Magazine Upfront How bad is HIV really? By Matthew Hosdon | @Matthew_Hodson I’m HIV-positive. Does that mean I wake up every day in misery, suffer throughout the day before collapsing in bed at night? No. Does it mean I just pop a pill every night and never give it another thought? Well, no, not that either. If you’re positive and open about your status you’ll get a lot of people expecting you to conform to one of the two options above. You’ll encounter people who remain oblivious to the quite extraordinary medical advances that have occurred since the early days of the disease – and you’ll encounter others who think that HIV is equivalent to diabetes (maybe it is, but I don’t hear anyone saying about diabetes, 'Oh, it’s just like HIV'). Of course the experience of living with HIV is going to be different for different people, depending on what stage you’re at when you get diagnosed, how you feel about yourself, whether you have a good support network and a range of other factors. For me, and for some others, being told that I had an incurable infection which, without medication, could kill me was a wake-up call. Being forced to contemplate your own mortality can really make you think about what it is you’re doing with your life, what you want to achieve and how you’re going to make the best use of your time. Of course the magic trick would be to have the same insight without the trauma of that diagnosis. Is that possible? In theory, I believe that it is. But it’s not an option for me, or for anyone else who already carries the virus – I did mention that incurable thing before, didn’t I? Although medically I’ve been pretty lucky so far (grasps wood with both hands) I know plenty of people who have not fared so well. One friend, who was diagnosed late, has been on a succession of aggressive treatments, has had to retire for medical reasons and has a poor prognosis. Another friend, who’s much younger than me, recently collapsed as a result of a negative reaction to his medication and might have died if he had not been found. I have numerous friends who suffer from peripheral neuropathy or have had dramatic body changes as a result of their treatment. And yes, most of these issues are treatment related, but without the treatment we’d be no better off than those who contracted HIV in the 80s and 90s and who died as a result. Although I may have benefitted from a ‘work out what you want to do – and do it’ attitude, I see other friends who have not gained anything from their infection. The trauma of an HIV diagnosis (and make no mistake, for most it’s still a major trauma) can send people spiralling downwards, numbing their pain with drugs and alcohol – and not doing their physical or mental health any good in the process. For all the people that find new reserves of strength, there will be others who will be floored by their diagnosis and may struggle to get back up again. Social attitudes towards people living with HIV, perhaps especially within the gay community, have not progressed as rapidly or as positively as the medical treatment has. Sexual rejection is common place. Some people will judge you if you disclose to them, or even more so if you do not. The language that some use about people living with HIV is horrifying: people are blamed for contracting HIV, in a way that you wouldn’t dream of applying to smokers who get cancer, or are vilified as predatory and irresponsible. Living with HIV is not as bad as it once was; we should all welcome the fact that it’s no longer a death sentence. But ignorance, prejudice and fear all combine to make it so much worse than it need be. Matthew Hodson is the Executive Director of NAM.