HIV continues to affect millions worldwide, but according to the latest research, awareness is on the decline in the UK. A study completed in June by the MAC Aids Fund found that a third of young people don’t know that they can acquire HIV through unprotected sex. And these findings are reflected in an influential House of Lords Select Committee report, which concluded that “awareness of HIV in Britain has fallen below the public radar”. There is clearly a need to talk about HIV.
Many people living with HIV feel that they can’t disclose their positive status for all sorts of reasons, from fear of discrimination to personal shame, but studies have shown that openness can bring psychological benefits, not to mention an increase in general HIV awareness. Bruno, a young professional from London, was diagnosed a couple of months ago and made the decision to tell friends and family about his status. He has agreed to share his story to help raise awareness and support other people living with HIV.
“About two months ago, I had an HIV-positive diagnosis, and since then I’ve read and heard the stories of people living with HIV and also newly infected cases, about how they suffer in silence, don’t tell their parents and friends, are scared of discrimination, embarrassment, being accused of being reckless and causing disappointment.
I went through the same feelings, but I seemed to have made different choices than most newly diagnosed people. I thought I would share this in the hope that it will make a difference and possibly inspire newly diagnosed people and those who have already been living with HIV for a few years now.
I’m a business owner in my early 30s living in London for 10 years. I’ve had a couple of long term relationships during this time and the last one came to an end about eight months ago. It was a tumultuous time as we were living together then. I had to move flats, I was really busy at work and I started going out more.
I had a few sexual encounters then but was always safe, save for one encounter with a person I was seeing more regularly. We both got tested for HIV a day or two after the unprotected encounter and both came out as negative, although he only informed me of his results via text.
A few weeks later I developed serious flu symptoms. I already had a cough since before Christmas but suddenly I was feeling dizzy and feverish with night sweats. I went to my doctor who suspected it was tuberculosis due to a scare we had at work a couple years ago.
I didn’t know much about HIV then as it was never a subject in my social circles. I did some tests for TB and they were all negative. I took some days off work and stayed in bed and slowly things got back to normal.
A month later or so, I learned through a friend that the guy I had unprotected sex with was sleeping around at the same time he was seeing me, which made me nervous. I thought about all the symptoms I had back in the day and counted six weeks from the day we had unprotected sex. I then went for an HIV test, which came back positive. That was exactly three months after I had a negative test.
The shock was like nothing I had ever experienced. I felt like I was in a bad dream that I couldn’t wake up from. For those first two weeks I was in hell. I didn’t know anyone who was also HIV-positive and that made me feel lonely and isolated. I called some good friends and shared the news and to my surprise one or two also revealed they had HIV for a few years now.
Those were two weeks of ups and downs. One moment I felt fine about everything, suddenly sadness would take over me and I would sob alone in my room. During that time I started reading everything I could about HIV.
Once I read about what the medication does these days, about how it can clean your blood and bodily fluids of HIV, making it undetectable and the carrier non-infectious, I made a decision. I would get on meds ASAP so as to avoid spreading it AND I would talk about this with everyone because I felt some sort of social responsibility.
More importantly, I wanted to raise awareness that this doesn’t only happen to ‘other people’. This can happen to anyone, to our best friends, to our brothers and sisters, to our children, or even single/divorced parents. It links the stats to real people.
I told my brother about it over FaceTime. He simply reacted by saying “Ah yeah, I thought that’s what you wanted to tell me because you said you had to speak privately, and I knew you had been ill in the past few months. Don’t worry mate, I had an HIV scare a couple years ago and I’ve read all about it. You’ll be fine.” I couldn’t have expected a better reaction.
I kept sharing the news with friends and the list of people with HIV started to grow. I was shocked. How could people simply not talk about it? It was like there was no need to, after all nobody seemed to have it! As I shared the news, the feeling of loneliness started to lift and a sense of purpose and responsibility started to become stronger. Some friends got even closer to me, which was really comforting.
