‘We can’t be perfect all the time’: Life with HIV before antiretrovirals: A narrative analysis of early published stories by women with HIV in the United Kingdom

Introduction

We live in the era of successful HIV treatment and a growing number of women diagnosed with HIV when they were younger are reaching older age. Yet, the experiences of women like me who were diagnosed in the United Kingdom (UK) before the treatment breakthrough of 1996 are under-addressed and under-recognized. ¹ This could be because effective treatment has partly normalized HIV, and to some extent, silenced talk of it ² must also be attributed to the invisibility of women in the UK’s HIV response. ³ Key findings in the 2018 report ‘Women and HIV: Invisible No Longer’ suggest that research, policies, and services are not serving women living with HIV. The report recommends that greater focus is given to women and knowledge gaps are addressed. ³ This must include the diversity of different women’s experiences so that treatment, care and support services are responsive to women’s priorities.

Documented accounts by women diagnosed with HIV in the 1980s and 90s provide immediate access to events as experienced 30 years ago. This study offers a contextual reading of a collection of stories from this period, to understand both what the women experienced and how they narrated a stigmatized and silenced condition. Positively Women: Living with AIDS, published in 1992, is a collection of personal experience stories of living with HIV written and spoken by 12 UK-based women from Positively Women, a voluntary support organization based in London. ⁴

There were few women diagnosed with HIV in the UK in the late 1980s and early 1990s, but the pattern was changing. By December 1992, there were 19,065 reports of HIV in the UK, 12.4% of these in women. ⁵ The early HIV epidemic devastated the gay community, which felt both the moral backlash of Margaret Thatcher’s social conservatism and the rollback of public services under her neoliberal project. HIV was attributed to behaviour that fell outside of ‘family values’ – homosexuality, promiscuity, drug use and sex work. The dominant narrative was fear, blame and an inevitable death. Gay activists had to set up voluntary education, support and healthcare services to fill the gap left by Government’s reluctance to fund statutory services. By 1989, there were over 30 national AIDS organizations. ⁶ Although these charities included services for women, they were largely organized around the priorities of gay men. AIDS was not perceived as being a woman’s disease and subsequently a woman-centred response was weak and fragmented. ⁷ Despite the gendered dimension of HIV (how gender inequality affects experiences of HIV and the social and political responses to it), the UK feminist movement failed to engage with the issue. ⁸ It was left to small groups of women living with HIV and their feminist allies to recognize and call out HIV as a women’s health issue.

The first women in the UK to mobilize support for other women with HIV were ex or current drug users. In 1987, they started Positively Women, a London-based support service responding to the lack of women-centred support and information. Positively Women drew loosely on principles from alcohol/drug recovery programmes – peer-led and empowerment through testimony – and feminist consciousness raising – sharing experiences to expose gender inequality, build solidarity and agendas for change, or ‘the personal is political’. ⁹ It was to Positively Women that I was first referred when diagnosed in 1990. I remember sitting in a circle in the front room of their office, high above the bustle of Kings Cross, as we took turns to tell our ‘story’.

Soon after my diagnosis, I spoke out publicly. My story felt sought, validated and legitimized. Telling stories from lived experience within the discourse of censoring and silencing is profound and powerful ¹⁰ and can be a therapeutic act of self-care that helps re-shape and re-store a sense of self-shaken by diagnosis, illness or stigma.^11,12 My speaking out was also part of a political process – an act of my own choosing that broke the silence, challenged stigma and reminded people that women got HIV too. HIV narratives have been central to social change as they work to mediate, resist and shift social realities, and build solidarity and community.^13,14 As I repeatedly told my ‘story’ – a co-constructed narrative informed by where, why and with whom I was sharing – I was creating a ‘living with HIV’ self, a moral subject that was empowered and transformed by my experience, similar to the arc of the ‘coming out’ story, whereby narrators proclaim their sexuality. ¹³

Methods

In order to make some overarching sense of the stories, the method of narrative analysis was used – an approach that allows for a deep contextual reading, considering social and cultural contexts and the co-constructed and performative aspects of how we make sense of our lives.^15–17 Narratives encourage us to organize thoughts and experiences into a temporal and coherent sequence as the story journeys through a sense-making process to a destination. In doing so, personal narratives may use plotlines and distinct styles, structure and content that belong to specific types of narrative or genres. Since genres are culturally and socially constructed ways of telling a story, they inform how we give meaning to our lives. ¹⁸ Genres relevant to HIV stories include, but are not limited to, Plummer’s transformative ‘coming out’ genre ¹³ and Frank’s illness genre ¹¹ with its different narrative paths of quest (finding meaning), recovery (returning to health) or chaos (no ending).

