In October 2021, the National Institute for Health and Care Excellence (NICE) published their updated clinical guidance for the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS). The very first section of this guideline (1.1.1) instructs clinicians to ‘[b]e aware that ME/CFS […] is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated’. Just a few lines below, the second section (1.1.2) urges clinicians to ‘[r]ecognise that people with ME/CFS may have experienced prejudice and disbelief and could feel stigmatised by people […] who do not understand their illness’. The proximity of these two points – and the prominence of their position at the start of the guidance – prompts the following questions: is stigma a natural consequence of living with a medical condition whose pathophysiology is still under investigation? Moreover, what might the impact(s) of this stigma be?
These questions are also central to my PhD research, which explores experiences of complex, poorly-understood medical conditions: those conditions, like ME/CFS, which cause bodily symptoms in the absence of an accepted biomedical explanation and/or diagnostic biomarker. The literature suggests that women are disproportionately affected by these conditions, so I focus specifically on women’s experiences. My research attests to the fact that the true impact of feeling stigmatised, and of experiencing prejudice and disbelief in these contexts, includes shame – but that this shame tends to remain unspoken and unwritten, as it is in the above-cited NICE guidance. It has long been acknowledged that that complex, poorly-understood illness can provoke a different kind of shame to that associated with other experiences of illness (Ware, 1992). My doctoral research explores accounts of these experiences – expressed in published memoirs, as well as in interview testimony – in order to interrogate this particular kind of shame: its impact, its expression, and how it shapes the lives of those who live with these conditions.
I’ve spent the past six months conducting interviews with women who live with complex, poorly-understood illnesses, asking them about what shame and stigma means to them. It has been an immense privilege to listen to these women’s experiences – experiences which often go unheard, and which require great courage and equally great sacrifice to put into words. I’m still immersed in this qualitative study; the time for sustained theoretical reflection will come later. However, one thing I’ve been particularly struck by is the connection between shame and (self-)blame that has emerged from many interviews – often spoken in hushed, hurried tones, as our conversation is coming to an end.
One interviewee, who we’ll call Fiona – a woman in her forties who lives with CFS – describes being made to feel as if her own illness was her fault. Referring to interactions with healthcare professionals, she admits ‘I am literally treated as if I’ve caused my own illness and I’m responsible for it being ongoing.’ Lacking the objective medical evidence (blood tests, scan results) that might have exonerated her in the minds of her doctors (and perhaps herself), Fiona appears to internalise this sense of blame. Talking about being discharged from a CFS clinic, Fiona reflects:
‘I felt there was almost an implication of, well you’ve not got better, it’s your own fault, it’s your own responsibility. But perhaps… perhaps I’ve put that upon myself. However, you know, it was an experience that made me feel very low’.
Here, blame and self-blame are intertwined so intricately that even Fiona appears unsure – and shame, too, is at the centre. Fiona, like many of the women I’ve interviewed, expresses a deep-seated shame, tinged by feelings of worthlessness.
I’ve been very moved by the experiences I’ve heard in interviews, and I’ve found these expressions of (self-)blame and shame particularly difficult to hear. Many times I’ve wanted to interrupt my interviewees, to reassure them of their blamelessness – to tell them it’s not your fault; you’ve done nothing wrong. Aside from being profoundly unethical, this would have been entirely the wrong approach. This project has taught me that we all need to be able to sit with difficult, discomforting feelings; that we need to accept more readily all that we do not know, and all that we feel powerless to change. As I finish the final few interviews and wrap up my data collection, I look towards the coming year when I will bring the interview transcripts into dialogue with published memoirs in my doctoral thesis. I aim, in the move from listening to writing, to keep this contemplative empathy at the heart of my research: to sit with this sense of shame as I elucidate it, rather than attempting to distance myself from it – or even, so to speak, to explain it away.
Doctoral researcher at the Institute for Medical Humanities, Durham University.