Breaking the silence on illness

Can we express what illness is like?

Philosopher Havi Carel, influenced by the subject-object problem, argues that serious illness poses a challenge in verbal expression due to its complex nature. This article explores the ineffability of illness, delving into the hurdles in articulating experiences seen as too traumatic or isolating. Carel challenges the societal norm of sharing, proposing a 'right to silence.' Examining the varying degrees of ineffability and isolating nature of illness, Carel advocates for the inclusion of patient views as valuable sources of information to enhance our understanding of illness, instead of viewing patients as merely objects to be studied.


Serious illness is demanding. It is hard to be ill, feel pain and fatigue, worry about one’s future, and dread further decline and sometimes dying. This subjective experience is core to being ill and requires attention, care, and understanding. When we are ill, we feel ill and this feeling, and its myriad ways, has been the focus of my research for many years. I believe that we ought to take the experience of illness as a serious topic of study and ought to make its significance a basic premise in planning and providing healthcare.

Like most existentially tough experiences, the experience of illness is difficult to speak about. Speaking of dashed hopes, a dreaded future, and present pain makes them more real, and hence more painful. In these situations, ill persons may prefer to share little or even to remain silent.


Sometimes illness feels impossible to describe and talk about.


However, we are often admonished to speak about what ails us, to articulate our painful thoughts and experiences, to ‘let it out’, ‘unburden ourselves’, and ‘share’. It is a home truth that speaking about painful things can be therapeutic, healthy, good for us, relieving us of the burden of unshared fears and worries.

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But is speaking difficult emotions and thoughts necessarily beneficial? Philosophers Dan Degerman and Francesca Bellazzi think not and defend a ‘right to silence’. But even if I were convinced of the benefits of speaking, and did want to describe my experiences, a further problem arises: sometimes illness feels impossible to describe and talk about. We can call this the ‘ineffability of illness’.

‘Ineffable’ could mean something that cannot be described at all. Or something that can be described but only in ways that fall short of a full account. Or something that can be described but only in its superficial aspects. And there may be further meanings. It is often presumed that illness experiences are either deeply ineffable or contain elements that are incommunicable.

There are several reasons for this claim. First, some argue that illness experiences are too difficult or traumatic to be articulated in a coherent way; that like all traumatic experiences, illness is too all-consuming and saddening, to the point that talking about it becomes impossible. We can call this reason the unspeakable trauma reason.

A second reason for the ineffability of illness is that the bodily and mental experiences of illness are too extreme to be shareable, lying outside the familiar spectrum of embodied experience. Take the experience of waking up in intensive care after major surgery; or of hearing voices that only exist inside your head; or of giving birth. It may be that some experiences are so wildly different to most people’s everyday life, and so extreme in their transgressive and uncanny nature, that they simply lie beyond our shared language and concepts. We can call this the extreme experience reason.


If an illness forces someone to live in isolation due to lowered immunity, or if they suffer a psychotic episode in which they exist in their own idiosyncratic reality, or if someone spends a very long time bedridden in hospital, their experiences will be so radically different and cut off from everyday experience.


A third reason is that illness experiences isolate the ill person in ways that render communication about illness impossible. For example, if an illness forces someone to live in isolation due to lowered immunity, or if they suffer a psychotic episode in which they exist in their own idiosyncratic reality, or if someone spends a very long time bedridden in hospital, their experiences will be so radically different and cut off from everyday experience that this isolation will make their experiences virtually incommunicable. We can call this the isolation reason.

If these claims are correct, we could argue that they amount to what we could call a hermeneutical (interpretative) predicament: a situation in which our known and accepted interpretative resources cannot interpret and articulate experiences that constitute a radical departure from the dominant (common, accepted) view. What happens is that the dominant interpretative scheme – the way in which we understand ourselves, those around us, our interactions with others, etc. – lacks the concepts and ideas needed to understand such experiences.

This hermeneutical predicament could have two consequences: first, some people may end up unable to understand their own experiences – these experiences are simply too ‘far out’ for our existing concepts and language. And what cannot be understood, cannot be communicated to others. I’ll call this total ineffability. Second, those experiencing serious bodily and mental illness may be unable to share their experiences – they cannot find the words to fully describe their experience, because such words are not readily available or not available at all. I’ll call this partial ineffability. These are two broad types of ineffability (there may be more sub-types), the first being more global and damaging than the second. But both should worry us. I’ll come back to these two types of ineffability shortly.

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Three features of ineffability

To assess whether illness experiences are in fact ineffable, and to what degree, we need to first work out what ineffability is. I propose three initial features, although there may be more. These three features are rooted in the three reasons for the ineffability of illness described above. Importantly, each feature is an axis along which differing degrees of it manifest.

I propose, as a first stab at characterising the ineffability of illness, that it can be:

(1) full (or partial) – stemming from the unspeakable trauma reason.

(2) unique (or not) to embodied experiences – stemming from the extreme experience reason.

(3) hermetically isolating (or not) – stemming from the isolation reason


Let me say more about each.

(1)   Full or partial ineffability: we can say that an experience is ineffable in one of two ways: first, if ill persons simply cannot describe it, not even to themselves, the experience is fully ineffable. This option precludes any reflection on the experience. Early childhood trauma occurring at the pre-verbal stage is an example of full ineffability. Freud’s notion of the unconscious is another example. The experience, once lived, is not available to mental scrutiny or recollection and remains unconscious. It may play a significant causal role in one’s mental life and behaviour, but it is not articulable nor is it available to one’s own introspection.

