On Tuesday 10th September I was at the Fast Track Cities Conference 2019, which took place at the Barbican Centre in London. I was part of a panel discussion on ‘Gender Disparities in HIV and Empowering Women’.
It was a huge stage and I was very nervous, especially because I had been asked to share my story, which always makes me feel pretty vulnerable, especially in front of such a large audience. However, I made the choice, once again, to bare all my ‘traumas’ for everyone to see, because I believe that the Personal is Political, and there is much in my story that can be learned about the importance of gender justice and women’s empowerment to end HIV.
On the panel there were also: Elisabeth Bukusi, from Kenya Medical Research Institute; Gunilla Carlsson – Joint United Nation Program on HIV/AIDS, Geneve; Prof Jane Anderson, Homerton University Hospital, London; Kim Simplis Barrow, First Lady of Belize; Nicole Seguy, World Health Organisation, Geneve.
I was born in Rome, in the 1960’s. I moved to London when I was 20, following my mother’s death. I received my HIV diagnosis in Rome in 1997. I was 30 years old.
I come from a reasonable middle-class family. My father was a teacher and my mother an archaeologist. They both had traumatic childhoods, growing up under fascism, during the second world war. My mother lost her mother when she was 9, under American bombings, at the end of the war.
My mother was a brilliant woman, the first woman in our family to go to university, and a feminist. She brought me up a feminist too. She took me to demos as a child, for the right to divorce, the right to contraception and abortion, protests to challenge the laws that protected honour killing etc. But she also struggled with mental health issues, and was sectioned, in and out of psychiatric hospital, she had electroshocks and mind dumbing medications. She was the victim of an horrific and violent psychiatric system, which in the 60’s and 70’s tended to punish and suppress rebellious and un-conforming women like her.
As a young woman I struggled myself with depression, anxiety, low self-esteem, and a deep lack of confidence, which lead to experimenting with drugs and sex barely a teenager. There wouldn’t ben anything too wrong with that, that’s what youth is about, right?!
However, the sexist Italian culture of the 70’s and 80’s made it pretty dangerous for me. In Italy, as a young woman, you always lived in a kind of paradox: you were expected to be sexually liberated, but not too much, and if you insisted on condoms you could be considered too pushy, too experienced, or merely a fun spoiler. Sexual harassment and assaults were rife, and I had my fair share. It was hard to be able of negotiating consensual sex. I have only become fully aware of the impact this endemic sexual violence had on my already fragile mental health I in recent times, with the MeToo movement. In the 80’s , in Italy, it was just normal part of being a woman. I am telling this detailed story not because I want you to feel sorry for me, but because I feel it is important to understand the context around young women’s vulnerability to HIV.
The sexualisation and objectification of young women, is still embedded in our gender norms and still puts many young women at risk. We will never achieve a world without HIV, unless we challenge gender injustice.
I received my diagnosis when I was 30 years old, it was a complete shock. I had come back from a holiday in Senegal and I had malaria, one of the doctors suggested I had an HIV test. I didn’t think much of it. When I got the results, it was numbing and terrifying. I thought I was going to be horribly sick and die very soon. HIV stigma affected my already poor mental health and lowered even more my low self-esteem. I felt the diagnosis confirmed what I had known about myself all my life: that I was not good enough, that I was damaged, unlovable, never to be happy. I never felt so lonely, hopeless, and scared.
The biggest challenge for me has been the impact of stigma on having a safe and fulfilling relationship. Love and intimacy were hard enough, for me, coming from all my traumas. But having HIV made it 1,000,000 times more complicated. In the first years after my diagnosis I put up with much abuse, because I thought nobody would want me, that they were so ‘ brave’ to be with me, as I had this horrible virus. It took a lot of support to build me up, to reach a place of self-love. It was only through meeting other women with HIV, that I was able to overcome internalised stigma, and also to see that it wasn’t me who had the problem. It was society with its ignorance, and negative attitudes towards HIV who had the problem. I finally learnt that I deserve love, like any other human being. I always have. Love is our birth-right.
I am now 53 and I worry a lot about ageing. There is quite a lot of evidence that women with HIV experience the menopause with more intense symptoms. Between HIV, other health conditions we often have, like cardiovascular disease and diabetes plus the menopause….Many of us don’t know what is what! To be honest often doctors seem confused themselves! Extended menopausal symptoms can have a huge impact on our quality of life. It is not just hot flushes, you know, we have insomnia, anxiety, loss of libido, combined with the burden of the trauma of a life with HIV. There can be a triggering effect. Women with HIV need a lot of support during this time. Many of us are weary of taking more drugs on top of ARVs and we will resist starting hormone replacement therapy, even when there is a lot of evidence that it can be beneficial.
I am also concerned on the long term effect of medication. Especially as there is such a gender gap in medical research with only 15 to 20% of women involved in clinical trials. The ARV’s I take to keep me healthy, have been mainly researched on white gay men. I have a lot of anxiety about what will happen in the next 10 to 20 years, to my bones, my liver my kidneys…
The women with HIV we see at Positively UK are very diverse, but they face many challenges. For the sake of time I want to mention three, but there is more:
Firstly, Gender Based Violence – the reciprocal links between HIV and gender based violence are well established, and are a reality also in the UK. Women who experience violence are much more likely to be HIV positive, and the vulnerability to violence grows when you have the virus. A study in East London showed a 52% prevalence of Intimate Partner Violence among women with HIV (double than the general population). As women with HIV we need support to be able to identify abuse, to have the confidence to demand for healthy loving relationships, to have the resources to leave the relationship, when it becomes dangerous. We also need long term support for survivors of physical and psychological abuse, especially in the context of HIV, so many of us live with lasting trauma. We live on the edge!
Secondly, addressing poverty. We need access to economic and career opportunities. In the UK women with HIV are disproportionately affected by poverty, although many of us are well educated. Poverty is often compounded by intersectional issues, as over 85% of women with HIV are from Black and Other Ethnic Minority backgrounds. Many of us face issues around racism, hostility towards migrants, trans women with HIV experience transfobia and a lack of access to basic health services. As women with HIV poverty is often exacerbated by poor mental health, and also the other way round!
Last, but definitely not least, lack of meaningful involvement. It is harder for women with HIV to be involved in decision making, especially as many of us live at the intersections of many forms of marginalisation and disadvantage. Women with HIV need ongoing support, training , encouragement to be confident to negotiate with their healthcare team, to stand up to challenges in their everyday lives, and to inform policy.
Meaningful involvement of women with HIV needs financial resourcing and long term investment.
The single most important thing policymakers can do to support women in regards to HIV is to ensure that women with HIV are involved in all decision making processes that affect them.
Long term funding for grassroots initiatives which have women with HIV at the centre. Initiatives that support women with HIV to develop leadership skills, so that we can challenge the power imbalances that are at the root of our vulnerability and disadvantage.
I stand here today speaking to you, at a prestigious international conference, not only because of the excellent care I had from the NHS, but also because I had access to women centred peer support. It was women with HIV, at Positively UK, who picked me up when I was at my lowest. I discovered my own strength by seeing the strength in other women like me. Positively UK supported me, trained me as a volunteer, employed me, and pushed me to take opportunities to be heard. I want for every woman with HIV to have access to these opportunities