Why I think it's better to know

Nick, a man with HIV in Scotland, was diagnosed within a month of contacting the virus. Here he talks in his own words about how he found out he had HIV, why he wants people to understand what it is to have an undetectable viral load, and why it's so important for people to get tested.

This story is only one of many that has been shared with us and it does not represent the experiences of all people living with HIV. If you have a different story, we'd like to hear it - please do get in touch.

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"I’d been tested for HIV about a month before with a negative result. I’d always tested regularly, because I knew that it’s better to know. Then, out of nowhere, I got very, very ill. To the point where I couldn’t work or exercise or do anything because I was having such intense headaches. It was really quite scary to just become a non-functional person. I kept going back to the GP and eventually they screened me for everything.

"One Friday I got a few missed calls late in the afternoon from the GP. She stayed on after 5pm to see me when I came in - she said she had some bad news for me and explained that I was sero-converting, that my body was reacting to very recently having contracted HIV. It's unusual to have such a strong reaction, so many other people that have HIV would never have had reason to know because they’re not aware of any symptoms or anything.

"Because it was Friday afternoon I couldn’t be referred to the specialist services until Monday but I had a hell of a weekend, it was just worse than ever, headaches and shivers. On the Monday, they admitted me into hospital and the most amazing consultants and juniors and nurses and orderlies just took care of me for a week. They were able to explain to me that I'd been diagnosed really early, and put me on meds immediately, taking down my viral load very quickly.

'I wanted to feel well, to get back to work.'

"I wanted to be active, I wanted to be healthy and I wanted to be undetectable. And within less than a week I was in a position to be discharged and then build towards going back to work.

"It’s been really interesting to just build up my health, to get that undetectable status [when the amount of HIV in a person's blood is so low it's not detectable and highly unlikely to be transmitted to others] super quick and to be able to maintain it. The first time you get a cold or something though, you’re thinking ‘Oh my god, it’s all gone wrong’. But then you realise that being undetectable means you are no more likely to get ill than anyone else. And equally you’re no less likely. So now if I get a cold or whatever I don’t worry about it because I know it’s just part and parcel of life whether you’re positive or negative.

'I've been very lucky to get such good treatment'

"Although I’ve been someone that’s had issues and depression and been to psychologists in the past, I don’t beat myself up about my status. I think of myself as undetectable, I feel it’s a goal to stay undetectable to protect myself, to protect others. I feel very lucky that the NHS has been given such good treatment, good meds.

"But my experience confirms that decision I made when I was very young - that it’s better to know, it’s better to get tested - is right. I think the support and treatment, mentally and physically, has been better than I could have imagined.

"I'm doing well and I don't think about my status much. I’m on Truvada, Darunavir and Ritonavir, three pills once a day. Which is really no effort. I’ve had no side effects and that has just been remarkable. I take them at a point in the morning when I know I will be alone, every day, before I leave the house. When you’ve got guests or relatives staying and you’re trying not to let them know, it can be difficult. You fear people hearing the rattling of the pills. So I use little bank bags for collecting coins, you can actually put daily ones in there and they don’t really make any noise.

'I know some people would say 'I told you so'

"I’m quite restrained in terms of who I’ve told and I haven’t told the family, though I'm naturally an open person. When I came out as gay, there were relatives that said your ‘choice’ will mean you will get AIDS. Now I have HIV, I know there would be people who would say ‘I told you so, all the gays have it’ and I don’t want to give them that pleasure. It’s sad that some people are hopelessly clueless, but that’s where we are. There’s a higher degree of stigma to this than almost anything I can think of.

"The public and the media aren’t aware that by being on treatment and having an undetectable viral load, people with HIV have a functional cure at the moment. I think there’s a risk that even with younger more liberal people, in their head somewhere is the incorrect ideas that you can catch HIV from toilet seats, handshakes, breathing on you, sneezes and things - right back to the 80s stigma and the tabloid nonsense. When in fact, with undetectable status even if I kitchen knifed my hand by accident and bled all over you, you would be fine.

'It'd be a date three thing'

"A big worry is of course partners. I resolved that actually if I do enter into a relationship and somebody has a problem with it, then they’re actually not the right person for me because they’re not willing to engage with science and they’re not valuing me enough to actually care.

"I’ve said to myself it would be a date three thing, you know. You would not throw it at them to begin with but you would try and get it in there quite early. What I did with my friends was I immediately launched into the explanation of undetectable status. They could understand it, they could go away and google it and they became that wee bit more enlightened and were absolutely fine.

'Fear is preventing people from getting tested'

"Many people seem to feel like getting HIV would be the worst thing that you could possibly imagine. That fear is preventing a lot of people from getting tested. They’re exposing themselves and others to harm as a result, and by not testing they're missing out on the opportunity I had to get diagnosed early and get on top of it from the very outset.

"I suppose the reason I was keen to share my story was I want people to know that that having HIV isn't always about life stories full of disaster and woe. For me, I’m not letting this get me down, I’m glad I got tested. I just wish everybody would because it’s so discreet, so confidential, so professional. Anyone that’s sexually active should be getting tested. "

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HIV Scotland is collecting the experiences and stories - like this one - of people living with, affected by or potentially at risk of HIV from across Scotland, to inform our work and to raise awareness about the reality of life with HIV.

We take confidentiality seriously and do not share any information without express permission from the individuals we talk to.

If you would like to share your story, or if you have questions about living with HIV, please do contact us.