HIV in the UK is concentrated in a few key populations, including African migrants. And yet, no documented record of personal experiences accompanies the significant amount of epidemiological data on these communities. There is no record celebrating the contribution, resilience and lived experience of Africans living with HIV in the UK, their allies and their response to the epidemic.
African communities remain the second most affected communities with HIV in the UK, after men who have sex with men. Although the epidemiological data on Africans has been well recorded in countless reports, many stories of Africans living with HIV and how they continue to live full lives have never been documented in one book. Very little is known about how African individuals, organisations and allies in the health sector have worked in partnership with UK organisations to get the UK to where it is in terms of meeting its global HIV targets. It has not been well documented how African individuals and communities remain resilient and continue to hold many positions of influence in the UK and beyond. To change people's perspectives on AIDS, it is important to hear and learn from the many voices of the African diaspora in their own words – before these stories are lost.
This narrative is currently missing from the history books and has not been written about before. This project links to wider societal issues such as 40 years of HIV, the Black Lives Matter campaign, and the decolonisation of health care.
Project aim
The project's aim was to develop a book to showcase these experiences and shine a light on this community. The project was led by a steering group of African women who are long-standing HIV activists and advocates, much respected for their leadership within the HIV community (Anderson and Doyal, 2004). The women have been involved in an informal collaborative, supporting, encouraging and mentoring one another in their work over the past 10 years. Their experience spans the story of the African community's experience of HIV within the UK. The steering group felt that it was important that they captured and told these stories to ensure that they were accurately recorded in the history of HIV. They also thought it was key that they lead on the project, telling their stories in their voices, thereby owning the narrative from the outset. The project aimed to showcase 40 stories to coincide with the 40th anniversary of HIV in 2021 (David J Sencer CDC Museum, 2021). These have now been brought together in Our Stories Told By Us: Celebrating the African Contribution to the UK HIV Response (Namiba et al, 2023).
Method
The book was developed through the following process. A steering group was established, made up of five African women living with HIV, one clinical academic and a project manager, who met monthly to prioritise and delegate project work. There were two face-to-face planning meetings and three poetry workshops alongside monthly meetings. The steering group were responsible for identifying contributors through their personal and professional networks and then interviewing them. Some questions to encourage contributors to reflect on their experiences were devised (see Box 1).
Box 1.Some of the questions used to prompt contributors to share their experiences in the book
- Tell us about your life before diagnosis
- Describe the HIV landscape when you were first diagnosed
- What relationships have had the most meaning for you? What has helped?
- What are some of the lessons learnt and what can be done differently, particularly in the African communities?
Contributors were invited and given the opportunity to either respond to the questions in writing (Pennebaker and Evans, 2014; Wampold, 2015) or to be interviewed via Zoom. Critically, contributors were asked to provide a photograph to accompany their story, a small way in which the book aimed to reduce stigma. The main exclusion criteria were individuals who wanted to be anonymous or did not want a photograph included with their story. The interviews were transcribed by a member of the team. The stories were then edited, and decisions were made with regard to the ordering of stories, poetry, postcards, and photographs.
The imagery of the book was carefully thought out, researched, designed and brought to life by a steering group member. The process took 2 years from the conception of the idea to publishing the book.
Findings
Although the stories were a unique contribution from each of the participants, some key themes emerged (Anderson and Doyal, 2004; David J Sencer CDC Museum, 2021). These themes were stigma, peer support, resilience and conversations within communities and families. The following extracts illustrate how these themes have been represented within the individual stories of the African communities and how they have also helped to develop a shared narrative.
Stigma
Throughout the book, participants discuss the impact that stigma has had on them, the communities in which they live and how stigma is weaved into their everyday lives. This is represented in the following extract from Angelina's story:
‘Stigma, myths and misconceptions about HIV which sadly still persist today. Some 40 years into the epidemic!’
Angelina, 2023: 24
Angelina goes on to say that fantastic progress has been made in terms of the science:
‘Unfortunately, stigma hasn't caught up with the science and we still don't have a pill to treat stigma. Stigma is what is killing our communities. Stigma prevents people from testing for HIV, prevents people from accessing and staying engaged in the life‑saving health and social care services that they need to stay well.’
