UnTouchableHIV
HIV is a virus that weakens the immune system. There is no cure, but with treatment most people live long, healthy lives. AIDS — now usually called late-stage or advanced HIV — is a group of serious illnesses caused by the virus, and most people on treatment in the UK never develop it. Two things are worth saying plainly, because stigma has outlived the facts. HIV treatment works: it aims to make the amount of virus in the blood undetectable, usually within six months, and **someone on effective treatment with an undetectable viral load cannot pass HIV on to anyone else**. And you cannot catch HIV from kissing, hugging, shaking hands, or from sharing a toilet seat, food, drink or ordinary household things. It is passed on through unprotected sex, by sharing needles or sex toys, and from mother to baby in pregnancy or birth. Some people get a flu-like illness two to six weeks after infection — sore throat, fever, swollen glands, aching muscles, a rash — and many have no symptoms for years, which is why testing matters. A test uses saliva or blood, and results come back within days at a clinic, or minutes with a home kit.
This is a plain summary, not medical advice, and it is not a substitute for talking to your GP or your clinical team. For NHS information about hiv, speak to your GP or call NHS 111.
People who have talked about it
2 stories, each one written in our own words from what the person said publicly themselves.
DJ Fat Tony
DJ Fat Tony's mother found him unconscious. He was diagnosed that day
Content note — this story covers a subject some people would rather choose when to read.
DJ Fat Tony had been in denial for a long time when his mother came to his house on a Tuesday and found him unconscious on the kitchen floor. She got him to hospital. He tested positive for HIV there and then, and they kept him in. He says he wanted to go home, and did not have the strength to go anywhere. He was in hospital about four months. By the time he was diagnosed the infection was very far along — he was told he had probably been living with it for around a decade, his viral load was enormous and his T-cell count had fallen below a hundred. He was put in isolation, in a room where staff came in wearing masks. He was also coming off drugs at the same time, which he thinks made the deterioration worse. The infection reached his brain. After repeated lumbar punctures he became ill enough that doctors put him into an induced coma to bring the swelling down. He was in it for months. He remembers coming round with his mother holding his hand and not understanding what had happened, and being told over time that he had pneumonia and had nearly died. What he says next is the part that matters most. It did not stop him. He came out of hospital and went straight back to his old life, thinking that since he had not died that time, he would die the next. He says he never dealt with any of it and carried on using because of the shame attached to it — and that he used the word HIV rather than AIDS because it sounded nicer. Asked how the shame gets smaller, his answer was simply: by talking about it, and making it open. He says he had not discussed it with anyone before he put it in his book. Nothing here is medical advice. HIV treatment today is very effective, and someone on treatment with an undetectable viral load cannot pass the virus on. Support for anything in this story is listed at the end of the page.
Beverley Knight · on someone they love
Beverley Knight on Tyrone, and the Christmas she drove him to hospital
Content note — this story covers a subject some people would rather choose when to read.
Beverley Knight met Tyrone in their late twenties, at an R&B night in a London club. He spotted her, wanted her to perform at an event he was booking, and asked for her number. They had lunch the next day and, as she tells it, were inseparable from then until he died. By the time they met he was already a long way into living with HIV, and had been in hospital several times. At Christmas 2002 he became very ill. She noticed his speech slurring and his vision going — he needed glasses, and he began to sound drunk, which she knew he was not. His body seemed to be shutting down. She left her parents over the Christmas period, got in her car and drove him to hospital in west London, where he was admitted. The consultant told them the prognosis was poor. He would not survive it. Treatment might extend his life by a couple of months; without it, he was looking at perhaps a couple of weeks. Tyrone said he did not want treatment. What she says about that is short and unguarded: she had to accept it, and it nearly killed her. She was there when he died — in the next room. He died in 2003. It happened at the same time as she was promoting an album that was being rejected by people she had expected to understand it. She describes facing that without the person she would have leaned on, and everything spiralling from there. Tyrone was not a public figure. He is named here only as she names him, and nothing has been added to what she said. Nothing here is medical advice. HIV treatment today is very effective: someone on treatment with an undetectable viral load cannot pass the virus on. If you want a test, the NHS can arrange one, and results take days at a clinic or minutes with a home kit.
Photographs, in order: Beverley Knight by Amy Martin Photography (CC BY-SA 4.0).