Katharine Cheston: exploring stigma, shame and illness

Thanks very much for writing in to the British Medical Journal (BMJ) when they published an article arguing that beliefs about MECFS substantially shape the course of the illness and chances of recovery. What prompted you to respond to the article and what informed that response? What was it that got your goat enough to get you writing?

It’s difficult to know whether to respond to these pieces and whether to give them oxygen… But equally it’s so infuriating and insulting that it’s hard not to. I think that for me, because of how they’d mobilised recovery as a concept and how they claim it comes about, I thought that I would write a piece from my own experience because of my privileged position in terms of recovery. I have recovered myself – by pure chance – and that experience has given me insights into recovery and the experience of illness itself compared to those displayed in the article. I thought that my experience was potentially an interesting and useful angle. 

You only get 600 words – but I wanted to write from my personal experience, even though I don’t think that recovery stories in terms of M.E. are particularly helpful. It’s not something that I would speak about with acquaintances for example. ‘Recovery’ is not really how M.E. should be framed – I am very careful with how I frame it. If I have to talk about it (in my academic work and on social media or in any public way) I’m conscious of how recovery stories can be manipulated and how they could be heard in a way that perhaps isn’t how you (as the person telling the story) meant them to be heard.

I felt like that offered an interesting angle and gave me a chance to put a critique. It wasn’t something I did without having thought it through really deeply.

My experience was that I developed M.E. very suddenly and quite severely at the start. I was diagnosed three or four months after a nasty viral infection around my 15th birthday. And then, years later, in 2016 I got another virus. I was at this point working, doing a year abroad, as part of my part-time university degree. I was working very part-time as a volunteer in a French nursery, and the children gave me something horrible, some sort of nasty virus. I had had viruses before, whilst living with M.E., and they had made me more ill.

I was worrying about how to get back home to the UK, and how I’d cope, but instead after the new virus cleared so did my M.E. symptoms. I don’t really understand what happened medically – it was so unexpected. It’s not as if there’s any useful conclusion I could draw: you can’t recommend people who are unwell to go out and catch a virus!

After getting ill with this new virus I experienced two moments of realisation that things had changed. 

The first was as I was going through the door into my bedroom on a Tuesday morning. I had just brushed my teeth and I realised that my throat wasn’t hurting (it had hurt for the entire time that I’d been ill). And I thought ‘That’s really weird’. I sort of dismissed it, but that was the start of not having any symptoms: they just disappeared. 

Some weeks later, I remember being hit again by a realisation that was even more significant: if this is recovery, then I’ve done nothing to cause this. I’ve done nothing to bring this about. So NONE of this was my fault. I realised that I’d not only not done something to ‘get myself well’ but I’d also not made myself ill in the first place. It wasn’t my fault! I had no idea that I’d been carrying that guilt and self-blame for seven years. You don’t realise it’s so insidious and that it has shaped how you feel about yourself in ways that you don’t even realise. It is really shocking.

Please can you describe your field of study in general and what your own specific interests and motivation are for the research you are doing.

I completed my PhD in the medical humanities. My academic background is in literary studies. I did an undergraduate degree in English and French, and then I did a very ‘straight-laced’ (not at all inter-disciplinary) literary studies masters. 

In September 2016 I organised a Millions Missing demonstration in Bristol – which was one of over twenty demonstrations worldwide, happening simultaneously on the same day. We displayed people’s shoes, symbolising their absence from their own lives, and we had a lot of people turn up on the day. From the messages on the shoes and discussions that I was having with people, I became really aware that people were suffering as I had also suffered. Not just because of the physical symptoms, but also because of the stigma and the way that people were treated by the media, by their friends and family and their doctors. I was struck by the way that this was really adding to this burden of suffering. 

There is a layering of suffering:

• the symptoms
• the secondary losses and anything else associated with chronic illness
• then there are further layers that are intangible and understudied and unappreciated: this additional burden of suffering that people who live with these so-called ‘medically unexplained’ illnesses are forced to experience.

That helped me realise this was what I wanted to do in my PhD. I didn’t really want to do a PhD for itself – my Dad had warned me about the work involved and described it as ‘time you’ll never get back’ – but I really wanted to explore that and I thought it was important. 

How I chose to do that, with my literary studies background, was to look at memoirs. There were some fascinating examples of memoirs exploring this concept of medically unexplained illness. Alongside looking at so-called ‘medically unexplained’ illness in memoirs I also conducted interviews. I had extra training to do the social studies aspect of that research, and I also wanted to look at medically unexplained illness as a concept and how that concept had been constructed. 

Essentially, I wanted to look at why is it that people are suffering in this way? Why is it that there is this additional layering of suffering? Is it to do with how researchers and the media and lay people are talking about a so-called medically unexplained illness?

I also wanted to look at what that suffering looks like. I was especially interested in looking at that through the lenses of shaming and stigmatisation. At the Millions Missing demonstration, it had really hit me that stigma was such a key thing there. Shame is often thought of as the emotional response to stigma. Shame has been the subject of a lot of academic interest and it’s a really interesting concept to explore – that is why I chose this focus and approach. I finished my PhD last year and the outputs that I had produced mainly looked at the experience and the impact on the people that I was interviewing and the memoirs that I was reading. But for example, I was looking at the experience of stigma and I’ve been able to do that, but I hadn’t been able to look at the of causes of stigma in as much detail as I wanted to.