Angelina, 2023: 24
This is also supported by the comments made by Winnie, who states:
‘People have died and continue to die because they can't bear to talk to anyone about their positive HIV status, even in this era where treatment has enabled us to live well and stopped the transmission of HIV.’
Winnie, 2023: 63
How HIV stigma impacts individuals and their everyday lives is best told in the stories of Bisi, Lazarus, Marc and Shaun. Within the following extract, Bisi shares what it was like growing up as a gay man in Lagos at the start of the HIV pandemic:
‘We knew what was happening but [were] too scared to name it. It was like the “candyman”, and we felt calling the name would make it appear. It was not just that; there was also the shame and stigma within the gay community in Lagos.’
Bisi, 2023: 88
Lazarus also talks about the challenges of living with HIV and the impact this had on many people at the time:
‘One major challenge in the early days of the HIV pandemic was the prosecution of many for onward transmission of the virus. It put the onus of telling [disclosure to] a new partner on the diagnosed person. It became a focal point in the campaign to decriminalise HIV. We have been fortunate now that we have made great progress and have the U=U [undetectable=untransmittable] campaign, which effectively reduces the number of new infections.’
Lazarus, 2023: 12
This is also reflected in Marc's extract:
‘In my community of black gay men, there was a lot of fear, a lot of stigma. There was a lot of gossip about people who might be positive, but it was a really, really unknown time, because we were just scrambling around in the dark. When you look at the wider media landscape, it was awful. Everywhere you looked, newspaper reports or headlines certainly weren't always sympathetic. They had no empathy for victims or for people who were affected in any way. It was quite a distressing period in those first 5 or 6 years until I found my feet.’
Marc, 2023: 127
This lack of understanding and stigma led to Shaun having to leave a career he was passionate about:
‘I had no choice really. I was not able to go back to teacher training college as I was told that “An AIDS victim will never be able to teach” and that I should “enjoy the time that I have left”. I believed it!’
Shaun, 2023: 145
Many participants also shared what they had been doing to raise HIV awareness. Charity talks about a standout moment for her when engaging in HIV awareness campaigns:
‘One of my highlights when raising awareness for HIV was when I made a Red (Ribbon) Awareness brooch for Prince Harry, and I pinned it on him.’
Charity, 2023: 37
Within Bakita's story, she talks about how important raising awareness about HIV was for her and her journey:
‘Whilst I was at the University of Surrey, I led a campaign called “It Can Affect Anyone”, with the support and help of so many students, the university and the University of Surrey Students’ Union. I called HIV “it” just to kind of illustrate the ways in which HIV is rarely named, and the stigma surrounding HIV.’
Bakita, 2023: 82
Stigma continues to remain a key issue in the lives of people living with HIV. The book helps to capture the lived experiences of what this means to the African community living in the UK.
Peer support
The importance of peer support and connecting with other people as a way of living well with HIV is a common theme within the participants' stories.
Within Angelina's story she articulates how peer support gave her the strength to cope and how relieved she was when she knew of other people living with HIV:
‘One of the other things that enabled me to cope was having access to peer support. One day out of the blue, one of my friends said to me, “Angelina, I have something to tell you”. I asked her what it was, and she said, “I have HIV.”Yes! I thought to myself. Because up to that point, I [had] thought I was the only woman in London living with HIV.’
Angelina, 2023: 23
Winnie also shared her journey of realising how important it was to her personal growth and survival when she connected with other people living with HIV:
‘In the 1980s, there was no living with HIV, just dying with it in the most horrendous of ways. It really was the stuff of nightmares. When I left that support group that day, my thinking had already started to shift from focusing on dying to thinking that perhaps I had a chance to live again in a more fulfilling way – just like the women I had seen and heard speak. I went back to the hospital a few days later.’
Winnie, 2023: 61
Reflecting on life growing up living with HIV, Bryan and Mercy shared the important role peer support had for them:
‘Peer support was amazing, it acted as a temporary safe place for me to express anxiety, concerns and confusion and other emotions regarding growing up with HIV. I met with people my age who were different but understood the loneliness, the anger and, more importantly, the silence of HIV at home. Peer support slowly became a home away from home where I could express my feelings and be met with some understanding or, at the very least, a listening ear.’
Bryan, 2023: 91
This is echoed in Mercy's account of her experience:
‘When I met young people living with HIV, they just got it. I didn't have any explaining to do, just knowing looks, laughs, and deeply felt sighs of exasperation. I wasn't the only one. They all knew the ins and outs of what it is like to navigate what it's like to grow up with HIV in a UK context. It started me on a journey that I could never have dreamed of.’
Mercy, 2023: 132
It was evident that peer support had enabled the participants to live well with HIV. Most of the contributors to the book also went on to become peer mentors and run peer support groups as they realised the central role this played within their HIV journey.
Resilience
A key theme that emerged was the concept of resilience and how participants had engaged in a variety of activities that foster this sense of resilience and self-reliance.
When reflecting on the impact of her diagnosis, Charity stated:
‘I'm thankful for the support I received in all my struggles because, through it all, I have learnt that I'm Resilient. For that, I am forever grateful because getting back up again and again! Leads to Self‑Realization.’
Charity, 2023: 34
This is also captured in Winnie's comments:
‘As ironic as it sounds, I feel that living with HIV gave me a purpose to strive and to live for. Many naive and uninformed people continue to believe that living with HIV is one of the worst things that can happen to you. I can say that, like with everything in life, it depends on who you talk to. Different people have different experiences.’
Winnie, 2023: 64
When exploring peer support and how it helped develop a sense of resilience, Rebecca and Bryan described how they have used it to help support others:
‘I have heard from many [people] what a positive impact my support has had on their lives, but what they do not know [is] that each and every encounter I have had has impacted [on] me and made me more determined to continue to do the work I do, to speak on behalf of those that are unable to do so for themselves.’
Rebecca, 2023: 56
Rebecca goes on to say:
‘There is nothing more valuable than watching someone I had the privilege of meeting in their most vulnerable circumstance thriving because of that interaction, that is a wonderful achievement and the most important one for me.’
Rebecca, 2023: 57
Bryan shares some important insights into what helped to build resilience in himself and then in others:
‘The main ingredient to successful peer support is empathy, I can't stress that enough. My experience has helped me nurture my compassion for people with stigmatising conditions. If I didn't have HIV I doubt I would be as liberal.’
Bryan, 2023: 93
Developing resilience and supporting others based on participants' experiences echoed throughout the stories.
Conversations within communities and families
A strong theme emerged within the participants' stories of the wider impact of HIV on communities, which ultimately had a huge impact on how they made sense of their own diagnosis.
Angelina reflects on the early days of HIV and the multiple deaths within communities, which created internal conflict:
‘There was a lot of fear both directed at and from us people living with HIV. Watching my own brother getting ill and dying in front of me was really challenging. Because I could see my own life panning out ahead of me. We lost a lot of friends and colleagues along the way. I remember a time when there were funerals weekly, and sometimes you had to choose which one to go to. There were that many.’
Angelina, 2023: 24
Memory also shares the impact of HIV in Zimbabwe and the secrecy that prevailed:
‘Back in Zimbabwe, in the late 90s we lost 5 close family members to AIDS in a space of one year. We also lost a number of work colleagues. It was a difficult time, lots of people dying yet no one spoke about the actual cause of death. They would say someone had died of malaria or diabetes – I guess the more acceptable causes of death.’
Memory, 2023: 42
Memory goes on to share the impact of her son finding out about her diagnosis:
‘Finding out that my son had known about my HIV status without me telling him was heart breaking. I had planned to find the right time after his A levels to tell him, but unfortunately the internet was faster than me. He had no problem with my status but was pissed off about the way he found out.’
Memory, 2023: 45
Blame, shame and misunderstanding were also prevalent within Rebecca's story, alongside the comfort she was able to gain from the community:
‘My husband constantly blamed me for “bringing this thing into our home!” My saving grace was that I was referred to peer support almost immediately after my diagnosis and was able to access the weekly groups they held at Positively Women. It was the only space I felt I could have a few hours of peace …’
Rebecca, 2003: 54
Bryan articulates the sense of secrecy within African communities that leads to people not feeling open to talk about their status and consequently being unable to seek support:
‘I've got a number of relatives whom I have found out are positive, not through them telling me but through whispers.’
