HIV positive

This is the first interview from South Africa, exploring themes of being HIV positive and coloured in South Africa, and how more work needs to be done by younger LGBT individuals.


 

  1. Why did you agree to be interviewed on sexuality and HIV/AIDS?HIV/AIDS is an area that I’m quite passionate about. I was infected at a relatively young age (22). It has been a life-altering experience for me and I am keen to share my story with others who might benefit from it.
  2. What was the first moment you realized HIV/AIDS was part of how you understand your sexuality? For a long time before I was diagnosed as HIV positive, I was afraid of getting infected with the virus. Thus, for me, it was part of how I understood my sexuality long before I was actually infected with it. The prevailing stigma and HIV/AIDS being characterised as a ‘gay plague’ had seeped into public consciousness and affected the way I viewed my sexuality. Also, interactions with other gay men were marked by discussions around HIV/AIDS (‘Are you POZ or NEG?’) and the gay world appeared to be split into HIV negative and HIV positive men. Once I was infected, my identity as a gay man changed from an HIV negative gay man to an HIV positive man, which affected much more than just my health status.
  3. What is your current relationship status? Single
  4. How often do you get tested for HIV or other STIs?
    I get tested for STIs twice a year.
  1. Do you have a doctor who you feel comfortable talking to about sexual health issues?
    Yes, I met this doctor soon after my infection and started anti-retroviral treatment with him. We have been able to openly discuss risks, treatment, side-effects and other aspects concerning sexual health.
  2. Do you have any strategies you use to talk about HIV and sexual health with your partner(s)?This remains a challenge. If it’s a purely sexual encounter, I disclose if asked about my status. There are times when I do not disclose. One strategy is bringing up the idea of bareback sex and seeing how the other guy reacts. If we are dating, I tend to wait until after a few dates before I mention that I am HIV positive so that I give my partner a chance to get to know me as a person.
  3. In your experience, how has race and socioeconomic status affected the way you talk about sexuality, HIV/AIDS, or understand your overall sense of identity?In the South African context, both race and socioeconomic status have had a significant impact on the formation of identity. South Africa remains a racially divided landscape; this division is often along colour lines. We have come very far in the last two decades. However, significant challenges remain in this regard. As a person of colour, I feel that my race has impacted the way I view my sexuality and other aspects of my identity. HIV definitely does not discriminate along racial lines. However, access to treatment is very much dependent on socio-economic status and this if often linked to race. I’ve been lucky enough to always be able to access the treatment I require. Despite this, I can identify with sectors of the population who have a combination of stigma based on race/socio-economic status and HIV status.
  4. Have fear or stigma shaped your behaviors or conversations with sexual partners? Why or why not? Stigma has certainly made me more unsure about being open and honest about my HIV status. This has at times led to downright lying about my HIV status or sidestepping the question. HIV infection and transmission, the meaning of ‘undetectable’ or ‘pre-exposure prophylaxis’ are still so poorly understood in this context that I have often been instantly discriminated against when a sexual partner has learned that I am HIV positive.
  5. What tangible strategies might combat fear or stigma on conversations related to sex? A strategy that I think is of crucial importance is to target men who are already HIV positive. Many prevention campaigns and messages in the media after the initial HIV scare were directed towards uninfected individuals. The message was essentially to avoid infection at all costs. This made perfect sense. However, it has not always worked well. The downside of these types of campaigns was that if you were already infected, you were seen as a ‘lost case’. This was and continues to be very unfortunate. The fact of the matter is that an HIV positive individual needs to infect an HIV negative individual with the virus. If that HIV positive individual is more aware of risk, takes good care of themselves (including adhering to medication routines, maintaining an undetectable viral load, keeping in good general health and testing for other STIs), then there is a much reduced chance of infecting others. They can also be instrumental in terms of opening up the conversation and being a ‘positive’ role-model. Many negative individuals tend to be incredibly fearful of HIV infection and are not fully educated. Thus, we require HIV positive individuals who can say: ‘I have HIV, I’m healthy and I’m living my life to the fullest.’
  6. Particularly among men under 30, HIV infection rates remain high and treatment rates remain low. Do you have any ideas as to why this might be the case? I believe this links to my previous answer. The blanket of shame has never been fully removed. The same factors that led to an explosion of HIV/AIDS in the 1980s and 1990s are still operating today. Seeking treatment after infection also remains a sensitive and stigma-drenched issue. A slightly more recent reason for this nowadays (that I’ve frequently encountered) is the thinking that says you’re stupid to have caught HIV after all the prevention messages over the last three decades. Some people believe that we should not be concerned about it as a health crisis anymore. Even though it may be true that it has become a chronic and manageable illness as opposed to a fatal one, it is not viewed the way other chronic illnesses are viewed and this affects how it is managed. Unfortunately, whereas having diabetes does not say anything about you as a person, HIV/AIDS apparently still seems to say that you’re a slut, stupid or you somehow deserved a punishment from God.
  7. Have you been involved with programs related to HIV/AIDS advocacy?
    1. If yes, which programs? No.
    2. If none, why haven’t you gotten involved with these advocacy programs? I would like to be more involved. However, many programmes I have come across still tend to in some way blame the HIV positive person (even if it’s very subtly).
    3. Are there any programs you think are particularly successful? Any that may target HIV positive people in an empowering way.
    4. Do you feel there are better programs that could be put in place? Absolutely. See above answers.
  8. Describe your work [depends upon age] with older and or younger generations in terms of sexuality and HIV/AIDS advocacy? Not applicable.
    1. If no intergenerational work, why are there divides between generations of queer men?
    2. How can generational gaps be bridged? I believe that older men with HIV/AIDS have had a very different experience of the virus. Sharing their stories with younger men is of great importance. Some younger men tend to have an invincibility fallacy and do not believe that they can be infected. There has been little discussion amongst younger generations. They may have some awareness but do not grapple with the deeper issues around HIV/AIDS.
  9. Do you have any favorite artists who have created work that talks about sexuality or HIV/AIDS? And/or have you created any artwork that expresses your beliefs about or experiences around sexuality or HIV/AIDS?”
    1. Who are they? // What kind of work? Adam Levine (South African writer) wrote a book called Aidsafari. It was a memoir relating his HIV/AIDS journey. It was incredibly honest and candid. This gave a very real view of HIV/AIDS on an individual level.
    2. Why does their work resonate? // Are there any plans to create more work? It resonated because it was a real-life experience told very honestly. I could relate to parts of it.
  10. What advice about sexuality or HIV would you give to younger men who are having sex for the first time? They need to make conscious choices and act wisely based upon the facts. I would tell them not to fear HIV infection to the point where anxiety clouds their judgement but rather to be aware of the risks and how the risks can be managed. HIV infection remains a possibility but life does not end if it does happen. These days, medical facts alone are enough to go a long way in preventing infection (in addition to condom use, pre-exposure prophylaxis or managing risk with bareback encounters, such as having bareback sex with an undetectable individual, can minimise chances of infection). I would also tell them to learn how to have more conversations around sex, HIV/AIDS and other STIs. If a new generation of HIV negative young men have conscious sexual encounters with HIV positive men, most of the battle will be won.

