What happens when doctors don’t have all the answers?

Katharine Cheston is a PhD researcher at the Institute for Medical Humanities, Durham University. Her research, funded by the Wellcome Trust, focuses on experiences of illness that can be considered to be ‘medically unexplained’. She has previously volunteered for charities and organisations working with people living with complex, poorly-understood medical conditions. Katharine is on Twitter (@kacheston) and can be contacted via email: katharine.a.cheston@durham.ac.uk.

If we become severely unwell, we expect to be supported and helped to recover our health.

We expect that doctors will listen to our symptoms, and that they will take us seriously. We might expect to have medical tests carried out – to feel that ‘sharp scratch’, or to lie in an MRI scanner – and we anticipate that the results of these tests will reveal a diagnosis and a treatment plan. We might expect to be handed a prescription for medication that will make us feel more like ourselves. Throughout all of this, we expect to be treated with dignity, and with respect, like any other person in pain.

Sadly, as many of us know, reality can differ greatly from expectation.

Not all pains come with a prescription; medical testing often fails to reveal answers; and a diagnosis can feel like an invalidation, not an explanation. Illness can persist – for years, decades, even indefinitely – without care, support, or respect from those who we expected would help us.

For many of us, interactions with medical professionals can be a source of trauma rather than treatment. We can be left feeling disbelieved, dismissed, and alone.

My name is Katharine and I’m conducting PhD research into experiences of illness which are complex and poorly understood.

My PhD is inspired by my own lived experience, as well as by my voluntary work with charities and patient groups. Through my PhD, I want to understand what it means to live with an illness which can be described by mainstream medicine, and in the clinical literature, as ‘medically unexplained’. Research suggests that people who live with complex, poorly-understood medical conditions can experience social as well as somatic (bodily) suffering; stigmatisation and invalidation could be said to add insult to injury. I am particularly interested in understanding how women with these conditions experience stigma and shame as a result of their illnesses (and other people’s reactions to these illnesses). I want to listen to these stories – to understand, analyse and bring awareness to these experiences – so that this shame and stigma might one day be reduced for these communities.

I am studying accounts women themselves have written and published about their own experiences…

Such as Porochista Khakpour’s Sick and Anna Lyndsey’s Girl in the Dark, and I will also interview women who live with these conditions so that I can get a more complete picture of the problems they face. Combining the study of published autobiographies with the analysis of interview testimony in this way will, I believe, tell me a lot about how women with these conditions experience stigma and shame, how these experiences feel, and what the causes of this stigma and shame might be.

If you would be interested in sharing your experiences with me in an interview as part of my project, you can express an interest through completing this survey. More information about my research is available on my website, and I will post research updates on my blog as my project progresses.