Written by Jane Shepherd

HIV testing week comes round again. Such an important week in the calendar because getting tested for HIV can literally save a life. I am a volunteer peer supporter at St Mary’s HIV clinic in Portsmouth, so I chat to patients who have often just been diagnosed. They always express wonder and surprise when I tell them that I have been living with HIV for over 30 years and that treatment today is easy to take and if you take your medication daily you can expect to live a normal life span AND you can’t pass HIV on. So many people still think of HIV as life limiting and shameful … and it’s neither.

In 1990, when I went for my HIV test in London, there were very few women diagnosed in the UK and there was no treatment. I was given eight years to live and a number to call to speak to another woman living with HIV. This was at the end of Margaret Thatcher’s time in government, Madonna’s Vogue was topping the charts and the gay community had been decimated by AIDS. The government’s Section 28 law – which forbid schools and councils from talking about homosexuality – and a hostile right-wing press meant people with HIV and AIDS were vilified. It laid the groundwork for forty years of stigma, something we still feel today.

Not enough people know that HIV is now treatable and preventable with PrEP, and lots of people don’t associate HIV with women. During the broadcast of the TV drama, It's A Sin, one of the most popular Google searches was, ‘Do women get HIV?’ Before we go any further … yes, they do! [1]There are now nearly 32,500 of us living in the UK.

When I was first diagnosed, I joined a support group of women living with HIV. We came from across the country to meet in a tiny office above the bustle of Kings Cross station. Just seeing other women get on with their lives, helped me enormously to get on with mine. We would talk about things like, how to tell other people we had HIV, how to have pleasurable sex, how much we hated (or loved) condoms, when to tell our children. We shared stories of our frustrations and fears, especially of being invisible and not having our health concerns taken seriously. All these things are still priorities for us and are why peer support is so important. Just knowing that you are not alone and that other women have experienced the same as you, can be so empowering. 

We experience HIV differently to men – our bodies and reproductive choices are very different for a start. When this overlaps with gender inequality and health disparities, we can find ourselves marginalised and unheard. Services don’t fit, health problems go ignored or disbelieved, health messages miss the mark. These have consequences. I have supported women who were diagnosed late. They often visited their GP many times before they were offered an HIV test; one woman was told that she didn’t need a test because she wasn’t promiscuous or injecting drugs. It’s this kind of stereotyping that puts women’s health at risk. It doesn’t matter if you are only having sex with your husband or if you have a different partner every week – HIV is a virus and it doesn’t care.

Women need to be reached with the right messages and then feel safe and supported to take an HIV test or use condoms or sign up for PrEP. If we test positive for HIV, we need to be offered peer support as this will help us stand up to the stigmatising attitudes that we ourselves might have or might hear from others. We need to receive non-judgemental care so that we keep taking our treatment and feel listened to when we have to make life choices. Women get HIV. Women have HIV. And women have a proud history of fighting for the services they need.

[1]Statistic from - https://www.nat.org.uk/about-hiv/hiv-statistics