JD and Max tell their stories

This article originally appeared in HIV Treatment Update, a newsletter published by NAM between 1992 and 2013.
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JD Bailey* (female and 20) reflects on growing up HIV-positive…

The geographical transition from paediatrics to adult care was minimal. In fact leaving the sixth floor of St Mary’s to go to their ground floor 900 Clinic was much easier. The emotional transition was somewhat different.

My paediatric doctor had always known about my love of Ribena; every time my blood was taken, he would comment on how much Ribena I must have drunk that morning.

Going to appointments, believe it or not, was fun! The waiting room was exciting, there were rocking chairs and paintings of clowns on the wall with blue and green noses; everything I would have wanted if I had been given a playroom. Everything was fun, even being weighed and measured. All I cared about was whether I’d grown that month or not.

When I was moved to the adolescent/adult clinic I was overwhelmed by how much information I had access to. Previously my mum and I would enter the doctor’s room together, we would discuss how I was feeling/doing and then I would have to leave, as my mum and doctor discussed something about me that I was too scared to enquire about on the train journey home.

Glossary

disclosure

In HIV, refers to the act of telling another person that you have HIV. Many people find this term stigmatising as it suggests information which is normally kept secret. The terms ‘telling’ or ‘sharing’ are more neutral.

stigma

Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

paediatric

Of or relating to children.

naïve

In HIV, an individual who is ‘treatment naïve’ has never taken anti-HIV treatment before.

safer sex

Sex in which the risk of HIV transmission is reduced or is minimal. Describing this as ‘safer’ rather than ‘safe’ sex reflects the fact that some safer sex practices do not completely eliminate transmission risks. In the past, ‘safer sex’ primarily referred to the use of condoms during penetrative sex, as well as being sexual in non-penetrative ways. Modern definitions should also include the use of PrEP and the HIV-positive partner having an undetectable viral load. However, some people do continue to use the term as a synonym for condom use.

I guess I took comfort in the saying, ‘no news is good news’ or, ‘what you don’t know can’t hurt you’. Later at the 900 clinic I found out that they were discussing my viral load, my CD4 count and when might be the right time for me to start taking medicine.

What I remember was that ‘we’ liked the CD4s because they were my very own personal soldiers, fighting for my body. The viral load, on the other hand, was the thing ‘we’ were trying to put to sleep: ‘we’ couldn’t get rid of them, but it would almost be like they weren’t there. It’s funny, I liked the use of the word ‘we’ and still do, I felt that I wasn’t alone.

The first year I moved to the adolescent clinic my new doctor encouraged me to bring my mum with me, but I wasn’t the one to sit outside, she was! The doctor asked her to leave so that I didn’t have to. Eventually my mum stopped coming into the room with me altogether until she just didn’t come anymore. I don’t remember when it was; I think there was one appointment that she just couldn’t make. It was clear that I’d handled that one on my own, so she just stopped coming. She recognised that I was growing up and any medical information about me should be told to her by me.

Thinking about it, the transition from paediatrics to adolescents came with lots of information about sex. I went to a Catholic secondary school; I don’t know if they are all like it, but mine only discussed the bare minimum when it came to sex.

When they asked me if I was sexually active I was shocked! It had nothing to do with my status, I guess I was just innocent, or naive. Every appointment my doctor and nurse asked if I had a boyfriend and reassured me that if I was to have one, I didn’t have to disclose, just to make sure I practised safe sex.

In the first year of changing doctors, I worried a lot about the hardship that might come from disclosure. Would letting people know about my status shut me off from my potential future?

I began daring to think that perhaps my boyfriend wouldn’t see me as the ‘victim’ invaded by things that ‘we’ wanted to keep asleep. I found solace in the idea that other people usually had something to hide, an extra load, somewhere in their lives - that helped me too. It was comforting knowing that I wasn't always going to be the only 'risk'. Yes, I needed to protect any partner I may have in the future, but I also needed to protect myself.

I’ve been attending the 900 Clinic for four years now. At first the change was uncomfortable but soon it became empowering. It took time to readjust and get used to going to appointments on my own but that’s all part of growing from a child to an adult. I’m not there yet, but it’s a start!

