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For many people, the letters HIV invoke the three big Victorian taboos which linger long after that era has passed – namely sex, homosexuality and death. No matter how ‘HIV friendly’ we’ve all become as a result of efforts by organisations and individuals (rest in peace Princess Diana, you did a lot for us) the subject still isn’t much talked about in ‘nice’ society. Those of us who need to disclose our status still feel a huge amount of stigma when faced with this very real challenge.

So how do you go about telling your nearest and dearest that you are HIV positive? Here’s how I went about doing it. When my partner, Richard,  had to go away the first Christmas after my diagnosis, I had plenty time to think about disclosure and whom I should, or should not tell.

I didn’t want to tell my mother, as she was old and infirm. I didn’t particularly want to tell my brother just then, as I wasn’t sure how he’d react. I felt terribly alone and lonely, despite the presence of my mother and brother. I missed Richard terribly. On New Year’s Day I went out for lunch with an old friend of Richard and mine, Simon. Like others, he was well aware that I had been seriously unwell and like others he had only been told that I had encephalitis. Over that meal I revealed the truth of my diagnosis to him. He was curious, concerned, sympathetic and understanding. A first hurdle overcome. However, I did want someone close to Richard to know, in case the worst happened and he needed immediate support. So I decided to tell Maddy and Suzie, a lesbian couple who are Richard’s oldest friends in the UK. A few months later, as I was helping them to make preparations for their Civil Partnership ceremony, I told them. Shortly after they left my home that day, I received a phone call from Suzie, in tears, telling me that they still loved me. They have been constantly and incredibly supportive and caring.

Friends first

When I told Richard that I had told his friends about my situation, so that they could support him, he said that he wanted me to do the same – telling some of my friends – so that they could support me. I agreed and contacted my oldest friends, Pip and David. As well as being close to them I’m godfather to their three children, all now in their 20s. When I was asked to be godparent to their first-born I knew I was gay but I wasn’t exactly out and proud. So when they asked me I replied “Yes … and a) I’m not religious and b) I’m gay.” “Fine,” they replied, “neither is an issue.”

I told Pip and David about my HIV status and at that time we agreed we wouldn’t tell the children. As they grew older and I was open about my status and posting updates on Facebook, I suggested “now is the time.” Their parents agreed and so we met in a cafe and told them one at a time. And of course, they were fine. A bit surprised, a bit shocked, but they took it all in their stride. “What the heck,” was the reaction. “Let’s just get on with it.”

What about work?

Back in 2006, telling people about being HIV positive wasn’t quite so easy and nor did I expect such a matter-of-fact reaction. I was off work for four months and, if I’m honest, didn’t feel much like going back. True, the medication had taken a hold and I could walk and talk (and I still wasn’t dead) but the psychological fallout of the diagnosis was all-enveloping. There were days when just lifting my head from the sofa was enough; the idea of catching a train, walking into a big Government department in Whitehall and managing people was laughable, had I had the energy to laugh.

Richard, however, was having none of it. Aided and abetted by Dean, my community nurse, he persuaded me subtly and not-so-subtly that going back to work would be good for me. I wasn’t going to sit around moping forever, he insisted and I needed to start looking outwards. So, in early January 2007, four months after diagnosis, I did as I was told and went back to the FCO, initially working two days a week (mainly from home, it must be said) for four weeks of a phased ‘return to work’ programme. After this I would increase my hours to four days a week, working from the office for four hours at a time.

Before I returned to work I felt it necessary to disclose my status to my line manager. She was also a friend and, up to this point, knew that I had encephalitis only. When I told her the truth she was shocked and also concerned and empathetic. However, she felt she had a duty to inform Human Resources, which I didn’t disagree with. They knew I was gay: under their rules I had had to disclose this to them in case I was ‘compromised’ in any way. This may sound draconian until I tell you that until 1991, being gay debarred you from working there at all.

So she told HR and at the same time she also advised that I should not tell the people I managed because she wasn’t sure how they would react. She wondered if they might not want to use the same cup as me, or share my keyboard. Or indeed, shun me altogether.

Really?!

I should have thought this through objectively, telling myself that it was almost 2007 and the great falling icebergs and tumbling tombstones of the first AIDS awareness campaigns in the mid 1980s were long behind us. We knew, didn’t we, that HIV didn’t jump from cup to cup, chair to chair or keyboard to fingers? By now, we were a bit better than that; more clued up, less ‘ignorant’ that the politicians of the 1980s would have us believe. Weren’t we?

Fortunately, all these years later, the general public is better informed about HIV and AIDS. There is still too much stigma attached to both conditions, but it is becoming easier to tell the people around you if you are affected by either. There is still much to be done, to completely remove the terrible stigma that those of us with AIDS face, along with the negative behaviour we see from people who still do not understand the situation.

If you need help talking to your nearest and dearest – or the people with whom you work – about any illness or disability that you live with, do get in touch. We can talk more about what worked for me and hopefully make it easier for you too. Call me on 07752 518 925 or click here to email me.

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