The analysis used an inductive and reflexive approach to identify narrative patterns, themes and characteristics of types of stories to help answer the question of why the story was told in this way. Having insider knowledge offered unique perspectives and insights with which to address issues relevant to women with HIV. People living with HIV have a long history of setting and reshaping research agendas that translate into needed policy, services and interventions. ¹⁹

There are very few written accounts of women’s personal experiences of living with HIV before 1996.^4,20,21 In order to avoid a comparative analysis by including stories collected by different methods, over different time periods, from women who were affected but not necessarily living with HIV, in other geographical contexts or by editors and researchers with different agendas, one compilation was chosen, Positively Women: Living with AIDS. ⁴ It is the first collection of women’s personal experience stories of living with HIV from this era published in the UK. The editors, Kate Thomson, a woman living with HIV and working at Positively Women, and feminist ally, Sue O’Sullivan, started to compile the stories in 1989, two years before publication. A second edition in 1996 invited those who were still alive to update their story. The book has two main parts: ‘Our Lives, Our Stories’, followed by an informative section on a range of topics. Analysis focused on the first part. Contributors to the personal stories were women who had been service users, volunteers or employees (often all three) at Positively Women. They could use pseudonyms although a few retained their actual names. Without knowing how the narrators may have self-identified, we can partially deduce their demographics from their stories. It would appear that all are cis-gendered. The majority are white British, one is mixed heritage, two are Black African and one is Irish. Two are in their 20s, the remaining in their 30s. Only one woman identifies as a lesbian. The length of time since diagnosis ranges from eight years to one, with the average being four. Five women were unwell with either a diagnosis of AIDS or episodic illness, three of these women died before the second edition was published. Fifty percent describe a history of drug use. Nine out of the 12 women describe having a professional occupation or university degree or coming from a middle-class family. Women could choose to write or be interviewed. It is not mentioned who chose what. The stories vary in length from only four pages to 44. The three women who had been most heavily involved in running the organization had the longest stories. It is not clear how representative these women were of Positively Women as information on service users is unavailable. Confidentiality fears and language barriers may have deterred some women from participating. The demographic impact of the epidemic was also changing in early 1990s and the editors mention that Positively Women was not yet reflecting the growing number of Black African women diagnosed.

Findings

Some of the stories take a life history approach, starting with early experiences, others focus on the period since diagnosis. According to the book’s introduction, the women were asked to ‘go beyond their HIV experiences’ in order to contextualize and humanize HIV. Most of the contributors construct a narrative of evaluation and sense-making with practical advice and reflections on a wide range of topics. The analysis produced three thematic parts: (1) re-evaluation and redemption post-HIV diagnosis; (2) resistance and conflict to living a life boundaried by HIV; and (3) living up to ideals of perfection and positivity.

Discussion

While noting that each woman’s story is singular and unique, collectively their narrative constructions are recognizable forms of sense-making storytelling, for example, the illness^11,12 and ‘coming out’ genres, ¹³ and chime with Corrine Squire’s HIV genre analyses.^22–25 The women commonly used these narrative constructions to find and express resolution and purpose to what often felt inexplicable. However, genres cannot fit all experiences, for example, those that are indescribable or in flux. Suzanne struggles to find meaning as she moves from living with HIV to dying of AIDS, similarly Maya cannot make ‘sense of the senseless’ (p62).

