When you are diagnosed you are encouraged to make contact with anyone who may have been exposed. So, how the hell do you do that when you have died?
I was diagnosed with HIV in 2007 after the death of my daughter’s father (we’ll call him ‘B’), you can read more about that here in my previous article. Not long after my diagnosis I was discussing with my consultant my fears and desperate need of wanting to inform B’s previous partners that there was a risk they may have been exposed to the virus.
When someone is diagnosed, you are encouraged to make contact with anyone who may have been exposed. So, how the hell do you do that when someone has died and they simply can’t take on that responsibility and do it for themselves!?
Well fate intervened. The same day I had seen my consultant; I got back into the office and was checking my emails. There was one from a support group that I had attended shortly after my diagnosis.
The research team for a BBC documentary were looking for HIV+ people to interview; people who were willing to be filmed and to speak openly to Stephen Fry about their experiences of life with HIV.
I knew this was an opportunity to share B’s story and I thought, well if the BBC & Stephen are involved it will be handled carefully! More importantly, I knew that if by speaking out, even one person B knew went and got tested & therefore sought access to treatment, then it would be worthwhile. I decided to get in touch with them.
The producer and his assistant jumped at the opportunity to speak with someone who didn’t fit any of the traditional stereotypes of a HIV+ person; in so much as I am white and heterosexual British woman. A date was quickly arranged, they came to the house and we spent several hours recounting the previous 18 months, B’s death, my diagnosis and my daughter J receiving the all clear. We discussed the implications of speaking out and they left the decision with me. I knew it was the right thing to do.
A date was arranged for Stephen to come to our house, with film crew in tow and spend the day with J & I. I have always had the greatest respect for Stephen and the way in which he tackles and handles subjects with aplomb. We were able to discuss the subject, and many others, in depth, yet of course only snippets of our conversations made the final cut.
When the programme was due to air, I tuned in with mixed emotions. At this point I had only made my nearest and dearest aware of my status, and so there were many relatives and friends who had no idea. It simply hadn’t come up in conversation or many I hadn’t seen in person since the funeral. I knew that many may well be watching as the programme was scheduled to air at peak time viewing.
The first time I watched the programme through, I took very little of the content in. I was simply sat waiting to see myself; hoping I had done B and myself justice, that I didn’t come across as a gibbering wreck and that it was handled sensitively and not provocatively!
In the first few hours and days after it aired, I started to receive message after message from people I knew, praising my bravery and courage for being open – to this day I haven’t received a single negative comment. I even had a random lady in the queue at the supermarket the week after put her hand on mine and said ‘Good on ya girl, for taking part in that programme’.
As time passed I did receive a couple of messages from partner’s B had had relations with, who had seen the programme and as a result had been for testing. Sadly each that did get in touch, had also tested positive and so were, like myself, coming to terms with their diagnosis.
In the first instance, I decided to use my story, to be vocal about my experiences, to hopefully reach those who may need to know. I now continue with this to hopefully empower and encourage others to have the strength to do the same and to engage people in frank and open conversations about sexual health. There is no shame in saying ‘I am not a Nun; I have a sexual history.’ It is just that mine now includes three extra letters!
Stephen Fry: HIV & Me – I appear at around 29minutes:
Lizzie – (@fashionthing on twitter)