Strength in Support

Richard Jeneway – now a trustee at Lunch Positive – recounts how he recovered from some of his darkest moments living with HIV/Aids

Writing this during the Covid pandemic takes me back to the HIV/Aids epidemic of the 1980s and 90s with messages of utter doom and gloom. The truth is none of us know what to expect of the future, which for me resonates with the past.

It was late summer in 1995, I was working my dream job, my social and home life with my partner was great. I began to feel unwell while delivering a presentation at work and felt so poorly that I went home early. By the end of the day I had been hospitalised with symptomatic pneumonia, which was a bolt out of the blue accompanied by high levels of HIV viral load with my CD4 count on the floor, leading on quickly to CMV linked to late-stage Aids.

In October of that year I was advised that my life expectancy was six months at best, and to make all appropriate arrangements.

Richard Jeneway

Chris Jepson - The Identity Project

My work finished shortly afterwards with my employers, who were understanding and generous. With the new medication my health improved a little, enough for us to buy a VW camper and tour around Cornish beaches reliving my surfing past and having fun.

Daily I was attached to a drip to help combat the CMV, a disease which can create lesions within the brain, stomach or eyes. David would hook me up in the campervan to make this travelling possible, what was there to lose? I was dying anyway and he wanted to make our little time together memorable.

We took our travels further in 1996 driving through Spain to Sitges and also visiting the Denholm Elliott HIV hospice in Ibiza. With improved medication by 1999 and support from friends, the hospital and a caring social circle in London, we felt supported and safe.

David, angry about his own diagnosis, took his behavioural lifestyle to the extreme, trying to ignore his HIV and not adhering to his medication. At that time HIV without doubt defined me. My partner was in palliative care, I had lost my career and home with little to look forward to. My feelings became numbers and I watched David die before my eyes.

I’d encourage anyone newly diagnosed or struggling with their HIV to seek support from local HIV organisations... Their hard work can never be understated.

Following his funeral, a well-attended celebration of David’s life, I was left emotionally drained. I have a vivid image of being handed a supermarket carrier bag containing his army boots by a crematorium worker. Is that all that remains of that man in the end? Is that all we can leave behind?

That time for me was a desolate period. Alone in poor health with only my rescue Jack Terrier, Sonny, who gave me the reason to carry on, I can remember those weeks and months with clarity.

As for stigma, I can honestly say that I got none from friends or close family. Not like my god-daughter who at 10 years old wrote a story about her dead godfather, David, which generated so much hate at her school that her parents had no option but to move her to a different school. This they kept from me for

Over the next couple of years I started to live again, gaining confidence, and my health improved with new meds. Attending a gym, and generally keeping fit alongside a social life, still grounded by my dog when I could have easily gone off the rails because of the need to be needed began leading to some interesting short-term relationships based on sex and drugs.

I volunteered at London Lighthouse briefly, working with a group of people living with CMV and HIV, which I found to be an emotional rollercoaster as forming friendships with people who were dying affected me so profoundly I had to step away.

By 2004 I had met Tony, but my sight was deteriorating fast, although I could see him clearly back then. He had then, as he does always now, a cheeky smile and a positive attitude, a kind and caring man who has been spared a positive diagnosis.

My sight faded rapidly and I was registered blind in 2006. This was a very difficult time for me but with support of those around me I adapted to never being able to see again. We moved to the Brighton area in 2007 (with support from local HIV organisations) and I attended support group meetings, moving on to become a co-facilitator. As time passed, gaining knowledge of local gaps in provision of services for people with or affected by HIV, I went on to co-found a small charity focusing on wellbeing and social interaction in the HIV+ community.

My volunteer roles have continued to evolve, becoming a trustee at Lunch Positive and as a mentor working with people who are newly diagnosed.

I am no longer defined by HIV as I was in the past. I am a stronger and more well-rounded individual because of my experiences, however I fully understand this is not the same story for everyone. I’d encourage anyone newly diagnosed or struggling with their HIV to seek support from local HIV organisations as they provide vital and caring support for all those who need it. Their hard work can never be understated.

As we approach another World Aids Day, let us remember those who have passed with love.

Let not the memory of others fade for we are here today in trails that they blazed. Please do not allow shame or self-imposed stigma to impact on your health. Help and support is out there if you need it.