The 12-step recovery programme with its roots in Christian faith ²⁶ and reliance on a ‘Higher Power’, may have contributed to some of the women’s framing of experiences as redemptive. Williamson in her essay on media, meaning and AIDS, attributes ideas of being invisibly chosen for predetermined outcomes to a deep-seated Anglo-Saxon Calvinist theology, whereby redemption from punishment of sin is for those who are chosen. ²⁷ Certainly, Positively Women’s founders were familiar with the 12-step model, and even if religion was absent, these cultural narratives and tropes were available and useful. Squire notes in her work on South African HIV narratives that conversion narratives may still resonate outside of religious context as they offer a way of presenting one’s life as a moral subject in the face of intense stigmatization. ²⁴

Imposing narrative constructions on stories brought together for the specific purpose of making women’s individual lives visible is in itself a contradiction. Homogenizing the stories in Positively Women can also inadvertently replicate the practice in HIV services of defining women with HIV only by their HIV status. As the findings indicate, insistence on categorizing narratives of people living with HIV as ‘HIV stories’ is in contradiction to our lived experience – part of living with HIV occupies a ‘non-HIV’ space requiring a further narrative genre. The expression of an identity, independent of HIV while also determined by it, characterizes the plurality of many HIV narratives. ²³

We have seen that re-claiming a moral identity in resistance to stigma can encourage stories with positive outcomes and by focusing on specific topics such as diagnosis or even HIV itself, can close down the potential for other stories to emerge. Squire as part of her long-term research with people living with HIV used different topics to decentralize HIV and give space for women to talk about other aspects of their lives. ²² Desirée Ciambrone ²⁸ in her narrative research with women in the United States found that women, particularly those who are marginalized, experience other disruptions in their lives that influence the meaning placed on HIV. Her findings resonate with the experiences of the women in Positively Women.

The AIDS narrative has always been one of metaphor where many categories and narratives intersect – us/them, homo/hetero, guilty/innocent and virus/victim. ²⁹ Susan Sontag’s deconstruction of AIDS metaphors notes that illness as a metaphor for mortality, human fragility and vulnerability has always been there; AIDS just fitted right in Sontag. ³⁰ For HIV-positive women, countering the language of fragility and vulnerability is played out in the roles they feel expected to live up to; to avoid being seen as passive victims they must now be heroic. Further binaries of order/chaos, flawed/perfect speak to the tension of appearing to transcend illness by doing everything right while always faced with the stigmatizing visibility of AIDS and, by logical conclusion, having failed. The dichotomy between the virus and the self and how to control both within this new HIV selfhood created an ongoing and unresolved conflict.

The ‘getting it right’ narrative is not dissimilar to the HIV blame narrative in that responsibility for adversity lies with the individual. When moral identities are constructed in the face of adverse events like HIV, we give the event purpose – ‘I am a better person’. This inadvertently implies that if we do not adopt the ‘correct way’ of living that we are morally flawed, we have failed. I would argue that the ‘getting it right’ narrative resonates with a contemporary performative narrative of women living (well) with HIV – heroic, empowered, positive, resilient, healthy, adherent to medication and undetectable – and that this risks excluding women who do not, and cannot, satisfy these norms. In the context of this article, this may include women with lipodystrophy from early drug regimes, women with disabilities and complex health conditions, and women with long-term untreated poor mental health such as post-traumatic stress disorder (PTSD).

Conclusion

These young women’s early narratives respond contextually to a life-threatening and stigmatizing diagnosis and to Positively Women’s call to action. It is storytelling intended for personal empowerment and wider change. The process of sense-making is revealed through the narrative analysis, but it is emerging contradictions and conflicts that tell us more about these woman’s lives. The women worry about the consequences of being defined by HIV and of finding a ‘correct way’ of living with HIV, anxious that getting this wrong will lead to illness and death. This is contextually situated. With no effective treatment available, un-evidenced remedies, denialism and magical thought offered hope. The guiding principles of 12 steps – personal responsibility, self-improvement and self-scrutiny – also influenced women’s moral subjectivities and framing.

These early stories deserve scrutiny. They act as templates, framing and shaping collective narratives,^18,31 which reverberate through to contemporary narratives of living with HIV. The findings draw attention to a small but under researched group of women who survived the epidemic and hint at the impact formative experiences may have on well-being today and the need for tailored support.