Gulraj Grewal grew up in Kenya then went on to complete university at University College London (UCL). She completed an undergraduate degree in Immunology and Infection and then pursued an MSc in Global Health and Development, where she discovered her love of qualitative research. She undertook a qualitative project for her Masters and is currently continuing that line of work in Nairobi.
Every culture shares stories – about their past, the present and what the future may hold – allowing people to learn about themselves and develop as a community. Culture gives us a place in the world, creating a lens through which we view everything. This lens can be shattered by illness, particularly a lifelong illness with stigma attached to it, such as HIV (Human Immunodeficiency Virus). My Masters project involved researching influences on female narratives about living with HIV and transformative points. A transformative point is when a life event changes an individual’s perspective and experiences – this includes how an individual views themselves, their personal beliefs and their behaviour. Below, I have outlined the key finding from my research: social support and narratives have the incredible ability to heal individuals and communities.
Narratives are different from stories, in that they enable individuals to elucidate the order and importance of events, so that insights into the mind-set and thought process may occur. Therapies such as Narrative Exposure Therapy (NET) rely on the repeated recounting of an individual’s narratives to deal with trauma. It is thought that this repetition exposes people to trauma cues within the narrative, thereby enclosing the experience as an autobiography and allowing the trauma to be processed. In a similar fashion, illness narratives are important for the process of healing and coping with a diagnosis. Besides being helpful for the individual, sharing narratives can create change in the community by creating empathy and reducing stigma.
The power of sharing narratives in a group setting has been demonstrated across various interventions tackling a variety of issues. Plays involving people living with and without HIV have been done in Malawi, resulting in people changing long-held opinions about HIV positive individuals. Simply interacting with people living with HIV showed people how much they had in common and how the illness did not have a marked effect on people once they were on medication. Another highly successful intervention involving social support and narratives is alcoholics anonymous (AA). AA allows people to share their narratives and provides a sponsor, who is always on-hand to mentor new members towards the right path. It is worth noting that AA also uses a system based on belief in a higher power to allow a transformative point to occur, much like some people find new or renewed faith upon diagnosis with HIV.
New or newly found belief in God or spirituality can give Women Living with HIV/AIDS (WLWHA) a sense that everything happens for a reason and there is a plan for them. However, HIV touches on issues that are taboo for some religions, such as homosexuality, promiscuity and sexuality in general. As such, religious institutions can sometimes distance themselves from WLWHA, removing the support and belief that are crucial for enabling a healthy and fulfilled life. Support groups consisting of WLWHA are therefore essential for providing a safe space where women feel supported and can express themselves.
Highlighting the importance of group support and sharing narratives with other people is the finding that it is time after engagement with social support and not time after diagnosis that allows a transformative point to occur. Studies have shown that increased support and quality of life leads to increased adherence to Anti-Retroviral Therapy (ART), which can be critical in curbing the spread of HIV. If ART is taken every day it is impossible to spread HIV, thereby enabling HIV positive people to maintain a normal life, including reaching a normal lifespan. For women, this means that they can have children, which can have quite an effect.
Women are almost expected to want children, with societal norms enforcing the idea of women without children seeming somehow incomplete. For WLWHA children create multiple effects. Children can present a purpose for the present, with women adhering to medication and adopting a healthier lifestyle so that they can be present for their child’s upbringing. Children can also present hope for the future – at one point WLWHA did not think they would be able to have children, and with the strong attachment of children to gender roles this could have devastating effects on women who wanted to be mothers. Therefore, having the option of birthing HIV negative, healthy children can provide women with a sense of fulfilment. Lastly, children can also create stress. Women begin to fear the fate of their children should they succumb to the virus – who will raise them? How will society treat them? Women shoulder the stigma and shame associated with being HIV positive, but they never want their children to have to carry that burden too.
Narratives not only allow WLWHA to heal, they allow women to have a voice and educate the public on various issues associated with illness, such as stigma and patriarchal norms. Narratives are a much more memorable form of disseminating information than conventional methods of teaching. Having women living with HIV disseminate the information removes some of the mystery shrouding the illness, which is key to demonstrating how anyone can contract HIV. This can lead to a collective transformative point, as communities change their views on WLWHA.
In conclusion, it is amazing how far the pharmaceutical industry has come in developing therapies for HIV positive people and how far we have yet to go in changing our perceptions. Learning about HIV in a classroom is completely disassociated from the realities of living with the disease and the struggles HIV positive people, especially women, face. Poverty, abuse and patriarchal cultures contribute to the burden of living with HIV, leaving women with little other than their voice and story. Simply having someone listen to you can be a comfort in a setting where no one listens or seems to care about your struggles. Having an audience for the narratives of women who live with HIV has shown to provide a sense of relief and joy. Simply put: sharing narratives and being heard is a healing process for women living with HIV.