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How the AIDS virus taught them to live: "ordinary" women with extraordinary trajectories

For her thesis project at the National Centre of Competence in Research LIVES, Vanessa Fargnoli is investigating the life course of women who – on the surface – were unlikely HIV candidates. Around thirty interviews have been conducted over the last year. They point to new areas for analysis and show the incredible resilience of the women who took part in this research.

One day they learned that they were carriers of the human immunodeficiency virus (HIV). Most of them did not expect it at all. It was over fifteen years ago, thirty years ago for some. Since then they have been living with their condition; not healthy, not ill. Because since the advent of triple combination therapy, people no longer die of AIDS. Yet people are marked for life – in their daily lives, in their relationships and in terms of their identity – by the consequences of infection. This brutal realisation by women who were not drug users, sex workers or from countries where the pandemic is rife, is the focus of the in-depth interviews conducted by Vanessa Fargnoli, a sociologist from the University of Geneva, since 2014.

"A lot of work has already been done on high-risk groups. This has often taken the form of research into prevention. Yet women I have called "ordinary", although I dislike the word, are under-represented in the studies. They are not a public health priority, as they are not perceived as being potentially 'infectious'," explains the doctoral candidate.

Since the ethics committee of the Geneva University Hospitals (HUG) approved her project in December 2013, followed by the ethics committee of the University Hospital of the Canton of Vaud (CHUV) in May 2014, Vanessa Fargnoli has met with twenty-seven participants aged 34 to 69 from the most diverse backgrounds in terms of education, employment situation and family status. Around half of them have already been seen twice, with each interview lasting almost two hours.

"Each of these women has a different story. One took her husband to court, some wanted to have a child despite everything and some did not; the situations are incredibly varied," states the researcher. One of these women lost her job because of HIV, another decided to leave the disability insurance system and do all she can to get back to work. There are even two cases of "intentional" infection: one participant said that she was attempting a kind of suicide, another that her partner had refused to use protection out of love, in order to "share everything" with her.

"A relationship illness"

However, beyond these differences, a common thread emerges, which Vanessa Fargnoli had not expected to be so clearly present: almost all of these stories contain episodes of violence – physical, sexual or psychological – prior to infection. "It is known that certain traumas cause victims to lose respect for themselves. Are these predispositions the reason why these women did not protect themselves? That is a hypothesis to be tested. At this stage in any case, I already perceive AIDS as a 'relationship illness'," says the sociologist.

All the ingredients from the life course perspective are brought together in this research and will be drawn upon to move forward in the analysis: socio-historic context (new infection, new treatments), critical events (moment of infection, diagnosis, physical symptoms), accumulation of disadvantages and bifurcations (as regards love relationships, family, working life and, of course, health). Applied to AIDS, Vanessa Fargnoli's empirical, inductive approach smoothly combines theoretical paradigms: "lifelong development" (how identity is negotiated and constructed, what resources are mobilised), "linked lives" (particularly perceptible in the case of a disease contracted from others and having an impact on other people close to the sufferer), "agency" (i.e. the strategies used by the individuals concerned, consisting equally of avoidance and compensation).

"Paradoxical illness"

Vanessa Fargnoli believes that AIDS is not only a "relationship illness", but also a "paradoxical illness": "Being HIV-positive is both the worst and best thing that has happened to these women. It has forced them to start respecting themselves, and to take care of themselves; some of them have developed their spirituality enormously to cope with their situation," explains the researcher.

She believes that the paradox also arises from the fact that AIDS has lost its capacity for disruption at biological level, but not at the social level: it is no longer fatal, but is still perceived as dirty. Its victims are simultaneously invisible and stigmatised, normal and vulnerable. In addition, even if the virus is properly controlled, they still suffer enormously from the side effects of treatment – neurological problems, liver problems, metabolism problems. Finally, they are torn between guilt and secrecy on the one hand, and a desire to escape and share their experience on the other.

In addition, although they are themselves victims, many of the women questioned want to protect the man who infected them, or protect their loved ones by hiding or downplaying their condition. They refuse pity, and do not feel entitled to complain. Last but not least, the final paradox: their own children, teenagers or young adults who are all HIV-negative thanks to scientific progress, often do not systematically take the necessary precautions in their intimate relationships.

How to live

Vanessa Fargnoli says that several women were hesitant to share their experiences because they did not feel that they were a good example, seeing as they were getting along reasonably well, and that this did not fit in with the image circulated to encourage prevention. However, their story shows better than certain clichés how the risk affects everyone, and how living with HIV is no easy experience, even today.

"Perhaps there is a selection bias," she says, "but the women I met are all fighters. They discovered that the virus had made them more tolerant, more concerned for others, but also more demanding in their relationships." She cites as an example the experience of a former waitress, whose husband used to beat her with complete impunity and who, after being diagnosed, rebuilt her life via community associations and forged even stronger links with her family.

Vanessa Fargnoli concludes: "Even the woman who contracted AIDS deliberately in an attempt to destroy herself has ultimately succeeded in bringing meaning to her life. They all say that before HIV, their lives were worse. Surprisingly, some did not want the virus to be removed. It taught them how to live, not how to die."