At the the end of those two weeks I was feeling better about the whole thing, still experiencing low moments and the occasional crying episode, but I was considering telling my parents once I was back home that weekend for holidays.
I had my first doctor’s appointment then. My doctor was lovely and very knowledgeable, but I could see in her face that she was sceptical as to how well I was handling the situation, and even advised me against telling my parents while I didn’t have all the info on myself (I would only receive my first round of blood results once back from holidays).
I said they would probably feel upset if I told them a year or two later, because they might have wanted to be by my side at such a difficult time. She argued maybe they would understand because I was trying to get my head around it during that time.
Even my friends, both those living with HIV and the HIV negative ones, were advising me not to tell my parents, as they probably wouldn’t understand or would only worry without being able to do much for me. I could see their arguments, but in my head it was a matter of getting the support I needed and also educating people. I was on a mission. Still, I had a great fear of disappointing my parents.
I went back home two days later, one day after I started my meds, two weeks after my diagnosis. I then told my parents, against everyone’s advice. When I told my mum the first thing she said, which I will never forget, was “…and you’ve been dealing with this on your own? Why didn’t you call me? I could have taken a flight to be with you!” I just couldn’t believe how loving and understanding she was being.
My mum has always been a bit hysterical and a worrier, like most mums, but her own life experiences changed her and I hadn’t realised that until then. My fears of having disappointed my parents were shifting. I was feeling loved and supported. It wasn’t much different with my dad. He was clearly more upset than my mum, but he just asked lots and lots of questions as he had absolutely no knowledge of anything regarding HIV.
I explained how I wouldn’t get sick ever as long as I took my meds and that my life expectancy would be normal, specially since I had such an early diagnosis. He listened to everything very calmly and once everything seemed clear to him we went back to spending time together as if nothing had changed. I had the best time with them over those two weeks.
I came back to London and continued to tell my news. By then, my friends were saying I was made of strong stuff. I felt great, like I was ready to face prejudice from whichever direction it came from. I just didn’t care what people could think about me or HIV. If they didn’t know the facts then I would educate them, if they weren’t too ignorant to listen.
Still, I was feeling very sensitive, with my feelings just under my skin. I would get happily emotional with very little reason. Over the years I built this shell around myself for protection. I was never very emotional and in a way I was dead already. I didn’t enjoy my life as much, didn’t get too involved in social events, would find excuses not to do things. I was even neglecting my dog. I was living in apathy. My diagnosis somehow got me back in touch with myself and my feelings. I felt alive again!
I talked with all my HIV-positive friends and asked them about their story. Some have told all their friends, some have told only their closest friends. None have told their parents. The fact that remained with me is that people who have dealt with this on their own, or with little support, took much longer to get over the fact they are HIV-positive, to lift their own stigma and, more importantly, to start treatment. Treatment these days is the way to contain infection. The only way, since the battle with the condoms is a lost one.
It has been two months now since my HIV-positive diagnosis, and I can say with no doubts that, even though I went through hell in those initial two weeks, it has had a major impact in my life, and for the better.
I’ve become calmer, more self-assured. I’ve realised life is too short for us to suffer alone. It made me want to help people, be more social, discover new things about myself. Since then I have increased my circle of friends, have met some amazing new people, rediscovered my passion for music, have joined a volleyball club and am in love with my life again. Even my performance at work has improved.
I’m hoping that through this I can inspire people to stand up for themselves, talk more about HIV within their circles of friends, educate people, be they family members, friends or strangers, and start taking their meds.
I know people have different backgrounds and have different relationships with their families and friends. Still, we are all made of the same stuff. We can all overcome the same situations. And we don’t need to walk the path alone. To me, being HIV-positive comes with a responsibility: to protect, educate and support others.
And only together, if we disclose to each other, can we make a difference and be there for each other. If everybody keeps quiet about their status then “nobody has it”, there’s no problem. Or is there?