Last weekend I had the chance to meet up with a couple of people who were recently diagnosed, they were both passing through Manchester on their way home from a ‘Newly Diagnosed Weekend’ retreat and we thought it would be good to meet each other after speaking on Twitter and the myHIV Community Forums.
I think it was good for the both of them to unwind a little and we all got on really well: I think they’d both found the weekend really useful, but when focusing on the virus after not long living with it can be a challenge and I think it was quite intense for them. I myself went on a newly diagnosed course back in 2010, it was run by GHT in Manchester and spread out over five weeks, each week dealing with a different topic, they ranged from HIV ‘jargon’ to sex and employment.
‘Newly Diagnosed’ is not always defined in terms of months or years, it’s often a case of how well someone living with HIV feels they understand the virus or how well they believe they are coping with it. I would say that from at least two years I was certainly past this definition and comfortable with the way my life was, and how it would be in the future.
There are a couple of different organisations who also offer the same sort of retreat weekends for ‘Long Term Survivors’, and these are usually reserved for people who have been living with HIV for five years or more. And that’s got me thinking. Since the course I took part in during 2010 and until November 2014 I’m essentially in neither a ‘limbo land’ that doesn’t fit either ‘newly diagnosed’ nor ‘long term survivor’. What’s more whilst five years was consider a long time in the early years of the virus people diagnosed from the 00s onwards can expect to live as long as they would had if they had not acquired it.
During the past couple of years I’ve lived confidently with my diagnosis, it’s one reason why I was committed to being open about my status and why I had enough guts to tell everyone. But there are a lot of challenges I faced along the way and there wasn’t always necessarily any means to speak to other people going through the same situations.
It’s during the 1-5 year period that people living with HIV will probably think about telling more people, friends that didn’t already know, perhaps family. It is also a time when many people start to think about wanting to start a relationship if they’re single, or like myself start to realise that you can have a career even with HIV and want to try and progress in their place of work, take on a new job, or start work again if they’ve needed to take time out for a while.
It’s been 30 years since the discovery that AIDS was caused by a retrovirus and we’re approaching our 26th Worlds AIDS Day. We’re telling people how times have changed, how the virus isn’t as deadly as it used to be and how people living with HIV can live as normal life as they intended to had they never been infected. So, is it time we changed the way we support people living with HIV? Do we need to start thinking about groups and facilities for those living with the virus, at any stage and in any year and not just focusing on those at either end of the spectrum?