I have a distinctive memory in 1999 of walking into one of my first women’s self-help groups and listening to a positive woman explaining the life cycle of HIV.
I clearly remember the drawing on the flipchart: HIV looked like a kind of a giant sun. It was the first time that somebody took the time of explaining to me how the virus worked. What happened when it entered my body, what it did to my immune system. She said simply: “ HIV gets inside your immune cells , called CD4s, which are like the managers of your immune system, and uses them to make more HIV… So the cells which are there to protect you, stop working and become factories of more HIV. This is how your immune system becomes weak, and unable to fight infections” . Until that moment I had no idea what a CD4 was, let alone what HIV did to it and to me. I had bbeen given a heap of pills and just told to swallow them without questions. Or I would have died. None had bothered to explain anything to me. Listening to that woman was an epiphany, and the beginning of a journey into treatment activism.
During that session, in 1999, I wasn’t confident to ask questions, but other women were . Through their questions I learnt a lot about HIV and ARV’s . Since then I have been incredibly passionate about women living with HIV coming together to learn about the virus. It can be hard to take in scientific information on your own, and it can be difficult to sift accurate and up to date information on the web. Collective learning can be much easier and fun!
Sadly there is a lot of evidence that overall as women living with HIV, we have less treatment literacy than other groups. Women often face difficulties taking HIV treatment. During many years of facilitating women’s groups , I have heard often women talking about the challenges they face in discussing with doctors about their treatments, and I know that often we spend a long time on drugs that have disturbing side effects, while we could change to something better. Very often, when we go to our hospital appointments (and nowadays , it may be only a couple of times per year) we feel too anxious to ask to all the questions we have. This is why peer support groups are still very important to get information and learn.
I am very excited that The Women’s Room next week will provide a space for women with HIV to ask all their treatment and health related questions to Dr Verity Sullivan, an HIV physician, who is particularly passionate about the health of women living with HIV.
The group is open to all women living with HIV, we have a crèche, and can reimburse travel expenses to women on a low income. So if you have any questions about HIV, you never dared to ask before…. Come and join us!
The Women’s Room Wednesday 10th May from 5 to 8 @ Positively UK 345 City Road EC1V 1LR
Verity is a HIV/sexual health/contraceptive doctor and freelance health writer. After studying at the University of Edinburgh, she’s been fortunate to work in various places across the globe, including London, Sydney, Malawi and Buenos
Aires. She works to dispel myths relating to all things sex, with a focus on HIV, contraception and LGBT issues. Other interests include dogs in costume and really good cake. Follow her on twitter @DrVesSullivan.
Here are some of Verity Sullivan’s writing: