DIVA long read: Invisible No Longer

Danielle Mustarde shines a light on the needs of LGBTQI+ women affected by HIV this National HIV Testing Week


National HIV Testing Week runs from 17 – 24 November 2018


Around one third of people living with HIV in the UK are women.


On top of that, a quarter of all new diagnoses are women. Yet women living with the virus remain invisible in the narrative surrounding HIV in the UK.


And then there’s LGBTQ+ women. When it comes to the national response to HIV, all women are by default assumed to be heterosexual. Even now in 2018, there’s still a real lack of understanding of the diversity of sexualities of women living with, and at risk of, HIV. 


Targeted campaigns are typically aimed explicitly at men who have sex with men (MSM), while the sexual health needs of lesbian, bisexual and queer women are largely ignored. A 2016 article published by the Sophia Forum, an organisation which promotes and advocates for the rights, health, welfare and dignity of women living with the virus, reinforces this:


“The sexual health concerns of lesbians and bisexual women have often been invisible, although studies conducted around the world show that lesbians and bisexual women face multiple vulnerabilities to  sexually transmitted infections (STIs), including  HIV.”


Very little exists to support the specific sexual health needs of queer women in the UK and, where it does, it’s often confined to the work of LGBT-focused charities like the LGBT Foundation, one of the first organisations to provide specific information on HIV to women who have sex with women (WSM).


But change is happening, and earlier this year, Terrence Higgins Trust (THT), the UK’s leading charity in the fight against HIV, launched a report alongside Sophia Forum, which aims to shine a light on women affected by HIV.


Women And HIV: Invisible No Longer is the culmination of a year-long project which explored women’s needs and experiences with HIV. Co-produced with women living with and affected by HIV, it draws heavily on the day-to-day experiences of women in a bid to understand what HIV really means for those living with it in the UK today.


Hoping to further agitate conversations around LGBTQ+ women affected by HIV, DIVA spoke to one woman to hear her experience firsthand.


This article first appeared in the June 2018 issue of DIVA magazine 



Florence Obadeyi is 46 years old and from Hull. She identifies as bisexual and was diagnosed with HIV when she was 28 years old and pregnant with her son. Florence initially thought her diagnosis meant she was going to die.


“I didn’t know there were other people living with HIV,” she explains.


Now, she volunteers with THT and is passionate about tackling HIV stigma – particularly within African women’s communities – as well as promoting the message that people living with HIV on effective treatment can’t pass it on. This is Florence’s story, in her own words.  


“When I was first diagnosed with HIV, I was pregnant with my son. I went to the hospital for my regular natal testing and they asked me to take a HIV test. I remember saying, ‘Why are you asking me that – I’m well, there’s nothing wrong with me!’


"On their advice, I took the test anyway and two weeks later got a message to say I should come back for further tests. At the time, I thought it might be something to do with my diabetes, or anaemia, or something else routine. I was shocked when I found myself sitting in a consultation room with my midwife who told me clearly, 'Florence, the HIV test has come back positive'.


"Rather than just letting me leave – thankfully – I was given an hour of counselling with a psychologist and my midwife. They asked me what I understood about HIV and – remember this was in 1999 – I told them that my understanding was that everyone with HIV dies. I didn’t know about any medication so I panicked and started crying. The stress I felt at that moment was unbelievable. 


"The healthcare staff tried to comfort me. They told me that there was medication, and all I remember asking is, ‘When can I start?’ After that, I booked an appointment with the consultant and they explained how the medication works, how to feed your baby, and what the procedure would be during both pregnancy and birth.


"The best thing that came out of that meeting though, was when she asked, ‘Would you like to meet other people with HIV?’ I didn’t even know there were people living with HIV, and I certainly didn’t know that there were support groups. My consultant gave me a number to call, and it was then that I was put in touch with a wonderfully positive woman who invited me to a support group.


"‘Oh, don’t worry about it. It’s been five years since I was diagnosed and I’m still alive, yes I’m still alive!’ the first woman I met at the support group reassured me. I was really surprised. That same woman invited to me to the next meeting and this time it was all women.


"I couldn’t believe my eyes. They were all dressed up nicely, nails all done, some coming from work, some with children, some married, some single. It was really encouraging to see so many women doing well despite their diagnoses. 


"It was through them that I was able to pick myself back up. It was a truly positive movement."



"Over the years, I found out about other support groups and eventually found one that was made up of Africans. The food was African, the issues we talked about were African issues, and we spoke about HIV and everything in-between. Eventually, I became a volunteer and would help with the cooking. I dived into the role, which really helped me to cope. 


"Being part of a group was what finally allowed me to get my self-esteem and confidence back. Still, it took me two years before I built up the confidence to tell my brother about my HIV status. I’d told my sister immediately because, at the time, she worked at the hospital where I was going to have my baby. She’d said she was ok with it at first, but over the years our relationship deteriorated.


