- Editorial comment – my 15 years with HIV
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Editorial – my 15 years with HIV
I’m opening this edition of HIV Weekly with a few personal comments. Today, May 30th 2006 is the 15th anniversary of my diagnosis with HIV.
I’ve been taking antiretroviral therapy for the last eight years. 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. To put it simply, without anti-HIV drugs I expect I would be dead now.
However, I am still very much aware of the seriousness of HIV, of the extent to which it impacts on my life and of the fact that it is likely to continue to do so for the foreseeable future.
First all, I still get ill because of HIV. In early 2005 I developed a high fever and cough. My temperature quickly returned to normal, but my cough stayed put. Six months later my temperature dramatically returned resulting in my hospitalisation whilst attending a conference in Spain. A chest X-ray revealed that I had pneumonia, and further tests on my return to the UK identified a multi-drug resistant pneumonia bug. Over a year later, despite having a CD4 cell count in the high hundreds, the bug is still present, and still makes me cough. My consultant is in no doubt that the reason I have it is because I’m HIV-positive.
What’s more, I’m still very medicalised. I go to the HIV clinic every twelve weeks for blood tests to monitor the success of my treatment and its impact on my metabolism. This means I see my consultant just as often as I did before I started taking anti-HIV drugs.
Living with HIV has also had an impact on my mental health – just as the lab results began to suggest that the damage it was doing to my immune system was being controlled, my mental health declined. 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. I’ve had periods of real pessimism, and the renewed hope for the future which treatment has given me has been compromised by side-effects and uncertainty.
Fortunately, I’ve been spared any of the disfiguring changes in body shape (lipodystrophy) which some anti-HIV treatments can cause. A friend, however, has not been so lucky, and has developed severe facial wasting which has required several courses of treatment to correct even temporarily. As he put it: “It’s the ultimate irony – you’re spared dying of AIDS only to look as if you are.”
I’ve had my fair share of side-effects as well, including the diarrhoea that accompanied my first year on nelfinavir, which felt like a tap being turned on in my bowels. Then there was the peripheral neuropathy in my feet and lower legs – the worst pain I’ve ever been in, which still isn’t completely resolved, five years after stopping the drug which caused it. At one point I had to see a cardiologist, after I developed an irregular heart beat. As I’ve no obvious risk factors for heart disease the increased blood fats which some anti-HIV drugs can cause looked like a possible cause. Thankfully it turned out to be nothing more worrying than the consequence of having a low resting heart rate, from all the running I do. But it required numerous visits to the hospital, and I still ask my doctor about my cholesterol levels with some concern.
When I’m feeling optimistic, I can well envisage anti-HIV treatment keeping me well and living to a ripe old age. But every time I have my viral load measured, I worry that it may have become detectable again. I’m only human, and despite my best efforts I occasionally miss taking a dose of my treatment or take it a few hours late.
I’m also uncertain about how long my body can tolerate infection with a chronic viral illness like HIV and the potent drugs needed to treat it. I’m more than aware of the excess rates of certain cancers seen in people with HIV, and, as I’ve had warts in my anus and rectum in the past, I’m particularly concerned by reports that even when anti-HIV drugs are working well, people with HIV who’ve had anal warts have an increased risk of anal cancer.
Coupled with the medical uncertainty is a lack of security, particularly as regards money. Although I’ve managed to stay in the same job for over four years now, HIV meant that I had a very chequered employment history for over a decade. I’m now fast approaching 40, and don’t own my own home (and doubt that I ever will). I’ve started paying into a personal pension plan, but worry that I’ve left it too late. I really do worry that chronic poverty could be awaiting me in old age – if HIV treatment keeps me alive that long.
But there’s a need for a bit of perspective. I’m not the only person I know who worries about money and security. It’s far too easy to blame HIV and treatment side-effects for just about every medical condition that raises its head. For example, I noticed a slight thinning in my cheeks recently, and my instincts were to attribute this to treatment-associated fat loss rather than to look at a less sinister explanation, like the fact getting older.
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 antiretroviral therapy. This means I’m starting to expect things from life – not least enjoyment and fulfillment. 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 of hiding my HIV status – if somebody asks me how I got a housing association flat with a garden in central London I now tell them, “because I have AIDS.” It normally stops any further questioning. Nor do I worry about looks or enquiries when I take my pills in public.
I’m lucky that I’ve never had a bad reaction from anyone I’ve told I was HIV-positive. But that may change – what will the implications be of the recent criminalisation of HIV transmission?
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 if the reason why I never told them I have HIV 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. And 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 pain; 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 I expected to be dead. But I also need to acknowledge that life with HIV medication brings its own set of problems. Like HIV itself, they’ve become part of my life over the past 15 years, and, with varying degrees of success, I’ve had to find ways of coping with them.