Bryan, 2023: 94
Within his story Bryan explores ways to help prevent this within the African community:
‘Just speaking about HIV more often, but more openly, which is difficult, or creating a space where it was safe to speak.’
Bryan, 2023: 94
Community and working within communities is a powerful theme in the book as participants have shared their unique experiences of what it means to be part of the HIV community.
Key features within the book
The book, Our Stories Told By Us: Celebrating the African Contribution to the UK HIV Response (Namiba et al, 2023) was published last year. There are a number of key features within the book that help to enhance the reader's knowledge of the issues that people living with HIV experience: poems, artwork, wish lists and postcards.
Poems
As the steering group, the five African women engaged in a series of creative workshops and collectively wrote a series of poems which are used within the book. They symbolise some of the key themes that emerged from the steering group as a result of undertaking this project. One of the poems is presented in Box 2.
Box 2.A poem from the book Our Stories Told By UsIf you need meIf you need me, I will bethe family you choose.If you need me, tell me.Talk to me.I may not have all the answers,but I am ready to listen.If you need me, I will beyour sounding-board.Don't hesitate to call!Sharing is caring after all.If you need me, I'll be there.Any time of the day,morning noon or night.Just pick up the phone and WhatsApp me.(My phone is permanently on silent!)If you need me, I will give youcuddles and happiness,hold your hand and be there for you.I will not judge you for who you are.You will always be my friend.If you need me,I'll be there. (Like that very famous Diana Ross song!)I'll be there. I'll be there.
Artwork
The artwork of the book has been carefully considered, with every image, and use of fabric and colour holding significance. Central to the book's design is a tree, an oasis of peace that symbolises strength, growth, stability, and standing tall against all weathers. This is a representation of how we stand together against the discrimination and stigma of living with HIV. Each page in the book has an African pattern that connects to the next page through to the end of the book.
Wish lists
Participants were asked to consider what their wishes would be with regard to HIV care. Within the book, these are collated into the themes of stigma, religion, quality of life for people living with HIV, treatment access and prevention and support, health inequalities, empowerment, funding, research and the greater involvement of people living with HIV.
Postcards
Participants were asked to write a letter to either their future or past selves based on their experiences today of living with HIV. These letters were then edited and presented within the book as postcards for the reader. The content in the postcards varies but they contain common themes of resilience, hope and humour.
Conclusion
Each story is a beautiful testimony of the power of individual agency and the collective action of communities. By gathering these first-hand accounts of African migrants in the UK, the authors have brought to light an important moment in the history of the HIV pandemic.
The book is a historical representation of a specific community and captures a unique experience so, therefore by its nature, cannot be easily replicated. However, this process and collaboration could be used as a model for hearing different stories, such as mothers who were diagnosed in pregnancy, and children who were born with HIV, to help to continue to reduce health inequalities in other areas.
The book provides an opportunity to create awareness of the issues the African community faces when dealing and living with HIV. The current narrative that is portrayed for this community is that of victims who lack agency. The book aims to change this narrative by showcasing the leadership within the African community and increasing the visibility of the community's contribution to ending the HIV epidemic. The book will amplify unheard voices and, in doing so, change the narrative from that of victims to collaborators. The aim is to reduce stigma and unconscious bias within the reader. As Nelson Mandela said:‘It always seems impossible until it is done.’
To order a copy of the book or to learn more about the project, please visit: ourstoriestoldbyus.com
KEY POINTS
- African migrant communities in the UK are one of the groups most affected by HIV and much of the support comes from within the group itself
- A group of women migrants from Africa to the UK were inspired to collect first-hand accounts of people from the same backgrounds who were living with HIV, exploring themes of stigma, peer support, resilience and conversations with communities and families
- The result of the project is a book called Our Stories Told By Us: Celebrating the African Contribution to the UK HIV Response
CPD reflective questions
- After reading the article, consider how you would inform your patients about this resource
- Consider three things you will do differently after reading the article
- Consider writing a postcard to your future self: what would you include with regards to your work with the African community?