Steve's story

'It wasn't until January 1987 that I had an HIV test and, as I expected, it came back positive. By 1998 I’d been through pretty much every drug that was available and had lived way past my 'dead by' date (in the 80s it was reckoned that if you tested positive, you had a maximum of five years left).

'Even though Ritonavir made me feel ill all the time, I stuck with it because it was doing some good, despite the fact that I knew I was risking diabetes and high blood pressure. Research was showing that all protease inhibitors, while effective against HIV, had the side effect of causing metabolic changes, especially hyperlipidaemia and hyperglycaemia. So why take them? For many of us, it was a question of: ‘Take the risk or die.’ Putting it bluntly: diabetes, heart disease, high blood pressure, lipodystrophy and the rest were better than your own funeral.

'I believe it was in 2004 that I developed Type 2 diabetes. I was very stressed, putting my bad temper down to the stress of looking after a very sick partner and paid little attention to the amount of fizzy drinks I was getting through, the frequent peeing, my ability to eat a pack and a half of biscuits with one cup of tea or my buying packs of giant Parma Violets by the dozen.

'In October 2007 I attended the clinic as usual and a few hours after getting home received a phone call: ‘Steve, get to your GP as soon as possible: you’ve got diabetes.’

'The more I talk to other people with HIV, the more people I find with both conditions, and our conclusions are that had we not taken those early anti-HIV drugs, we very probably wouldn’t have diabetes. However, we’d also probably be dead or dying.

'The link isn’t readily recognised, in fact it’s almost like HIV’s dirty little secret, partly I believe because those early drugs also cause a condition known as lipodystrophy, which means that you lose fat from your arms, legs and face, only to have it deposit around your internal organs. I look as though I have one hell of a beer belly, but you can't 'pinch an inch'. The fat is behind the muscle wall but, to someone who doesn’t know, the assumption is easy: I got diabetes because I got fat.

'I’ve never seen a diabetologist, ‘just’ the diabetes nurse at my local health centre, who is a gem. Unfortunately there seems to be very little communication between the HIV and diabetes clinics. I personally would be in favour of total information exchange between the two and my GP, but it doesn’t seem to happen because it would be ‘breaking confidentiality’. Please, let’s have some joined-up medicine being practiced!

'I feel on top of my diabetes, my main health problems are side-effects of anti-HIV drugs, though naturally I’m aware of the possibility of opportunistic infections.

'Given the information on HIV at the Diabetes UK website, I’d recommend anyone with HIV and/or diabetes and HIV to join the myHIV Community forums. HIV groups are far more tuned into diabetes than the other way around. Both conditions need some serious thought and a lot of effort, but it is possible to live with them both – something I intend doing for quite some years yet!'