HIV & The Story I Must Stop Telling



Dedicated in loving memory of a dear friend, producer, club promoter and HIV warrior Spike Rhodes 1958-2018.

A few weeks ago, I spoke on behalf of a London based charity at a Connected by Humanity event, entitled: “Stick it to Stigma”. I told my story or at least fragments of my story, but there is always a story within a story, within a story. I contacted the coordinator of the program a couple of weeks before and let them know I needed a break for now.

At the event before taking the microphone, I sat in the audience and remembered all forty of those I loved, cared for and supported over the last decade in the HIV Sector, that are sadly no longer with us. I could see their faces, hear their stories, see their vulnerable beauty, our shrieks of laughter and see their tears. Remembered times when they were so angry over the stigma they had faced and supporting them in negotiating in their relationships when is the right time to disclose their status. Coming to me again and again as they faced rejection due to their HIV status from family, friends or from lovers.  I could see all those forty faces of those I have loved, deserved our love and certainly more compassion. I also thought about the clients I have worked with that struggle to adhere to their medication or engaging with their clinic due to lived stigma around HIV.

I am the third generation wave of HIV. We are now over thirty years into the HIV epidemic and living in the western developed world I can expect to live out into my old age with HIV. Now 14 years on from receiving my diagnosis I am privileged to have the best healthcare and support from those around me. I have always felt a duty to keep these stories alive so for my first partner and those I have lost after him, stories do not go forgotten, we should not forget the early AIDS epidemic, the heroes and heroines, we lost on mass.  As I stood up and took the floor at Connected United by Humanity, I could hear their ghosts cheer and feel their happiness as when lighting my Friday Shabbat candles the night before, we had discussed this being the last time I would tell my HIV story the night before.

It is time to give myself permission to tell a different story as HIV is only one part of me. I am cutting down the amount of work and volunteering I do in the HIV sector. Telling my HIV story at one time felt so empowering, but for now it is important to hold on to the memories of those I have lost and time to provide myself with some nourishment.

I am pleased that I have found Connected by Humanity and look forward to working with them in the future and welcoming you to their future events. It is my belief that we will only stop stigma when we start bringing, celebrating, exploring, and working with differences together. That is what I enjoy about Connected by Humanity as it lets people explore their intersecting identities and life experiences live on stage and makes the audience listening feel part of a community.

For more information about Connected by Humanity next event please go to. We are still looking for performers or speakers for this Thursday and future events:


2 thoughts on “HIV & The Story I Must Stop Telling”

  1. Great blog – it’s people like you that have helped to change the Stigma attached to HIV/AIDS. Look at what has been achieved in 30 yrs – it’s hard work trying to change the mindsets of people but it is happening Thanks to you xx

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