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.

//

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.

//

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.

//

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*).

//

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.

//

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.

//

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.

//

This is the first in the series of interview prompt responses detailed earlier at Our Viral Lives. These prompts are intended to allow people to take time to think about HIV/AIDS without the direct pressure of an interview situation. These same people might be interviewed and recorded in a more complete way at a later date. These entries are edited only for certain punctuation and spelling errors. Otherwise, they are left as the author originally wrote them.


I’ve been living with HIV since 2013. After a long year living in Madrid, I came to México to get diagnosed with HIV. I remember that day as one of my worst days in my life, full of fear. Even though I’m living a very healthy life being undetectable, HIV is full of fear and prejudices that can end up in a depression and anxiety symptoms, like me. Living in México City life as a young gay men living with HIV sometimes has to be in silence for being afraid of rejections. Profound relationships can be hard to handle and the way you manage your sexuality sometimes is like peeling an onion, you might cry discovering your true sexual being, taking out all your beliefs.

 //

Vivo con VIH desde el 2013. Después de vivir un año Madrid, regresé a México para ser diagnosticado con VIH, recuerdo ese día como uno de los peores en mi vida, lleno de miedo. Aunque vivo una vida muy sana siendo indetectable. El virus esta lleno de miedos y prejuicios que pueden terminar en depresión o síntomas de ansiedad, como fue mi caso. Viviendo en la Ciudad de México como un joven gay portador de VIH algunas veces puede ser en silencio por el miedo a ser rechazado. Relaciones profundas  pueden ser difíciles de manejar y la forma en la que manejas tu sexualidad algunas veces es como pelar una cebolla, puedes llorar en el descubrimiento de tu verdadera identidad sexual, quitando todas tus creencias.

I feel like living in a world and talking so openly about queer sexuality and HIV/AIDS leads to a constant sense of alienation and disconnect. But what could happen if there was an easy, visual way to showcase that people living with HIV, who have experienced the loss of someone with AIDS, are on PrEP, or otherwise are confused about which sexual health services cater to LGBTQ-identified people? It seems like some of the silence, stigma and sense of disconnect could be lessened.

As I started to think about what Our Viral Lives could do, I again gravitated toward the idea of using digital tools. Having something that can be easily accessed around the world would allow more people to connect more easily, and thus the “Sex Without Boundaries” map was born. The idea is that if you’re poz, if you lost someone to AIDS, want to mention you’re on PrEP, or have a sexual health resource to share, you can.

This map will serve to build up more and more people over time to highlight the idea that we’re not alone, that there are people who share in our experiences, and that we can be empowered in our own communities to discuss sexuality and HIV if we haven’t already. Currently, anyone can reach out directly to Our Viral Lives at kyle [at] ourvirallives [dot] org to get added to the map. You can also send out a tweet here. All you need is your first name last initial, age, gender and/or sexual orientation, and HIV status, if you’re on PrEP, and since when.

(And if you have any other questions, don’t hesitate to reach out directly.)