…and Max* (male and 19) discusses the rewards and perils of disclosure

HIV, HIV, HIV! It seems that ever since I was disclosed to by my father in a hospital waiting room, my life has been all about HIV. Like shackles on my ankles, it has kept me both prisoner and given me the desire for freedom, both educated me in the potential of life and showed me my limitations. Being positive has given me an array of experiences both good and bad. At twelve you could have never told me that, out of the darkness that HIV casts upon your life there would be light piercing its dark spectrum.

When my father first told me of my status my first thought was death and how tragically short my life will be. Instinctively I cried assuming the worst, because like many in society I had bought into the tombstone propaganda pushed by the media. That was it, I had nothing left to live for.

It was hard enough dealing with the fact that my life seemed all but over, it became even tougher when I realised that I could not turn to my friends for support. HIV didn’t carry the same sympathies as cancer, a disease people contract “through no fault of their own”.

It was shrouded in prejudice, stigma and common misconceptions, the biggest being that you got it because you deserved it for being morally questionable or you had committed a wrongdoing of some kind. Life offered little comfort in its embrace, as it took my father away from me four months after he had disclosed to me leaving my sister, brother and I. As my father was positive too, this reinforced my fears that death was imminent.

Unlike people back in Africa, where I was born, I had the fortune of being able to attend a group for young people infected or affected by HIV at Body & Soul. It fast became my sanctuary, a home away from home where I could strip back the protective layers that kept secret my true self. I was me wholeheartedly when I walked through those doors. I had left the bigots behind and found friends.

Being around so many people who had endured so much in life but kept a resilient and dignified strength, beauty and compassion about them, gave me the courage to challenge myself and face my demons. It led me to disclose for the first time in my life.

I was 16 years old and my girlfriend at the time was a leggy light-skinned girl, with ‘come get me’ eyes that all the guys wanted, but she picked me (he laughs at the competition). It was the weekend and we had decided to have sex for the first time. I had been putting it off for a year and a half, something slightly unnatural for a guy my age with raging hormones. She thought I was just being a gentleman, but I was just afraid because she meant a lot to me and I didn’t want to lose her.

Despite my efforts the day had finally come. We were in my bedroom and I just started talking about hypothetical scenarios like, “what would she do if she found out I was HIV-positive?” I was trying to gauge what kind of response I was likely to receive. Her reply was that she would shoot me dead, because I had not told her and put her at risk. Not the most encouraging start, but nonetheless I dropped the bomb, I could not dodge time forever.

She became quiet, then asked if this was a joke, I calmly replied no. Silence took over again. Then she shuddered, tears began streaming down her cheek. It felt like I was on Family Fortunes: “What's the most common question asked when people disclose their HIV status...Our survey says: ‘Are you going to die?’”

I thought that this may be a red herring thrown out there to lull me into a false sense of security, while unwittingly I was bombarded with punches from all sides. I said no, and to my surprise she hugged me. I asked her, don’t you want to gouge my eyes out or give me a facial tattoo with your fingernails? She just said she was disappointed that I had not told her sooner, but she loved me and didn't want to go anywhere.

The positive experience of my first disclosure gave me the self belief that has led me to disclose to all my sexual partners. Some reactions have not been so smooth, but I have found with a little charisma and education on the facts, you can turn the biggest skeptic into a believer. It may not happen always but it can happen.

Now I am open about my status to all my partners and to my friends basically those who need to know, but I will not let it define my character. That is why I maintain my anonymity in this article. Not because of fear but because the content of my character makes me more than HIV. I am more than my illness, I thank those that have touched my life and given me this power and self belief, notably my father and those at Body & Soul. The strength felt emotionally has also manifested itself physically, I have been undetectable for six years.

HIV has been both the biggest bane and blessing on my existence, it has introduced me to people with both the purest and darkest of hearts, limited my ambition and spurred it further. Now I’m studying at university, and don’t feel the pressures of the rat race of life, I don’t know what I want to do in the future, just that I want to enjoy it and enjoy the ride. No matter the illness whether it be cancer or HIV, or the hurdle obstructing my progress. I firmly believe, life is for the living.

 

*Names have been changed.