So, after completing my PhD, I applied for a fellowship from the Foundation for the Sociology of Health and Illness. I was fortunate to receive funding and I’m using that to further examine how this stigma is crafted and constructed. Stigma is often perceived as an inevitable facet of an experience like illness, but what I’m hoping to do this year is to show how health research (and the outputs within health research and by clinician researchers) have created the stigma and how you can track that stigma through the published literature. 

This is research that you are just beginning, but what are you expecting to learn about some of the ways these shaming and stigmatising attitudes are created? It can be embarrassing to tell people what you’ve got and you worry what their prior knowledge is.

I think that there’s been a lot of attention to the concept of an ‘illness narrative’ that was actually used in the BMJ piece when the authors wrote that ‘Inspiring hope, and changing the illness narrative, is helpful’. What the authors are referring to – in fact, the presumed meaning of the ‘illness narrative’ – is the story that the ill person tells about their experience. It’s often believed that the ‘illness narrative’ can be healing – so if you change the story, you can change your illness. It’s all really problematic. But what I think is deeply ironic about all of this is that no one is looking at the ‘illness narratives’ created by clinicians, by researchers, by politicians, by journalists – because for illnesses like ME, where there are (as yet) no biomarkers, all these ways of theorising and conceptualising the illness are, essentially, storytelling. And these stories shape lives – they shape what treatment you receive for your illness (or, if you receive any treatment at all); they shape how your doctors respond to you; and they shape what your family, friends and strangers believe about your illness. I want to see how the stories that clinicians and researchers have told about illnesses like ME can shame and stigmatise those who live with these diagnoses.

That’s going to add so much to the understanding of how this comes about and how to defend yourself against the attempts to shame ill people. Have you looked into the kind of psychological side of it? Have you looked into what that shaming does to individuals?

That that was a lot of what was covered in my PhD. Obviously my PhD was a qualitative study, but it was really moving to see the data across the varied sources I explored for the thesis of looking at how all these impacted on people. I was referring earlier to my own experience of this insidious self-blame and self-doubt. That also came up in a number of my interviews and was associated with suicidal ideation, this really corrosive impact on self-esteem and self-worth, this feeling of being made to feel as though your illness were your own fault. You’re highly visible, you’re highly exposed because of all these stories that are being told about M.E. So if you tell someone that you have M.E. or you have fibromyalgia, these are sort of stories that they might have heard about these conditions. They might think that it’s not as if you’re saying you have cancer: that’s something that people recognise as serious.

It’s fascinating to see what different people bring to the M.E. community. In terms of the skills that they bring. By staying with the M.E. community, morally, politically, all of that, you’ve mined your experience and expanded the community. The sharing of your experience and knowledge brings a huge amount to people who have no means of doing what you’ve done.

Totally. It’s this feeling that your experience is both hidden and invisible, but simultaneously you are overexposed and made even more visible and misrepresented. It’s just uncomfortable being both visible and invisible. There are some interesting theories of shame around visibility and exposure, but I am also looking at concept of ‘institutional betrayal’, which is from trauma theory in the psychological literature. In particular it’s used amongst researchers exploring the impact of Gulf War syndrome: you go through this deeply traumatic experience of becoming ill and then it’s how the institution responds or fails to respond to you that causes this sense of betrayal and abandonment. I think that’s a really fascinating concept to look at in terms of ME and medically unexplained illness. And for M.E., it’s like a layered betrayal of all these institutions that are failing to respond in a compassionate and appropriate way to that situation. That adds significantly to this burden of suffering. It’s like adding insult to injury in the cruellest way.

What do you think lies behind the urge to shame? Do you have theories, evidence, about this? What is going on there? What’s the benefit to those doing the shaming?

When someone is shamed, especially this chronic form of shame, they want to hide and disappear and they want to make themselves smaller. And that is very useful: if you can shame someone, you can make them go away. I think that it’s an uncomfortable truth that there are illnesses that don’t have explanations or treatments and yet are so severe. It is something that I’ve been really struck by while doing my PhD: just the lack of knowledge around just how ill people can be with these symptoms. I’ve really emphasised that whenever I’ve spoken publicly about this. I recently did a presentation as part of the Royal College of Physicians’ annual conference and it’s something I really tried to hammer home because I think it’s just not known. And I think it’s not known because people don’t want to know. You don’t want to think that this could happen to you or your loved ones because there’s something so frightening about an illness that is not only unexplained but uncertain, untreatable. I think that there is a real wish to make that go away – and shaming is one way to make this happen.

What is it that you have got from really going to the core of it rather than putting it one side? What is it that you’ve got from your studies personally?

It’s been fascinating to see how all of this happened. To be able to trace the development of these narratives about ME, since the late 1980s – and to really illuminate how these interventions caused this situation, and the suffering that I experienced. In many ways I still experience the impact of this. Even though I’m fully recovered (I don’t have any symptoms which is beyond lucky), because I got ill at such a young age, it’s still something that shapes every aspect of my life in many different ways. It has been good to be able to get some distance from that and to see just how this results from failures of individuals, but crucially also, I think, failures of systems, failures of health research processes, failures of institutions, failures of society. This wasn’t my own failure and I can see that really clearly. I knew that logically, but I think it’s been really helpful to see it in black and white. I hope to be able to produce more outputs that will enable other people see that, too.