The hermeneutical injustice of ME

Why the right words don’t exist, and how we can find them

Today’s guest post is from Ella Barnard. After studying Philosophy at university, Ella worked in the Armed Forces. She recently left, following a period of recovery from ME.

Ella on a walk, two years into her recovery journey. Photo credit: Ella Barnard.

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A familiar scene

I’m at a physiotherapy appointment, answering routine questions when we get to medical history. ‘And have you had any chronic conditions?’

Oh. Yes, I say, ME after glandular fever and Covid. ‘And what were your symptoms?’

Naively, I haven’t prepared for this. If this were an appointment for ME, I’d have my explanations ready, my words carefully chosen to give a best effort at describing the past few years. But I’m caught off guard. The weight of lived experience presses in, and my brain goes to mush. ‘I was tired all the time. I felt really unwell.’

She looks sceptical. I panic; clearly, ‘tired’ doesn’t cut it. ‘It was fatigue. If I overdid it, I felt ill for days or weeks afterwards.’

Still not working. Maybe I need something more concrete, to frame it somehow in terms of output or functionality.

‘I couldn’t work for a year,’ I say.

I start to blame myself. I can’t believe I’ve fluffed this so badly.

When words fail

The philosopher Miranda Fricker writes about injustices that arise because of the ways in which we acquire knowledge from other people – such as the physio trying to acquire knowledge of my medical history. She breaks this down into two parts.

The first is testimonial injustice, when someone’s testimony is not believed. This is a huge issue with ME and deserves considerable attention. It was probably part of the picture that day in the physio’s office; maybe with my stumbling words, I just didn’t seem credible.

But that definitely wasn’t the whole story. Part of the problem was that the confusion was actually happening in my own head, as I struggled to explain symptoms that had dominated years of my life. It was more complicated than just not being believed.

Fricker calls this second issue hermeneutical injustice – when someone is unable to understand or express an important aspect of their own experience because there is a gap in the shared tools of social interpretation. More simply, it means lacking the concepts to make sense of your own reality.

It happened then in the physio’s room, but actually it had been happening for years. For me, one of the hardest parts of living with ME was the absence of a clear framework for describing and understanding it. The way I had once made sense of my body no longer applied. Before I had ME, fatigue was something that disappeared after a good night’s sleep. Sickness was something that passed with paracetamol and a few days of rest. Suddenly, those things weren’t true any more, and I had no reference points for what I was experiencing.

Meanwhile, the physio was interpreting my condition through the lens I had once used myself, while I was now in another world. The words I reached for didn’t work, and the ones that might have worked didn’t exist.

Hit twice over

The cruel irony of ME is that the words you use become especially important. With no definitive blood test or biomarker, diagnosis, monitoring, and treatment often depend entirely on a patient’s ability to describe their symptoms. If there were a test for ME, doctors could rely on objective data instead of patient testimony – but there isn’t. Patients are placed in a very difficult position: accessing care relies on their ability to describe an illness that resists description.

Compounding this challenge is the fact that just when patients most need to advocate for themselves, ME reduces their ability to do so. The very symptoms that often define the illness – ‘brain fog’, cognitive dysfunction, and memory issues – directly impair patients’ ability to think clearly, recall details, and find the right words. For very severe patients, the situation is even harder, as they may not be able to speak or communicate at all. In these instances, the responsibility for articulation often falls to carers or loved ones, shifting rather than resolving the burden of communication.

Changing the tools of interpretation

The good news is that our tools of communication can improve. Fricker gives the example of women in the 1970s sharing unsettling experiences – a catcall here, an inappropriate comment there – without a framework to understand why these moments felt so uncomfortable. Then the concept of ‘harassment’ gained traction. Language caught up, and with it came social understanding and the momentum for meaningful change.

Fricker emphasises that overcoming this injustice is not just about listening more carefully, but about changing the systems that allow these misunderstandings to persist. In the context of ME, we must recognise that the limitations of our current descriptive tools are a direct effect of the history of medical ignorance and gaslighting that ME patients have suffered. We must work to improve our communication methods so that the experiences of people living with ME can be fully understood.

An NHS #ThereForME

If the NHS is to be #ThereForME, it must take on an active role improving the tools of communication, rather than leaving this to patient communities.

This starts with research. The best way to reduce reliance on patient testimony is to establish diagnostic criteria that can be consistently monitored. Without biomarkers or definitive tests, patients are left to rely on their own descriptions of symptoms. But accessing care should not depend on how well they can articulate their experience. Clinicians must also be trained to recognise the limitations of standard medical language when assessing ME, so patients are better understood even when their symptoms are difficult to express.

Furthermore, language is not the only way to communicate experience. Alternative approaches – such as body mapping, creative storytelling, and artistic expression – have been shown to be effective, often better than using words alone. A #ThereForME NHS would embrace these methods, ensuring that patients can communicate in ways other than traditional verbal testimony.

We can also better bridge the gap between the tools of communication that exist within patient communities and the wider medical system. ME patients have often developed their own frameworks. For example, metaphors like the ‘spoon theory’ (which uses spoons as tokens, representing limited energy that must be carefully allocated), or the idea of having a ‘low battery’, help patients articulate the experience of energy limitations. But these tools remain largely in use amongst patient groups, or occasional medical practitioners, rarely translating into mainstream medical discourse. Somehow, I don’t think the physio would have understood if I’d begun talking of spoons. A healthcare system that is truly #ThereForME would take these frameworks seriously, integrating them into consultations, education and research.

If the NHS is to be #ThereForME, it must proactively work with patients to improve how we communicate about a condition that too often defies words.