Ineffability could also be partial, and it can be thus in several ways. It may be that one can remember and reflect on an experience, but not be able to explain it to others tout court. It may be that one can explain it to those who are closest to them – e.g., someone with second person experience of the illness, or someone who also suffers from that or a similar illness – but not to those further away. And it may be that the experience is in principle articulable, but far outside the range of familiar experiences and is hence not easily communicable, nor easily received by others (e.g., there are no serious depictions of it in popular culture, it is seen as embarrassing and hence not spoken about, or it is a taboo topic). The experience of many illness symptoms, such as having a stoma bag or incontinence, may come under this category. The twin risks of trivialisation (Spencer and Carel 2021) on the one hand, and disgust and isolation on the other, cut deep into this sense of ineffability (Carel 2018).


(2)   Unique to embodied experience: ineffability is particularly pertinent to embodied experiences. Because illness experiences come close to, and may even touch on, the boundaries and limits of human experience, I have described such experiences as ‘limit cases’ of human life (Carel 2021). Taking one’s respiratory capacity close to zero, as happens in respiratory failure, requires a new word, since our familiar term ‘breathlessness’ is not enough. Being in the state of ‘locked-in syndrome’ in which one is entirely paralysed is another example. Extreme bodily limitation takes us as close as possible to death, and eventually reaches it. End of life liminal consciousness is another such example. Such experiences are unique in virtue of threatening our very existence; they affect our subjectivity and perception, rather than being experiences to be had within a familiar experiential framework (Carel 2016).

In addition, such experiences are inescapable; and they are foisted upon the ill person. For these reasons I think there are strong grounds to claim that experiences of illness are unique in their total embodied nature, which makes them intensely private and hence at least partially ineffable. There may be a stronger case of full ineffability about certain very extreme bodily experiences, for example, near-death experiences and traumatic injuries. In my book Illness I tried to convey my experience of serious progressive respiratory illness against this backdrop. I suggested that illness experiences are unique in virtue of affecting the foundations of our existence, namely, our embodied life and how we perceive and experience the world.


(3)   The isolating nature of the ineffability. It may be that the ineffability is total and hence hermetically isolates the person. The previous example of a person in a state of liminal consciousness, or someone with locked-in syndrome cut off from all communications, are examples of being hermetically isolated. Such ineffability is total because no communication is possible. Importantly, ill persons could become isolated not only due to physical symptoms but also because they are ignored or abandoned due to prejudices against them (which Ian James Kidd calls pathophobia). These are cases in which the ineffability is driven by a degree of isolation but is incomplete. For example, cases where people speak but are unfairly ignored or taken to be unreliable (in what Miranda Fricker calls ‘epistemically unjust’ ways).

With this outline in place, we can now return to our question: is illness ineffable? We can now examine the precise content of claims about illness as ineffable, using the three features. This requires a detailed working out of specific cases, which will need more space than I have here.


I suggest that illness experiences are broadly understandable to those who are ill, but are highly limited in their communicability due to a blend of stigma and pathophobia about illness.


But I do want to offer an initial answer to the question. Recall our two types of ineffability: total ineffability (being unable to understand one’s experiences and hence also being unable to communicate them) and partial ineffability (being unable to share one’s experiences). I think that it is possible to make the case for the stronger claim about total ineffability in cases of extreme illness, but that we should beware the strong claim being used too broadly. It is much more common and, in some ways, more deleterious to ill persons, to experience partial ineffability. In other words, I suggest that illness experiences are broadly understandable to those who are ill, but are highly limited in their communicability due to a blend of stigma and pathophobia about illness (Kidd 2019), bright-siding within popular culture (Ehrenreich), and a dearth of interpretative resources pertaining to bodily failure, limitation, and death (Carel 2021).

I want to emphasise the potential productive work that this option opens. I think it is possible – and important – to develop new conceptual and interpretative resources to understand divergent experiences of the sort illness (and disability) brings. Current conversations about neurodiversity (which is not an illness but a useful analogous case), for example, are doing exactly that (Chapman 2023). Whilst this does not guarantee that such resources will be widely shareable, articulation of these experiences within communities of ill persons is already a significant step, promoting their self-understanding, identity formation, and confidence, even if the experiences are not shareable more widely. Moreover, we should advocate for, and continue to create, tools for combating total ineffability and for increasing our ability to overcome partial ineffability, many of which are already at our disposal.

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I’ll end with two such examples. I previously developed a patient toolkit, aiming to enable ill persons to reflect on and articulate their illness experiences using tools taken from phenomenology, such as bracketing the natural attitude, thematising illness, and being-in-the-world (Carel 2012). The second example is a current research project, EPIC (epistemic injustice in health care), designed to identify communicative failures and lack of uptake of patient views within health care. It is my fervent hope that EPIC will contribute to improving our ways of talking about, articulating, and rendering intelligible the burdensome experience of illness.

I close with the thought I opened with: patients are people, with feelings, thoughts and experiences like any other people. We need to maintain focus on this fact within medicine, which runs the risk of marginalising this fact whilst focusing on the objective side (treating the diseased cells or organ) with the useful tools of medical science. We can hold on to both within medicine, thus truly humanising it, and remembering its purpose. In the words of the 1964 modern physician’s oath: “I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being.”

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