Friday, October 21st, 2016 in Dear Jim
I was recently diagnosed with HIV, started my meds straight away and thought I was doing OK. But I’m not sure how well I’m really dealing with it or how I’m supposed to feel.
Can you advise?
These days because modern HIV meds are so good, more people living with HIV than ever before are living healthily and able to continue life much the same as before we were diagnosed. As long as we pop those pills every day and take reasonable care of our bodies, there’s no reason why we can’t live a completely normal lifespan. This is great news of course, and for some of us this is where the story ends. We just get on with life, put it behind us and don’t worry about it. After all, it’s just a virus and the meds are taking good care of that. End of.
But like many things in life, it’s not always that simple. We might struggle to accept what’s happened, feel full of confusion about the impact it’s going to have on our lives and are worried about the future. After the numbing shock of it so many questions come flooding into our minds. Who am I going to tell? How will it affect my relationships? What about my family? All this can feel overwhelming. When I was diagnosed two and half years ago the first thing I did was go out and start drinking in a soho bar (which trust me is not a good idea after a large shot of Penicillin). By the time my mate finally turned up, I was a shivering mess in the corner.
The thing is, there is no set way we are meant to feel after a diagnosis. Everyone’s circumstances, reactions and ways of dealing with it are different. In my work at Positively UK, some people have come to me saying that they feel OK but that somehow they feel they shouldn’t and instead are waiting for some kind of ‘crash’. Perhaps this reflects the negativity and very real past horrors around HIV and AIDS that still sit in our collective conscience, and which then bump up against the new brighter realities of Anti Retroviral Therapy and undetectable viral loads. I guess we still can’t help asking ourselves the question: ‘is this really not going to kill me?’
But then some of us really do go through some sort of crash, especially if our lives weren’t going that swimmingly before the diagnosis and indeed might have contributed to why we got infected. Feelings of low self-esteem, guilt or shame – which we may have been feeling for years anyway around our sexuality – can be made worse by the HIV. But this is also where it can be something of a wake-up call, a realization that we need to deal with stuff and make changes in our lives. So a new diagnosis can give us a positive opportunity to face up to things we might have been avoiding. In my case, my working life had lost direction and I decided to get some life coaching. It really helped to bring some focus back into my life which I’m not sure I would have done without the diagnosis.
So what would I advise? Here are the 5 most important things I tell people who are recently diagnosed:
You will more than likely have been diagnosed in a sexual health or GUM clinic and will continue to get your care there, but in the NHS you can go to any clinic you like and where you think you’ll get the best service. If you’re not happy at the way you’re being treated, you can just go somewhere else. And as you’ll be having your bloods taken every few months as well as collecting your pills, you’ll want the experience to be as easy and painless as possible.
Many of us didn’t know much about HIV before we were diagnosed and we certainly didn’t get taught about it at school. Getting ourselves educated about HIV gives us the confidence to be able to ask our healthcare providers the right questions and helps to re-assure our loved ones that we’re going to be OK. Be wary of Google searches – there’s a lot of misinformation out there. Your clinic or an HIV charity can point you in the right direction.
Once we’ve had the news, we immediately start thinking about who we are going to tell, how we’re going to tell them, or how on earth we’re going to keep it secret. Of course we will more than likely want to tell someone. But remember there is no legal obligation to tell anyone (except in very limited circumstances) and once you’ve told them, you can’t undo it. Better to do it gradually, and get yourself ready and informed so that you you’ll be OK when the barrage of questions come your way.
It’s good if you can tell at least someone you trust, because you’ll feel the relief of sharing the burden and getting some emotional support. Even better, talk to others you know who are living with HIV and if you don’t know anyone then ask your clinic whether they have or know of any peer support services. Positively UK offers one to one and group support to gay men right across London as well as Recently Diagnosed weekend workshops. There are lots of us around that have been through the stuff you’re going through and can share the benefit of our experience.
Being diagnosed with HIV does marks a milestone in our lives and this undoubtedly has an impact on how we feel about ourselves. To start with it might feel like the world has caved in and we struggle to think about much else other than what’s happened. But soon enough we realise that we still enjoy going out with our mates and all the other things we enjoyed in our pre HIV life. So don’t be hard on yourself, just take things one day at a time.
If you’ve got a question you’d like answered around living with HIV, please email email@example.com