Living With HIV: A death sentence? Think again!

by Ese Johnson

University campus girls dressed in spaghetti-strapcrop tops and micro-mini skirts walking down the street in a pack which was a common representation of the much frowned upon sex workers in Nigeria…University boys in their saggy pants and backwards-facing caps hailing these girls in a manner that signaled culturally inappropriate promiscuity…background music blaring “HIV, HIV/AIDS is REAL!” and the big texts on screen read “ZIP UP”!

This was the manner in which I first heard about HIV and condoms. My younger self instinctively assuming that sex happened only between men and women, HIV was contracted by having sex with a sex worker, and condoms were only for university students on campus. It is weird to think how long these assumptions stayed with me and influenced many of my thought processes going forward. Sex, sexual health, sexual identity, and gender identity are not topics commonly discussed in Nigeria; generally they are considered taboo subjects, spoken of in such a negative way that it makes you want to run from them as far and as fast as possible. So it was no surprise that the first HIV and condom campaigns were depicted in a way that many Nigerians saw as undesirable. Just as these campaigns were going nationwide, I began to have my first crushes on boys around me and damn did this freak me out! I was indeed born with a double disadvantage!

As you may have begun to guess, I started having sex but never used a condom because it was not something I thought was for me; I was never taught about safe sex - hell, I was never even told about having sex with someone of the same gender identity as me. Mixed with the feelings of pleasure and euphoria, sex brought on constant self-homophobia, guilt, shame, and the feeling that I would one day be punished by a “higher authority” for my ‘wrongdoings’. In July of 2019, I felt this punishment had finally come in the form of news I never thought I would hear, of something I never imagined would happen to me. I was planning to start a master’s degree in Australia and was required to have routine blood tests for HIV, Hepatitis B and Hepatitis C. The result of those tests showed I was HIV positive.

 As opposed to the common myth of it being associated with gay white men, HIV can be contracted by anyone regardless of age, religious belief, political views, sexuality, gender identity! 

I knew from scientific facts I had stumbled upon previously that HIV was no longer a death sentence: If I was able to access effective antiretroviral medication then I could live long with the virus...but how long and how well? I didn’t know! I started my medication immediately and have been taking them ever since. Therefore dying was not my fear at this point, living was! Living with the virus and the stigma that surrounded it in the society I lived in, together with the guilt that I had finally been punished for my wrongdoings and had brought disgrace upon my family, felt to me worse than morbidity and death.

The months after my HIV diagnosis are sometimes still a blur: a mix of all sorts of emotions and experiences that I cannot fully explain. My HIV diagnosis affected my Australian visa application process and I could not continue my master’s degree as planned at that moment in time. The thought that an entire country more or less edged me out and never let me step foot across their borders made me feel more unwanted and undesirable than I had ever felt before. Amidst the pain and fear of rejection, I applied to a British university and in January 2020 I finally moved to the UK and began my masters with a focus on HIV/AIDS, stigma surrounding HIV, what it means to live with HIV today, and also how to eradicate new transmissions. In the months since moving to the UK, I have begun and continue to learn so much about the LGBTQIA+ community, living with HIV, HIV and AIDS, the global history of HIV and so much more. From this moment onward I believed in shaping a world where both myself and everyone else have the full knowledge of what it means to live with HIV, how to prevent getting infected by HIV, how to tackle inequalities for queer people, and most importantly how the stigma surrounding HIV negatively affects people’s lives, hopes and dreams.

Stigma still affects people living with HIV today.

I found a community of other HIV-positive people across various networks. These people began teaching me more about what it really means to live with HIV today, how the medication I take reduces the amount of HIV in my body--thus making me Undetectable and unable to Transmit the virus to anyone (U=U, or Undetectable=Untransmittable)--and also how to tackle the myths and stigma that surround living with HIV by sharing personal experiences and campaigning for change on many levels. These support networks came in the form of Terrence Higgins Trust’s Positive Voices (a project where people living with HIV share their stories), Waverley Care's SX-Project (which provides mental health and general wellbeing support for queer men living with HIV in Scotland), and friends who have become family to me. These organisations and people changed my life and my outlook on living with HIV.

It has never been easy talking openly about my HIV status or my sexuality--especially because I am fully aware that both subjects are things that form obstacles for me and other people like me in my home country, Nigeria. The fear of how people will react when I say to them ‘I am HIV Positive’ or the discrimination I faced after being told by someone on a dating app that they would not be able to be with me because of my HIV status (despite assuring them of my undetectable status), or the pressures of having to manage people’s reactions to my HIV status can sometimes be overwhelming; but these also push me to speak louder about HIV and what it is like to live with HIV today. I currently work professionally and campaign voluntarily in Sexual Health promotion with a goal to use the skills I have gained from my master’s degree, the experiences I have of living with HIV, and the scientific knowledge that is available today to support people on their journey of achieving the best sexual health and wellbeing outcomes for themselves. All of this scientific knowledge about HIV is readily available and you can also use it to educate yourself and others about HIV, stigma surrounding HIV, sexual health, and the plans to ending new HIV transmissions in the UK by 2030.

Today I know being a gay man is nothing to be ashamed of, and that living with HIV is nothing to be ashamed about. HIV is not a punishment from a ‘higher authority’; I can always access help and support in relation to my sexual health and HIV from multiple organisations if I need to; and wearing a condom is not a taboo subject and everyone should feel comfortable to use one. But, most importantly I know that testing for sexually transmitted infections (STI’s) frequently--especially when having sex without a condom, having sex with new sexual partners, multiple sexual partners or a sexual partner who has multiple sexual partners--is the best way to stay on top of my sexual health in relation to all STI’s. Therefore, if you have made it this far in this post, let’s strike a deal to get tested ASAP and advise other people we know to follow suit!

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Ese Johnson (he/him) holds a master’s degree in public health with a focus on sexual health and HIV. He also works as a health promotion specialist with a sexual health charity in the UK and supports young people and members of the LGBTQIA+ community in achieving positive sexual health outcomes. Ese also campaigns for people living with HIV, challenges stigma and discrimination around living with HIV and stigma and discrimination around the LGBTQIA+ community globally especially in Nigeria his country of origin.

 

 

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