Using stories to break the cycle of stigma and silence

Tim Shakespeare considers how sharing stories might help to break the silence around taboo health concerns.

We’ve been conditioned by societal norms to keep certain topics – often involving our health and wellbeing – wrapped up inside ourselves. But failing to confront issues such as how our bodies change with age, our mental and emotional health, and our sexual health, impacts the health of millions of people. Through missed opportunities for support and treatment, our collective expectations of what is and isn’t acceptable to talk about can have fundamental consequences for wellbeing.

When certain issues are stigmatised, it’s easier to brush them under the carpet, perpetuating a cycle of shame and self-blame so people don’t get the support they need or deserve. For example, a hard-hitting obesity campaign from Cancer Research UK came under criticism for being stigmatising and counterproductive. A group of scientists and health professionals pointed out that weight stigma actively discourages people from engaging in behaviours that promote health.

Stigma can also lead to health systems and services that don’t properly serve important health conditions. People are less likely to work on taboo conditions, instead choosing areas that are seen as more prestigious, better funded or more commercially promising, so the availability of effective products and services is limited. Furthermore, the people experiencing these issues can feel isolated and unsupported, and in turn, are less likely to seek help. When people do reach out for help, stigmatising attitudes amongst some healthcare professionals can mean that patients don’t get support and are then less likely to seek help in the future.

‘I just had an appointment with a new health care provider where they asked me about past abuse. I’ve never been asked in a clinical setting before, and it just felt really hard to “make it real” in a way. I just never thought my abuse ‘counted’ because it was always with someone I thought I loved and could trust.’ Anonymous Contributor to My Health – My Body

There can be a vicious cycle where a lack of shared stories reinforces stigma and perpetuates the silence around these important issues. But hearing that other people have had similar experiences to us (especially people we can relate to or have respect for) can provide significant relief and improve our health. Studies have tested these approaches for a wide range of issues such as abortion, PTSD and HIV. The power may lie not only in hearing the stories of others, but also in the opportunity to express our own story without judgement.

“I had an abortion when I was 30. At the time I had friends and co-workers who were pregnant and happy, which made the situation even harder – I couldn’t tell them and I felt even more alone. Over the years I’ve spoken to more people about it and discovered that I know lots of people who have had abortions too – I wish I had known that at the time, then I wouldn’t have struggled on my own.” Anonymous Contributor to My Health – My Body

Could starting conversations about these health taboos be an important first step towards better understanding them, and creating relevant, impactful ways to support those experiencing them? If these subjects remain hidden, how can we develop effective support systems to address them? We’re currently leading a public engagement programme funded by Wellcome, which focuses on increasing the visibility of and engagement with taboo health issues. We have worked with Liminal Space to create a platform where people can share their stories of taboo health issues in written or spoken form. We hope that the site can demonstrate that there is power in telling our story, there is value in hearing about others’ experiences, and there is a role we can all play in supporting and empowering each other. The stories submitted will always be anonymous, and people can choose for their story to be shared with other visitors or to keep it private.

Are there parts of your life story that, despite being intimately important to you, have been difficult to share with those around you? To hear the taboo experiences that have already been shared, or to share your own story and help shine a light on the aspects of health that have been hidden for too long, visit myhealth-mybody.co.uk/. The platform is open for submissions until 31 October 2021.

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Tim Shakespeare is Research & Innovation Design Manager for Zinc. Zinc is working on scalable ways to solve important societal challenges. The Taboos programme and My Health My Body website are funded by a Public Engagement Award from the Wellcome Trust.

Photo by Kristina Flour on Unsplash

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