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HIV: living positive-ly

The year is almost over at last! December 1 was World Aids Day, and we shared a few tips and pointers on dealing with PEP and PrEP. In this article, we talk to someone who is living positively with their HIV positive status.

Some people are born HIV+, and it’s all they’ve ever known. In 2019, approximately 38 million people across the globe were living with HIV/AIDS: 36.2 million adults and 1.8 million children. We speak to Shee*, one of the millions of people who were born and continue to live positive-ly.

Born this way

I was just like any other kid my age – fairly active, and sick sometimes. But the older I got, the worse the ‘flare-ups’ got. I went from a kid who was in the hospital for recurring ear infections to a kid on antiretrovirals. Obviously, I had no idea what the implication of this was at the time, but I could tell from the new rules that life had changed somehow. I had to take my pills even if they made me feel ill sometimes, and I couldn’t be around my friends in close quarters anymore in case they got me sick; it was outside or no playtime.

Some stuff happened at home that I remember having mixed feelings about. Overnight, I wasn’t allowed to share things with my siblings anymore – not food, not utensils, and no more communal baths. I just figured it was a part of growing up and tried not to feel excluded or different.

Otherwise, it was a pretty standard childhood regardless of my status but then again ignorance is bliss. Living positive-ly is a high-maintenance lifestyle but I suppose I was lucky to have started doing what I need to early on. Eating healthykeeping to my treatment regime, and avoiding things that would compromise my health come easier when it’s all you know. But the emotional and psychological toll is another story all together…

The older I got, the more I began to contemplate my mortality and what my status meant for my future. I became gun shy about making long-term plans and found it hard to date because I hadn’t matured enough to comfortably have ‘the talk’. I’ll be honest and say my reluctance to tell my partners about my status led to some risky behavior that I regret, but no one was there to tell me how to navigate this. Although it took me time to figure it out for myself, I eventually hit my stride and I’ve had several open and healthy sexual and romantic relationships with HIV- partners. That’s the other thing about doing everything you need to do – you become virally undetectable and less of a ‘threat’ to your partners.

Related: Types of HIV stigma you may experience

But all that’s not to say that it’s been easy… if you’ve had to navigate these types of conversations, you know the real test comes when people see you sick. It’s one thing for someone to accept your positive status and another for them to be confronted by it. One time I tried some herbal medication because I was in a holistic phase and the interaction it had with my treatment medication caused my viral load to spike alarmingly.

It was a scary time, and it did pass, but the symptoms I experienced before it did leave me shaken, and unfortunately, broken-hearted. In retrospect, I realize that the same maturity I need in myself is the same maturity I need in my partners. It won’t work otherwise.

I digress though. I was explaining how for me the virus is more of an emotional and mental shadow. I can never shake the niggling feeling that I’m fighting against the clock. I know that people live full and long lives with a positive status but like I said earlier, the theory is always easier than reality. So, after years of debilitating anxiety, I decided to actually do all the things they tell you to: seek counseling, and find community.

My life blossomed! Not the second I walked into the counselor’s office, or the support group my now good friend used to hold in his home, but in what felt like no time at all. You can’t imagine what it feels like to feel, touch, and talk to people who have been positive for periods you never thought possible. To watch them live thriving and meaningful lives and know it’s possible for you, too! Everything I’d ever wanted to ask, every situation I did not have a guide for, all of it walked into my life with just one brave decision. I’ve since grown my support system and I attend more than one group’s gatherings. I’ve also changed my counselor a few times. I have only gained more from these changes and even though I remain realistic about my status I have found the grace to live a fuller life.  

Shee, 32

Have you ever dated a person living with HIV? When did they tell you they were living with HIV?

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