription but I haven’t specified for what. I’m sure they might be thinking in many possible conditions that I may have, but as long as I look healthy, I feel good and do my job, it has turned out complicated for them trying to figure it out. I stopped worrying about what would I say every month; I just say I need to go to get my medication and that’s all.
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Tomar dos pastillas todos los días antes de dormir también ha cambiado mis hábitos; por ejemplo, una de las pastillas que tomo me provoca un poco de mareo y ansiedad, por lo que ahora evito salir de fiesta en las noches. Todavía tengo una alarma en el celular, pues tengo miedo de olvidar tomar mi dosis.
Taking two pills daily before going to sleep also has changed my habits. One of the pills gives me dizziness and make me feel a little bit anxious, so I try not to going out at night. I still set an alarm because I’m afraid to forget to take my dose.
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Por ahora, me siento más tranquilo. Sé que aparecerán nuevas circunstancias, personas y retos. No he ido a grupos de apoyo ni terapia psicológica por falta de tiempo, pero sé que eventualmente quisiera ir. Sé que vivir con VIH no es una sentencia de muerte, pero si sé que mi entorno aun es hostil hacia quienes viven con el virus. No voy a mentir: a veces quisiera no ser VIH+. Pero esta es la realidad y debo enfrentarla de la mejor manera. No es sencillo, los fantasmas mentales de pronto aparecen… Hoy por lo pronto, me dejaron escribir estas palabras.
Now I feel quite calmer. I’m aware that there will be new circumstances, people and challenges ahead. For lack of time, I haven’t gone to any support group or counselor; but eventually I would like to try these options. I know that living with HIV is not a death sentence, but I do know that the environment surrounding me is hostile toward people living with the virus. I am not going to lie: sometimes I wish I wasn’t HIV+. But this is my reality and I have to face it the best way I can. It’s not an easy job, sometimes my “mental ghosts” appear… At least they let me write down these words today.
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HIV has impacted my day-to-day life since I devoted my life to basic research about the virus. At the moment I am a PhD student in the National University of Mexico (UNAM), close to fulfilling the requisites for graduation, I do my research in the centre of research in infectious diseases (CIENI). It is a laboratory that belongs to the Ministry of Health.
HIV cure is the career focus of many scientists around the globe. It is essential to join minds and efforts in order to find strategies that could lead us to this elusive goal. Being a gay man growing in a third world country where stigmatization strongly affects the perception of HIV disease, I started my scientific career with the aim of contributing with knowledge that could someday lead to HIV cure. It is a motivation for me knowing that I can contribute to this goal, when I have been around young men that leave themselves to die of AIDS in my country because of stigmatization, ignorance and fear.
My research at the moment is contributing with knowledge on a model where two selective pressures (antiretroviral therapy and the immune response) could converge to limit HIV variation and replication. I have been able to find widely spread responses to HIV peptides that include drug resistance mutations, that could be included in therapeutic vaccines used in cure strategies such as the “kick and kill” approach to HIV control or the pharmacologic-immune control of HIV replication. I’ve already submitted the paper regarding this research. If accepted, it will mean a successful contribution to the field.
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In a recent post at Medium I laid a framework for conducting the first phase of Our Viral Lives interviews. I stressed participant-driven philosophy whereby individuals would have agency to talk about sexuality and HIV/AIDS, including those who don’t feel as comfortable speaking in English. As a result, I developed a prompt to begin the first stage of interviews. This can be answered at an individual’s leisure. If they wish, they can then choose to participate in a longer, in person interview.
If you would please to participate, please reach out to me on Facebook, Twitter, or email kyle at ourvirallives dot org. You can answer the initial prompt in either English or Spanish, depending on which you’re most comfortable with.
Our Viral Lives is being written as part of MA in Social Innovation and Sustainability at Goddard College. One of our graduation requirements is a written documentation of the project. This is technically a “thesis” but in the spirit of using unique narrative approaches to writing on sexuality and HIV/AIDS, I want to integrate academic, creative and non-fiction writing in a way that more resembles a publishable work.
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When I began this work on HIV/AIDS all the way back in 2008, I wouldn’t have realized one of the most asked questions would be, “What got you involved in this work?” or “Are you HIV-positive?” These questions are innocuous enough, but the more I thought about them, I started to wonder: why does it matter how I got started in HIV/AIDS activism? why is being HIV-positive a necessary precondition to write about HIV, a thing which affects all men who have sex with men in some way, particularly those under the age of 35.
I don’t think there are any easy answers to those questions. (And I’m not really looking for easy answers.) But the questions have fueled a fire in me to think about how to make our discussions on sexuality and HIV/AIDS happen in less reductive ways while reducing stigma and self-erasure. Admittedly, in the very early moments I started writing about HIV, I was self-censoring in every letter, sentence, and essay. Though I still write very carefully, I write from a place of critical reflection, not fear.
I’m consumed by another much more important question as a result of my own personal growth. It’s the question that helped shape the idea of creating an online digital archive called Our Viral Lives. How can narratives about sex and HIV/AIDS educate, empower, and foster innovative activism among younger people who are bearing the brunt of new infections today?
Our Viral Lives 