Can you live a long, healthy life with HIV? – Patient.info

So, how common is it to live a normal, healthy life after testing positive for HIV? How do people with HIV manage their condition? And can an HIV diagnosis shift someone’s perspective on life?

How it feels to be diagnosed with HIV

“I always describe that moment like being hit by a truck,” says 35-year-old Nathaniel Hall.

“I was diagnosed in 2003 and, although effective HIV medication was around, it was still considered a chronic illness, so the diagnosis came with the heaviness of a life-limiting disease. I think I may actually have blacked out momentarily when I heard. I was only 16.”

Nathaniel had only recently come out, and was still working through his internalised homophobia.

“I felt like my sexuality had to be inherently wrong because it was being punished with this disease. There was a lot of shame that controlled my life for a long time afterwards,” he says.

Likewise, Bisi Alimi, 46, had his world changed forever when he was diagnosed with HIV in 2004.

“It was 17 years ago, but it feels like yesterday I went into that booth to take the test. At the time of my diagnosis, I was still dealing with losing my best friend, who died due to complications of AIDS. So, when I was told I was positive, I broke down. I looked at the future I had dreamed of all my life and felt I would never be able to achieve my dreams,” he shares.

The response of medical professionals after diagnosis

Bisi was fortunate with the response to his diagnosis, and was told that he could get help.

“I actually got diagnosed at an HIV conference, so the amount of inspiration around me gave me a very solid foundation to build upon the little hope I had.”

He also had friends who had been living for a long time with the virus, offering comfort, but it was still a hard thing to accept. And sadly, not every person is instantly reassured that a long life is possible with HIV.

Nathaniel was told that he had a prognosis of 37 years. The shadow of what HIV meant in the 1980s also loomed over him. A few months later, as HIV healthcare continued to develop rapidly, he was told that medication could keep him alive well into old age.

“I still felt a seriousness about starting medication, as I’d heard of people having adverse side effects. Nowadays, thankfully, people start medication right away and the side effects are less severe. All the staff at my clinic were kind and supportive, but HIV is often separated from other STIs as being more serious. It sometimes feels like people are over-protecting you,” he says.

Similarly, Musa Njoko, 49, wasn’t given hope for the future following her diagnosis in October 1994.

“I was completely perplexed and devastated. Due to my health at the time and what was available medically, or lack thereof, I was given three months to live if I was lucky. I had a 2-year-old son, who is now 28.”

Managing HIV on a daily basis

Nathaniel takes one tablet a day, which keeps his HIV at undetectable levels. We now know that people living with HIV on effective treatment cannot pass on the virus to partners (known as undetectable=untransmittable or U=U). Nathaniel says this has revolutionised the lives and relationships of people living with HIV.

“My current partner takes PrEP (pre-exposure prophylaxis treatment), which helps protect him from contracting HIV as well. The psychological impact of the diagnosis still needs day-to-day management, however, as I also have complex PTSD and generalised anxiety. I try to eat well and exercise regularly, and stress management is really important.”

Musa echoes the importance of self-care, as HIV has become integrated into her life.

“Apart from taking daily antiretroviral treatment, I’m just doing what is necessary for every other person to live a healthy lifestyle. HIV is part of my life. There’s no ‘HIV special plan’. It falls under health and wellness and general management alongside my other chronic conditions. There’s no exception for HIV so it doesn’t hold me back.”

How does an HIV diagnosis change your outlook on life?

Accepting his HIV status has been a long process for Bisi. He’s battled with depression, self-doubt and shame over the 17 years since his diagnosis.

He says, “I have also had to deal with guilt, the fact that I am the one who got to live when many of my wonderful friends had to die. This has also caused anger and frustration. Seeing the medicines now available, even the conversation around vaccines, makes me want to scream. Imagine if my friends had access to life-saving HIV medications in the early 2000s.”

It’s been a journey for Nathaniel too, who didn’t tell his family about his HIV for 15 years, a kind of secrecy he says isn’t uncommon.

“Stigma and discrimination haven’t gone away. I’ve faced rejection from partners and now I just worry all the time about who to tell. I’m a performer, so when I went public with my diagnosis in a solo show and on TV, it was my way of ridding myself of the toxic shame I’d carried all those years. My mission is to educate and empower people to become HIV allies, as there are many misconceptions out there. For example, people still think HIV is a ‘gay’ disease, yet over 50% of people living with HIV in the UK are heterosexual. Many people also don’t know about U=U or the options to protect themselves and their partners.”

Following his struggle, Nathaniel wants to raise awareness so fewer people feel the shame he did.

Likewise, Musa’s outlook on life has changed over the years.

She’s in her 28th year of knowing her positive status. Her early years were spent grappling with a web of issues, trying to make sense of it all. Now she’s reached a place of acceptance, having gradually moved towards embracing her diagnosis.

Have society’s attitudes also changed?

While Bisi’s personal outlook has changed greatly, he believes the rest of the world has a lot of catching up to do.

He lives a very happy and healthy life, but says there’s a long way to go with the conversation around HIV.

“We can’t talk about a world without HIV and AIDS unless we discuss homophobia across the world. In Africa for example, HIV prevalence among gay men is 20% on average. However, it seems people think that the best way to deal with this is to criminalise same sex relationships. Look at places like Nigeria, Ghana and Kenya, where there is a correlation between the criminalisation of LGBTQ+ people and an increase in HIV infections,” he explains.

“There can also sometimes be a self-righteous approach to sex and sex education, and we’re still having conversations about access to PreP.”

Some words of advice

Nathaniel says:

“HIV stigma and shame are everyone else’s problems, not yours. Don’t internalise their shame and negativity. You are still worthy of love and life. Seek support and meet other people living with HIV, because you’ll find comfort in sharing experiences. We need to show the rest of the world that people living with HIV are not a danger, but also that HIV has not gone away. This virus kills thousands globally each year, due lack of access to medication. The fight to end HIV needs your support and allyship.”

Bisi says:

“Believe me when I say that it gets better. If you are in doubt, look at me. I’ve been living with HIV for 17 years. I will be 47 in January. I’m at the top of my game and life has never been better. You can live a very affirming, positive life with HIV. You only get one life, so just try to enjoy it and everything will sort itself out.”

Musa says:

“As frightening as it may be getting that HIV diagnosis, you should never give up on your dreams. You can still do all the things you want to do. Your life is still significant and worth living. Your dreams are the colours that you bring to this world and without you pursuing them, something will always be missing. You are so precious.”

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