"I think she lost respect for me, because in the beginning she thought I was dying and might not live long, but the longer I carried on, the further she distanced herself from me. 


"And then there’s sexuality.


"As far as I know, my family still don’t know about my bisexuality. My sister was Christian, and I’d heard her in the car with her children telling them that gay people are sick people and that they have mental health problems – so I knew not to tell her.


"Unfortunately, she died of cancer a few years ago, but if her husband or nieces or nephews were to find out that I’m bisexual today, I wouldn’t care so much. I feel more confident now."




"My experience of being bisexual is closely linked to my being African. If I wasn’t African, and I was white, I think my life might be better.


"Being African, it’s not easy for me to be out, or let my African friends know that I’m bisexual because a lot of them are very religious and they think being gay or bisexual is a sin. Religion plays a huge part.


"I have a lot of Nigerian friends who – without knowing that I’m bisexual – send me derogatory films and links through WhatsApp about LGBT people. If they knew I was bisexual, they wouldn’t be my friends.


"I don’t believe in God and don’t go to church, but when I used to live in London and volunteer as a community engagement worker, we used to go out and talk to people, but it was always difficult to get into churches because you had to start with the pastor and many don’t accept gay people.


"In order to make progress, we need to engage church pastors, to show them the reasons why it’s important not to scare people about HIV, how that can lead to people not getting tested or, more generally, to mental health problems. We need to find a way to build respect for both HIV-positive and LGBT people in faith. 


"For pastors to be able to address and accept their congregation and support those who’ve been diagnosed could really change things – at the very least in those communities having the knowledge to be able to stop any further spread of HIV.


"On the other hand, things have improved in terms of LGBT rights and particularly same-sex marriage, so as long as I keep my sexuality and HIV status within the non-African community, I’m free to express myself and to say openly that I am bisexual; but honestly, with other Africans and my family, I try to keep it to myself.


"That is, except for with my husband. He’s been with both men and women too, though we’re in a  monogamous relationship with each other now. I’m comfortable with his bisexuality, and he’s comfortable with mine. And actually, every once in a while, we go to gay bars together!


"Still, as Invisible No More’s research illustrates, it feels like only heterosexual women exist in HIV data – and it shouldn’t be that way. I know that there were other bisexual people in the support groups I was involved in, but they never really came out. None of us did.


"There’s not enough out there to encourage women to talk about their sexuality in HIV communities, and especially within African communities."



"African women living with HIV aren’t aware of the treatments available. Certainly not as much as MSM in the community, anyway.


"The men talk about it a lot, they take their partners to activities which are arranged for them, but it’s not the same for women. Here, women are still very much invisible. When anyone talks about PrEP (Pre-Exposure Prophylaxis), a course of medication which can prevent the spread of HIV, no one talks about women, and in turn, women don’t know about it.


"There need to be adverts representing a diversity of women which also explicitly include lesbians and bisexual women. I’ve seen adverts about HIV on buses and trains, but it’s not showing the diversity behind HIV. It might show a single man or woman, but never anyone who’s married with kids or that’s visibly lesbian, bisexual or pansexual.


"Whenever we talk about women, we need to include lesbians and bisexual women because HIV is still a risk in the community and people need to be aware. They need to know about PrEP, and they need to be encouraged to take tests.


"Similarly, with healthcare professions, in my experience, it’s more erasure than stigma. They assume because I have a child and a husband that I’m heterosexual.


"When I fill in forms, I tick bisexual and I’ll correct people if they ask me – the issue is that they don’t."



So what does the future hold? Invisible No Longer is already making waves in the UK, so much so that at a recent conference, Public Health England (PHE) made a commitment to produce women only data tables and a spotlight report on women and HIV.


“It’s really heartening to see Public Health England responding so quickly to our recommendations,” Debbie Laycock, head of policy at THT, told DIVA back in June.


“We named our report Invisible No Longer because we’re passionate about insuring that women are included and fairly represented when it comes to HIV – in everything from  research and data through to the design and delivery of services.


"We warmly welcome women only data tables and a move away from the presumption that all women are heterosexual, as our research found that to be far from the truth.


“We will now work alongside PHE and Sophia Forum on a spotlight report specifically on women with HIV to ensure further progress, including greater potential for targeted HIV prevention interventions for women.” 


To find out more visit tht.org.uk/invisiblenolonger or sophiaforum.net. If you’ve been affected by this story, visit tht.org.uk/our-charity/get-help-now. For more on National HIV Testing Week, from 17 – 24 November 2018, head to hivpreventionengland.org.uk


This article first appeared in the June 2018 issue of DIVA magazine and has been re-shared to raise awareness of National HIV Testing Week.



Only reading DIVA online? You're missing out. For more news, reviews and commentary, check out the latest issue. It's pretty badass, if we do say so ourselves.


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