Written by Alice Fleetwood


Staying strong, living long: HIV in the UK today

In the UK in 2014, you are much more likely to be living with HIV than dying because of it. On this, the 27th annual World Aids Day, poet Cate Jacobs tells Alice Fleetwood her story.

Cate Jacobs

Cate has been living with HIV for 19 years.

Mine is the story of how many times you can miss the boat. I caught HIV from one burst condom. Treatments were only just being developed at the time. My partner was not on treatment because it was not available. Nowadays he would have been on life-saving treatment and I would have been given PEP (post-exposure prophylaxis) which would have effectively stopped me from being infected.

I was 32 when I was diagnosed and I’m 51 now. Next year, my eldest son will be the same age I was when I was diagnosed. It feels very strange looking at him and knowing what I was going through at the same age.

When I was first diagnosed, my love for my children gave me the determination to live. They passed the baton into the next generation and now I don’t have an excuse to die, for on my darkest days (and some are very dark) they are my twinkles of light.

The burst condom happened around Christmas, 1994. By the New Year, I had developed a horrible ‘flu-like illness’ that was later recognised as my ‘sero conversion’ illness. Following that, I had the most debilitating chronic fatigue. Finally, on Thursday June 15, 1995, without telling anyone, I went for an HIV test because I strongly suspected I was infected.

They did same day testing, but I couldn’t go back for my results until the next day because I had to collect the children from school. It was the longest and loneliest night of my life.

The result came back as positive and I had to tell my partner, Martin, which was the worst experience of my life. How do you give someone you love the worst news they could hear? His soul crumpled and our relationship slowly crumpled too.

I knew he was HIV+ but I felt certain about what I was doing; it was about falling in love with someone.

I was diagnosed positive at the same time that he was diagnosed with AIDS.

I always had a strong sense of justice and I have always been political. I was involved with the HIV community before my diagnosis. At that time, I recognised HIV meant me and my generation, not the stereotypes of gay men, sex workers and Africans.

I was a teenager in the late 70s; I had a colourful sex life before my marriage so I was aware how easily I could have contracted HIV. I decided to put my money where my mouth was and challenge the stereotypes. I volunteered at Merseyside AIDS Support Group as a buddy. I met my partner at the group. I knew he was HIV+ but I felt certain about what I was doing; it was about falling in love with someone.

Martin died in 1998. He left me and went home to his mother nine months before he died. I feel as though I lost him twice – when he left and when he died.

I always felt he would go home when it got close. He had a lot of dignity and dying of AIDS is pretty undignified. He wouldn’t have wanted to put the children or me through it; he loved them dearly even though he wasn’t their birth dad.

I never have and never will blame Martin for what happened. I loved and I still love him. It happened in a moment of love and the consequences of that moment don’t change my love then or now. I can only imagine his pain at having infected me.

There is still so much stigma but I have reached the point where I can state that my HIV status is the most and least important thing about me.

It took a generation for HIV to appear and never go away. I remember life before HIV was around, but my children were born in the 1980s, once it had become an established disease.

There is still so much stigma but I have reached the point where I can state that my HIV status is the most and least important thing about me.

I managed without HIV treatment for 16 years. I stayed healthy with alternative medicine, homeopathy and acupuncture. I trained as a Reiki master. I believe this helped to underpin my good health, but nearly four years ago, I started taking anti-retroviral medication.

I had a very bad chest infection and had a massive allergic reaction to the antibiotics. My CD4 count* plummeted. Prior to this, I had a low viral load and a CD4 count of 350-450.

Since volunteering in the HIV community, there hasn’t been a single year in 22 years that I haven’t suffered a bereavement, so this illness on top of all the normal pressures of life was too much and I turned to conventional medicine.

I woke up one day and felt a real difference and I just knew that my CD4 count had gone up – it actually went from 350 to 680. By coincidence, a friend asked if I was free to climb Snowdon and I thought, for the first time since my diagnosis, I was ready to take on the mountain.

I wore a lace dress and fairy wings with a sash of red ribbons and when I reached the top, I refreshed my bright red lipstick and sang happy birthday to my granddaughter. It was my 51st birthday.

I felt almost shamanic on the ascent, shedding layers of pain, grief and loss. For each rest, I just sat down and cried at how much good health I had, to finally be able to climb the mountain I loved. The woman I used to be was beginning to emerge; it was a metamorphosis.

HIV doesn’t make you a victim, but it does make you vulnerable and you can be strong and vulnerable, which is powerful. My voice comes from the centre of my vulnerability. I think this comes across when I and others speak publicly about living with HIV. Empowerment comes through casting off the ‘victim’ mantle, which often comes with pity. You can’t really be strong and a victim. I found strength through my vulnerability and it has allowed me empathy rather than pity from others. Empathy moves it closer to home and people think ‘it could just as easily be me’.”

Cate Jacobs lives on Merseyside, is a mother of three, a grandmother of four and is editing her second poetry collection, provisionally titled The Space Beside Me.

*A CD4 count is a test that measures the number of white blood cells (the ones that fight infection) in the blood. When they are low, a virus is usually present. People with HIV tend to have a lower CD4 count. In a healthy adult who is HIV negative, the CD4 count will range from 500 – 1,200 white blood cells per mm3 of blood.

Terrence Higgins Trust

* An estimated 107,800* people are living with HIV in the UK.

* Of these, 24% are undiagnosed and do not know about their HIV infection.

* In 2013, 527 people with HIV died.

* There were 6,000 new HIV diagnoses in 2013.

* 42% of people diagnosed with HIV in 2013 were diagnosed late, after they should have already started treatment.

* 25% was diagnosed severely late, having a CD4 count of fewer than 200 cells/mm3.

* Of new HIV diagnoses in 2013, 54% were among men who have sex with men (MSM).

* 27% of people living with diagnosed HIV is aged 50 years or over.

* There has been a 5% increase in testing at sexual health clinics over the last year, most notably among MSM.

Statistics courtesy of www.tht.org.uk

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Written by Alice Fleetwood

@Aliceliverpool is a football-loving, vegetarian, birdwatching leftie but not a social worker as you might presume.