Life on HIV treatment – a personal perspective

I’ve been taking HIV treatment for ten years – that's longer than the average life expectancy of someone with HIV when I was diagnosed back in 1991. I’ve seen my CD4 cell count quadruple and my viral load fall from the high hundred thousands to below 50 and stay there. It would be easy to conclude that, for me, the treatments have been a success – not least because it’s over 17 years since I was diagnosed with HIV and 15 years since my first AIDS-defining illness. To put it simply, without anti-HIV drugs I expect I would be dead now. Instead, I'm alive and in excellent health.

That's not to deny that HIV still has an impact on my life, even if that means having to go to the clinic every twelve weeks or so for routine check-ups.

I'm pleased to say that HIV doesn't seem to have an impact on my physical health now. On the other hand though, living with a chronic physical illness for so long has had an emotional impact. I’ve had two major depressions since I started HIV treatment, each of them as debilitating in their own way as any physical illness HIV has caused me. Both my consultant and the specialist HIV psychiatrist he referred me to have assured me that I’m far from alone in experiencing mental health problems after starting treatment. For some, these are direct side-effects of their medication. For me, the causes have been less direct. Much as I'm now very optimistic about my future, I’ve had the odd bout of pessimism, and the renewed hope for the future which treatment has given me has been compromised by uncertainty about my future.

The HIV drugs I'm taking now don't cause any side-effects. This hasn't always been the case. One drug I took caused damage to the nerves in my feet. I'm writing this on a cold November morning and the numbness in my feet is very much a reminder of how long-lasting this damage is. Thankfully, this drug isn't used now, and none of the other drugs I've taken have caused anything other than mild and short-lived side-effects.

Every so often I do get anxious about my health. One drug I took was linked to an increased risk of heart attack, which was a big worry for me given that there's a lot of heart disease in my family. And every so often I read the latest news report about HIV being linked to an increased risk of cancers, and it sends a bit of a shiver down my spine. But these feelings are balanced by real optimism, and I felt genuinely excited when I read that doctors now think that most people with HIV have the chance of living into their 70s.

I used to worry that I wouldn't be able to tolerate HIV treatment in the long run, but this concern has largely faded. My health is getting better, not worse, and side-effects are increasingly less of a concern for me.

Many of the things that now keep me awake at night are concerns that anyone can have. A legacy of being ill with HIV in the past was that I didn't work for many years. I'm glad to say I've been in unbroken employment for eight years now, but my chequered employment history means that money is a nagging concern. Glad as I am that I have a good chance of living way beyond retirement age, I'm a bit worried about what I'm going to live on! I've started paying into a personal pension but I've a nasty suspicion it's too little, too late. But hey, lots of people who don't have HIV have the same worries.

With treatment has also come a redefinition in the way I perceive myself and, I think, the way others look at me. I’ve no doubt that I’ll live a longer and healthier life thanks to HIV treatment. This means I’m starting to expect things from life – not least enjoyment and fulfilment. I’m no longer prepared to accept the day-to-day drudge that accompanied my pre-treatment days with HIV. Nor, if another drug option exists, do I see why I should have to cope with side-effects. I’ve become bored with hiding my HIV status – for example, if someone asks me why I'm taking my pills, I'll tell them, with a smile, "for AIDS". It normally stops any further questioning. And I know that I’m lucky in that I haven't had a bad reaction from anyone I’ve told I was HIV-positive – yet.

But despite my best efforts, popular prejudice about HIV has penetrated deep into my consciousness. I do feel guilty that the medical services provided for my treatment are so good when my chronically ill parents have to wait months for appointments and even longer for treatment and care. And uncomfortable as it is to admit this, I do sometimes wonder that the reason why I never told them was a legacy of the internalised homophobia I struggled with for much of my adult life and a deep seated shame about becoming HIV-positive in the first place. This hasn’t been helped at all by the recent criminalisation of HIV transmission in the UK.

Thanks to the success of treatment, I no longer feel that people should make the allowances for me that they were prepared to make in the past. I’m very aware of how hard it’s been for my partner and friends at times. The problems I’m facing now are less serious, and are more generic – a lot of people have controllable chronic illnesses; a lot of people live with occasional mild health problems; a lot of people are financially insecure.

I want to make the most of the fact that HIV treatment means that I’m alive and planning for the future when, to put it very simply, I expected to be dead. But I also need to acknowledge that my life now still has its complications, stresses, strains, and pains. Like HIV itself, they’ve become part of my life, and, with varying degrees of success, I’ve had to find ways of coping with them.

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Featured topic

HIV treatment

Treatment is recommended for all people living with HIV. It involves taking a combination of antiretroviral drugs. This stops the virus from replicating and allows the immune system to strengthen and fight infections.
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Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.