About three months ago I received my HIV positive diagnosis.
Since then I’ve read and heard the story of people living with HIV – of how they suffer in silence, don’t tell their parents and friends, fear discrimination, embarrassment, and are being accused of being reckless.
I went through the same feelings, but I decided to make some different choices. I share this in the hopes that it will make a difference and possibly inspire newly diagnosed people and even those who have been living with HIV for a some time now.
I’m a business owner in my early thirties, and I’ve been living in London for 10 years now. I’ve had a couple of long term relationships during that time and the last one came to an end about eight months ago. It was a tumultuous time as we had been living together – I had to move flats, I was really busy at work and I had started going out more.
I had a few sexual encounters but these were 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 back 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, feverish and 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. We did some tests for TB and it was 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 result.
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 make you undetectable and thus essentially non-infectious, I made a decision. I would get on meds ASAP so I could avoid passing it on AND I would tell this to everyone because I felt some sort of social responsibility. More importantly it 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.
I told my brother about it over FaceTime who 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, and I was considering telling my parents once I was back home that weekend for holidays.
Then came my first HIV consultant appointment. My doctor was lovely and very knowledgeable, but I could see in her face that she was skeptical 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 who were 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 decided to tell 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 as long as I took my meds and that my life expectancy would be normal, especially 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 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 rarely emotional and in a way I felt like I was dead already. I hadn’t been enjoying my life as much, wasn’t get too involved in social events, and 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. It seems clear to me that people who have deal with this on their own or with little support take much longer to get over the fact they are HIV positive, to lift their own stigma and, when they are ready – 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’s been three months now since my HIV 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 on my life – for the better. I’ve become calmer, more self-assured. I realised life is too short for us to suffer alone. It made me want to help people, to be more social, and 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, I’ve 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 and talk more about HIV within their circles of friends – to educate people, be them family members, friends or even strangers. 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, we can make a difference and be there for each other. If everybody keeps quiet about their statuses then “nobody has it”, there’s no problem. Or is there?
I’ve wrote a few more posts. If you’re interested check them out at brunojongh.tumblr.com. Hope it helps most.
Bruno De Jongh (@BrunoJongh)