Living with HIV #2

In the city I live, it is estimated that there are about 8000 HIV+ people. Every time I searched for poz people through Grindr I found none in the closest 20-30 km.

Although I would never ask anyone to share their HIV status on a dating profile, I started wondering how are we treating people living with HIV. How do we make it hard for them to be open about their status? It didn’t take time for me to find out.

On a handful of occasions, while I was chatting to someone, they would ask “Do you have HIV? Why your profile says you are looking for stories for HIV about your blog?”. Before I even managed to write a reply, I was getting blocked.

After this, my mindset has changed. I now have removed my status on Grindr about my HIV status. I don’t think anyone should care what it is apart from me. I think people should only care to get effectively protected or treated.

On a good note, many people did reach out to tell me how much we need to talk about HIV. So, if you have a story, share it with me.

This post is dedicated to all the heartbreaking stories no lips ever told. The stories no-one will ever share, the ones we will not read about or ever hear.

The next story came to me anonymously through a form. Do you have a story to share? Do it today.

“I remember prior to being diagnosed I lived a very uneducated existence with sexual health. I had only ever been in one relationship for ten years and I had been sexually active with only one person. So, I guess I didn’t need to know about sexual health. Why would I?

That relationship ended and I took a break of 7 months. No dating at all and I wasn’t involved in the hookup culture. I met someone on a dating app, we hit it off and started having sex. We had a passing conversation on sexual health. I believed the information I received and proceeded into a relation.

It was great. The only thing I ever knew was how to be in a relationship. I was content being part of it, I valued the honesty and this suited me well.

Mind you, my ignorance around sexual health and general wellbeing was still on par with my 8-year-old existence and ignorance towards the possibility of Santa is real and does fly around the world over one night. I was told this to be true, why wouldn’t I believe, obviously it must be true. See, blissful ignorance.

Anyway, five months in, the relationship ended. Approx one month before that, we were walking around the Christmas markets at Stephens green and I felt a piercing headache, weak and nauseous BUT at the time I thought this was more to do with the smell of mulled wine.

I’d walk by a stall that was built like one of those sheds my grandad had. Some kind of cheap wood, freshly cut wood smell… All the Christmas market stalls were the same, this one was selling mulled wine. I walked by and got a full-on smack in the face of plumb of broiling mulled wine. It was in then superseded by the piercing headache. Being on a date night I didn’t want to ruin it.

The following month I thought the demise of the relationship was happening because my health was deteriorating. I couldn’t eat, I had a flu that wouldn’t dissipate, I was fatigued ALL the time, I couldn’t do anything.

I’d go to work and would have to leave (I mean, that was a positive!) halfway through. Sometimes I would have to just power through the pain. This continued for six to eight weeks. I had lost 15 kgs, I was exhausted physically and mentally reaching my tipping point.

I finally went to the GP – Oh my god he was so hot! He had this lovely set of dimples, he wore this lovely baby blue shirt, dark hair. Lovely soothing tone and I had started imagining us both walking down the aisle merely skipping to the beat of some vomit-inducing, otherwise lovely, tune. The GP asked questions and there I was again visualising my safe space. A relationship, even if it was only imaginary, at that time, at the moment, after weeks of illness, it was a welcomed reprieve and safe space.

I was prescribed antibiotics and off I went. 6 days later, I felt the same, I had started waking up and my bed was just wet. Like someone came in, with a bucket of water, poured it over me, saturated wet. Through my clothes, bedsheets, like it was lashing raining in the bedroom at nighttime. I decided to go back to Dr. Sexy Dimples with an equal mix of wanting to be fixed and wanting to get back to my safe mental space. But he was gone and I was devastated, dreams and future dashed! Damn it. I guessed he moved onto save kids in Africa. I figured it was the type of thing he’d do. Move to Africa and rescue the continent from oppression and starvation!

Next doctor, same questions, less imagery of marriage. She was nice though. Middle Eastern lady. I’d imagine she makes fresh bread at home, that kind. Anyway, she upped my antibiotics to penicillin and off I went walking slowly to the chemist to collect. Oh god, this better work. My symptoms got worse. I called through to VHI helpline. I was told I had a bad flu and I needed to drink fluids, relax at home and let me body fight it out. Arrrrgh!!

Finished the course seven days later and nothing was working. Nothing was fixed, I was still losing weight, was still waking up post-night monsoon and now had really bad headache and a rash on my abdomen and chest. Just, great. I went back to Dr Bread and she was gone so I went through the same questions with Doctor Three.

He was a lovely, older gentleman, I bet he had cats. Definitely had at least three cats, one had to be ginger and he fed them salmon from a can! He tried to give me antibiotics and I refused. I refused to accept that this was just a flu and refused to accept antibiotics or penicillin would work. I demanded blood tests, he responded with ‘that will cost and I don’t think you need it. Ok thanks, Dr. CatMan, blood, please!

He took the blood and I returned three days later. I came in and sat down and he said ‘our computers are down so I can read the results properly but let me write it down’ He took out a post-it, A POST-IT! Scribbled some results and said my white blood cells were going mental and your blood is been weird; they weren’t the exact words but it’s what he was ultimately saying.

“You most likely are looking at leukaemia.” Oh great! Now I’m gonna lose my hair, have a rash, loose weight, rain in my bedroom at nighttime and tired all the time. Great! He gave me a referral and I got a cab to the Mater Hospital. I couldn’t walk the kilometre.

While waiting there was a woman going around doing saliva swabs for free HIV test, she asked if I wanted to have a test. I declined. I’d only had sex with two people and both relationships. No need. She insisted and I was too weak to debate and push back. I opened up and she swabbed, swab away, swab away.

I went into triage and they decided to take blood, I also had a chest X-ray and a bit more waiting. I was waiting when the HIV lady came back and brought a man. Never seen him before, he had lovely glasses though. Black rimmed, thick, he pulled it off and it looked great. I was so jealous! They brought me into a room and told me the saliva swab returned a weak positive. I sat and nodded and just said ‘Oh right’. Then pause.

They repeated, “It’s a weak positive meaning it’s detected HIV in your system”. I asked if it was 100% sure and they said no. That’s all I needed. “OK, well, I’m here for the leukaemia, but thanks anyway”. As if I even had an option. They repeated and I kind of got it BUT it wasn’t confirmed.

They required more blood to test and I gave them my arm and they stabbed me again, took more blood and I went home.

I remember I got into the shower, I stood there, the shower was so hot, was amazing, water was running down my head and my chest and I looked down on my right arm. It had multiple puncture wounds, bruised. Fuck, FUCK, I have HIV. How could I have HIV? This was the first time I ever thought of suicide as a valid option.

Fuck, FUCK, I have HIV. How could I have HIV?

How is living with HIV? I actually forget at times, I forget I have to take medication. I forget I’ve taken medication. I forget it’s my new reality and that’s fine with me. The only time I’m reminded is when I have to ‘come out’ to people.

My biggest challenge is disclosure. Riddled with fear on disclosure. The good thing is it nets out people who don’t accept. They are not the type of people I would have around for any longevity or dept. It ensures my surroundings are people of dept, empathy and understanding.

Listen to someone’s story. Accept someone’s difference. Appreciate someone’s baggage and accept science regarding Undetectable=untransmittable

– Jay

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