Blog by Julie Reynolds, followed by postscript by Jane Shepherd
January 2026 will mark 35 years since I was diagnosed with HIV. A month later, I turn 60. It’s been a long, learning journey. In 1991, an HIV diagnosis was just about the worst thing that could happen to someone. Just a few years earlier, every household in the UK had received a government leaflet: “AIDS: Don’t Die of Ignorance.” My diagnosis echoed what I feared about myself—that I was stupid, impulsive, irresponsible and this was just another consequence of that. Everything negative I’d been told about myself was confirmed. I always felt like an outsider, like other people knew a script for life that I didn’t even know existed. So I embraced HIV the same way I embraced the wind on a cliff top as a child—leaning into the gusts with my coat open, heart palpitating with terror and excitement.
I was overwhelmed with anxiety, not just for myself, but for what this meant for the people I loved—the shame my family might feel watching me die. In those early days of HIV, when there were no effective treatments, this felt inevitable. To prepare myself, I ploughed through the National AIDS Manual (the trusted source of information before i-Base, it was the bible for HIV related opportunistic infections), as big as the telephone directory, considering all the opportunistic infections and trying to understand.
I had conversations with family and friends about dying—what it might look like, what they would do when I reached the point of no return. Talking openly and humorously about planning an “exit” isn’t meant to trivialize life. It’s not about glorifying death or influencing others. It’s about honesty—naming the unspeakable, not hiding from it.
My mother said she’d smother me with a pillow. My sister offered laburnum. A nurse friend promised a lethal dose of morphine. Everyone I asked wanted to help, one friend joked they’d throw a plugged-in toaster into the bath with me. We laughed. We imagined forming an orderly queue. Everyone wanted to “get rid” of me. But through that laughter, we opened conversations about how we wanted to live.
When I was diagnosed with HIV, I didn’t feel silenced by shame or fear. Maybe, I’d already begun unpicking the damage that silence had done to me five years earlier – long before HIV entered my life. Back then, I carried the weight of unspoken trauma, the internalised shame of being raped and telling no one. Keeping quiet had almost broken me. So, I made a decision, that I would be open and I would talk. It wasn’t impulsive, it was necessary. I would talk about difficult things. Not as a cry for help. Not as a spectacle. But because talking was living.
So, I made a decision, that I would be open and I would talk. It wasn’t impulsive, it was necessary. I would talk about difficult things. Not as a cry for help. Not as a spectacle. But because talking was living.
There was also relief in the diagnosis. It sharpened my focus. With nothing to lose, I could just be. I didn’t need to conform.
I have always thought about death and dying. Even as a child, I found peace in graveyards. I would play in the long grass, listening to the birdsong and the whir of insects. I would lie on the graves and wonder what the person died of and if everything was shiny and bright after death. I knew every gravestone was once a life and I wasn’t afraid of the dead.
Another childhood haunt (pardon the pun) was the sawmill, when we weren’t creeping in collecting sawdust for our rabbits and setting off machinery we played dead in the coffins that were stored there. Death wasn’t something to hide from — it was always part of the landscape.
At university, I lived in a tiny attic flat and fantasised about using a coffin as a coffee table. I liked the idea of it accumulating stains—wine, coffee, food—each mark a story, a moment, a guest. A decoupage of life. Morbid? Maybe. But not to me.
The first person I met with HIV was Eric—a vibrant, charismatic gay man with a Ford Anglia and a dog called Bucket. We had wild times. I helped him read; he introduced me to a world I didn’t know existed (that’s another story). When he moved to Oldham and got a boyfriend, we stayed close. When he was dying, he was so heavily medicated they gave him a fridge just for his myriad of pharmaceuticals. We listened to music that he would have for his funeral, quietly holding hands we said tearful goodbyes and I said that it was ok for him to go. When he died one of the nurses didn’t turn up so I helped lay out his skeletal body, while friends arrived, with get well soon cards and flowers not knowing he had already gone.
I’ve learned that life is fragile, and that people can live deeply meaningful lives with chronic, disabling, even terminal conditions. My beautiful friend Cathy would have endured anything to be here, to live longer to see her children grow up and I would have gladly taken her place if I could.
I can’t remember when I didn’t think about how and where I would or would not like to die. Now when I visit places and sit fully in the beauty, I consider how lucky I am to be here, to see, feel, hear, smell and experience the wonderful world! Then think this would be a lovely place to die and imagine what that would look like. I guess at this stage it’s about wanting to die content.
I know this perspective comes from privilege. I have access to treatment, care, and community. I have the luxury of not having to fight for my life on a daily basis. Many people around the world don’t. Global HIV budgets are being cut, all the progress that has been made is rapidly being reversed. Stigma may still kill, but if you’re living with HIV and don’t have access to medication you get sick, you die. That is the brutal truth.
Silence = Death. That message is tattooed on the bones of the HIV community’s history. Talking about death helps me return my focus to life—to solidarity, advocacy, and action.
Silence = Death. That message is tattooed on the bones of the HIV community’s history. Talking about death helps me return my focus to life—to solidarity, advocacy, and action. It reminds me of the current global context of HIV/AIDS, and the need to stand not just as a long-term survivor, but as an ally, dismantling stigma, fighting for equitable access to treatment, support and care, and staying loud…and alive.
Talking about dying and end of life resources
By Jane Shepherd
As women diagnosed before effective treatment, we have unique perspectives on death, dying and a life cut short; perspectives that have been under-researched or documented. In fact, all women diagnosed with HIV will probably have thought about death at some point – it is embedded in the story of HIV and AIDS. As we age with HIV, we may witness our parents’ death and come to realise that we may be there when our partner or friends die. We may already be living with other life-limiting conditions such as heart disease or cancer. Death is the conclusion of life, and it should feel natural to prepare for this event. Below are some resources to help us think about living with a life-limiting illness (called Advance Care Planning) – how we might talk about it, for ourselves or loved ones, and how we could plan ahead.
HIV Matters podcast. Series 3, Episode 5: Michelle Croston talks to Emma Davey, senior nurse specialist in palliative care. Podcast available on all platforms.
Age UK, Talking about dying video.
Most cancer and dementia charities have lots of information on Advance Care Planning (not legally binding) and legally binding agreements such as a Will, Powers of Attorney and Advance Decision to Refuse Treatment (also called a Living Will). Start with this booklet Planning Ahead.
To help have a more structured and holistic conversation about a patient’s needs, a healthcare team may use one of these. They could also be used to help think or talk about making an Advance Care Plan. Preferred Priorities for Care document and a Holistic Needs Assessment.