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Letters to the South Asian Community

ON LIVING WHILE HIV POSITIVE | BY ANONYMOUS

Like many others, 2020 has been a very reflective year for me and as December 1st will mark the 32nd Annual World Aids Day, I am reflecting on my experiences as a Gay, HIV-positive man. 2020 will always be the year dominated by a new virus, COVID–19, which has widely changed the landscape of human life. There have been various parallels drawn between the two viruses, but for me, the fear of the unknown and, with that, developing a fear of each other is one of the most defining similarities.

In the West we are fortunate that HIV is no longer considered the death sentence it once was, it might not make the headlines that it once did, but it hasn’t gone away. In 2019 there were still approximately 38 million people across the globe living with HIV/AIDS and I am one of them.

Of these, 36.2 million were adults and 1.8 million were children younger than 15 years old. An estimated 1.7 million individuals worldwide acquired HIV in 2019 which marks a 23% decline in new HIV infections since 2010. This drop-in number is in part due to access to medication but it is also due to education.

My HIV journey began in 2005 while in my final year at university, I didn’t get an official diagnosis till the year after. Circumstances forced my hand and I plucked up the courage to take a test and confirm something that I already knew but didn't want to confront.

I’d consider myself to be an intelligent person and most of the time, rather rational. Looking back, that avoidance was bound by fear and denial. I was partaking in what would be considered ‘risky’ sexual behaviour, but I didn’t want to face the guilt and deal with the potential unchangeable repercussions this could have.

15 years ago if you indulged in the kind of sex I was exploring and enjoying, it was not a case of ‘if’ you became positive, but ‘when’ you became positive. In my naivety at the time, because I’d had a few lucky escapes, I thought I'd be fine and get away unscathed. However, unfortunately for me, viruses don’t discriminate and I became another one of the growing HIV statistics.

At age 24, receiving my positive diagnosis wasn’t a huge shock but it was also far from welcome news. I was a little indifferent at the time and very matter of fact, knowing I only had myself to blame. Looking back at that time I can say that I was in a state of shock and my indifference was denial about the impact that this news was about to have on me.

My diagnosis felt like a fulfilment of a prophecy that my mother had made when I came out. She told me “you’re going to get AIDs and die.” Those words played on a loop in my head that day and they have done, on and off at many a dark hour.

Like many LGBTQ+ South Asians, my sexuality has been the cause of both physical and emotional distance between myself and my family. They superficially tolerate me and my ‘choices’, but in avoidance of confrontation, they will never ask about who I’m with and the ins-and-outs of my life. My diagnosis made me create an even greater emotional distance between us, catalysed by the fear of being seen as more of a pariah and becoming a leper that was carrying a gay plague, which would have tipped the balance closer to disownment.

This was both a form of preservation for the relationship I had with my parents and also self-preservation to avoid any further rejection. In addition, it was a method to avoid having to live out the painful hypothetical scenario of what they would say or do if they found out, re-living the disgust and disdain that I had experienced when coming out. To this date, they still don’t know of my status.

Carrying all of this emotional trauma is part of the reason why I dragged my heels with starting treatment, a stint in intensive care with Pneumonia changed that. Up until that point, I’d been living “live fast die young” and pushing myself and my body harder, trying to prove a point; that I wasn’t this virus and that I wasn’t weak. I’d been fighting to be myself for so long and this became one more thing to fight.

Current HIV treatment practice now involves starting AntiRetroViral treatment as soon as possible, which works to bring a patient's viral load down to an undetectable level. This reduces the damage the virus can do to the immune system and helps stop the spread of HIV, as a person whose viral load is undetectable, is also untransmittable.

Modern treatments for HIV are far kinder to the recipient than those of the past as there are far fewer side effects. I have had very understanding HIV consultants at the clinics I've attended in the past 15 years, they have helped me adjust to a life which isn’t all about this virus and I’m fortunate enough that I’ve been given a treatment which is as close to swallowing a daily vitamin pill as can be. When I started treatment, seeing that pill was triggering. It forced me to face up to my mortality and meant I couldn’t hide from this virus anymore—up until that point I’d been running from it.

To date I’ve been on treatment for approximately 12 years, currently, I’m on my third treatment regime. I have been relatively lucky with my treatments and I’ve had limited side effects to my physical health, I’ve been able to go about my day to day life quite normally. There have been good periods and also bad periods but I am happy to say that currently, the balance between my regime and any side effects is good.

When it comes to my mental health however, the impact of the virus has taken a much deeper toll. It’s only now that I feel comfortable to discuss it publically—10 years ago, at a time before PrEP, there was still a lot more stigma attached to HIV. To this day, disclosure of my status is often met with rejection. This has led to a level of secrecy and anxiety around discussing my status and not wanting to put myself into a vulnerable position. There have been many times, post-disclosure, that I’ve been treated differently by partners, both emotionally and sexually and not wanting to be subjected to being asked if I was ‘clean,’ has led to me developing my own avoidance and prejudices towards HIV-negative men.

Post-diagnosis I’ve only had one relationship with an HIV-negative person and even this was very short term. This comes from not wanting to have to explain to the other person the ins-and-outs of living with HIV. Relationships are hard enough, and having the pressure of HIV on top of this isn’t something I have the emotional labour for, at this moment in time.

I’ve had a relatively normal work-life since my diagnosis, HIV has been the cause of much anxiety at times. I’ve abstained from disclosing my status on application forms to avoid prejudice and I’ve had some very difficult moments while adhering to medication and the side effects. In a previous role, I believe I was managed out of the position due to my HIV status and the impact my medication had on me. HIV is covered under ‘The Equality Act’ and all people diagnosed with HIV are considered to be ‘disabled’ regardless of their health status. All employers need to make acceptable adjustments around these. However, many people like me continue to face discrimination regarding their HIV status even to this day. The trauma and the stigma attached to HIV has dented my self-confidence and it’s often stopped me from exploring working positions overseas.

Living with HIV as a South Asian man has been lonely. It's isolated me from my community even more than coming out did. Partially due to my self-imposed exile but also through the distance that keeping a secret and having to continue to do so does to your personal relationships. When you combine these feelings with my initial experience of being rejected, and the trauma that I faced when I came out from within my community, it has made me wary of other South Asians. I can only assume this is a similar experience that others within our community have too. HIV is still very much seen as a 'gay disease’ and carries with it all of the cultural and societal prejudices of that label.  

However public I can be about other aspects of my life and my sexuality, living with HIV is one area that I keep very private and only share with those I truly trust. The fear that I had around coming out is nothing compared to the anxiety I have of my parents finding out about my status; I feel the tolerance that my family has towards me would be completely negated and I would be disowned. This secret would force them to be confronted with me as a sexual being, would highlight the sins I have committed in their eyes and with this revelation, I would bring shame to them. For them, HIV would be a testament that I was being punished by Allah.

I admire those who have been public about their status such as Ash Kotak. It is through their work and visibility that we can start to educate our communities around HIV and AIDS.

I hope my words can help others and to let them know that they aren’t alone.

More resources:

https://www.worldaidsday.org/about/

https://www.hiv.gov/hiv-basics

https://www.nhs.uk/conditions/hiv-and-aids/

https://www.tht.org.uk/

https://www.nat.org.uk/

https://stopaids.org.uk/