Affective scaffolding and chronic illness

ABSTRACT

Current attempts to understand unusually high rates of psychiatric illness in complex, chronic illnesses can be guilty of operating within an explanatory framework whereby there are two options. Either (a) that the psychiatric predicaments are secondary to the bodily condition, and (b) that they are primary. In this paper, I draw upon philosophical work on affect, contemporary empirical work, and qualitative first-person patient data to illustrate a much messier reality. I argue that affective experience is generally more complex in such conditions, and that a variety of pre- and post-morbid causal factors dynamically interact such that the resultant psychiatric predicaments do not permit to classification as strictly primary or secondary to the bodily condition. Affective scaffolding, in my view, provides an apt theoretical framework for capturing this nuance.

Keywords:

• Affective scaffolding
• Chronic Illness
• Emotion
• Psychiatry
• Unexplained Illness
• Chronic Fatigue Syndrome
• Long Covid
• Fibromyalgia
• Medicine

1. Introduction

In times of significant upheaval, we are dependent upon resources internal and external to ourselves in order to regulate our affective life. Chronic illness is, or at least can be, profoundly disruptive. It is disruptive physiologically, cognitively, emotionally and existentially. There are many factors at play which contribute to this, many of which relate to one another in complex and dynamic ways. One’s relationship with one’s body can change, one’s sense of self can be eroded, the way one is treated by strangers, friends, family and employers can all change in ways which can be highly isolating. Previously valued ways of keeping oneself happy might need to be abandoned or otherwise compromised.

In this paper, my focus is on affective experience specifically pertaining to a group of chronic conditions which are poorly understood by contemporary Western medical science. Common examples of conditions under this category include post-infectious conditions such as Post-Covid Syndrome (perhaps more prominently known as “Long Covid”).¹² Other key conditions are Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and Fibromyalgia, whose aetiology is ultimately unknown, though viral infection and other shared risk factors have been strongly implicated in extant research (Pedersen et al, 2018; Chandan et al, 2021; Kristiansen et al, 2019). These conditions have extremely heterogeneous and extensive multi-system symptomatology, typically including extreme fatigue, chronic pain and cognitive impairment.

The inability to identify consistent organic bases across the patient population for these conditions often earns them labels like “functional syndrome” or “medically unexplained illness”. Scientific limitations and lack of consensus regarding testing, diagnosis, nosology and treatment for these conditions (Carod-Artal, 2021; Cortes Rivera et al., 2019; Goldenberg, 2009; Wierwille, 2012; Wojcik et al., 2011) creates a common epistemic burden which can have a significant negative impact upon patients, who are often stigmatized, alienated and dismissed as just depressed or anxious (Kingdon et al., 2020; McManimen et al., 2018).

Perhaps at the root of the tensions regarding nosology for these conditions is the fact that they appear to disproportionately impact upon the affective lives of patients. Empirical work suggests higher prevalence of psychiatric disorder compared to controls, and sometimes compared to other similarly debilitating somatic conditions such as breast cancer (Hall et al., 2015; Kleykamp et al., 2021; Loades et al., 2019, 2021).

A strong body of extant research has attempted to explain this. Proposed hypotheses for the high prevalence of psychiatric disorder in these conditions typically fall within one of two categories. On the one hand, the relevant affective features are understood as primary, on which view they are constitutive of the condition itself, and would resolve in tandem with the resolution of the condition. On the other hand, the relevant affective features are understood as secondary, meaning that they are not directly caused by aspects constitutive of the condition in question, but are instead caused by additional factors involved in the illness experience more broadly understood.³ By “relevant affective features”, I here refer to indications of affective change that may contribute toward a diagnosis of a psychiatric disorder. This includes symptoms which may be satisfied on a standardized measure, but also other subtler things which might inform a clinical assessment in which the relevant medical professional can exercise his/her clinical judgment.⁴

Hence, current empirical research is operating within a binary explanatory framework where there are seen to be only two competing hypotheses available to explain the relevant affective features in these conditions. It is the goal of this paper to challenge that explanatory framework and show that affective experience in these conditions is much more complex. Illuminating the dynamic interaction between various causal factors and their effects, I suggest, highlights the need for a framework under which this dynamism can be accommodated.

I will precede as follows. In Section 2, I introduce affective scaffolding to provide the conceptual framework needed to challenge the binary explanatory framework I have identified. In Section 3, I consider some extant work in phenomenological psychopathology to identify a rich notion of the loss of trust. Having identified the relevant notions of trust, I draw upon data from my own qualitative study, the Experiences of Fatigue Questionnaire (hereafter, EFQ) which sought first-person experiences of chronic fatigue from a phenomenological perspective.⁵⁶ This discussion lends support to some existing empirical work highlighting causal factors whose effects are secondary to the bodily condition.

This explanation, however, is insufficient for explaining the relevant affective features commonly observed in the patient population. In Section 4, I look at two core symptoms which are common across the group of chronic illnesses with which I am concerned here: fatigue and “brain fog”. In so doing, I show that there are also important causal factors whose effects are primary.

In Section 5, I consider a third common symptom: post-exertional malaise. Close examination of this symptom, I suggest, shows the need for an explanatory framework which can accommodate more than either primary or secondary effects. I explicate the various different ways that this symptom impacts upon patients’ affective life, both in isolation and in interaction with other causal factors, hence illustrating that the resultant affective features preclude classification as wholly primary or secondary to the bodily impairment.

Moreover, not only do these causal factors interact differently across time, but they also interact differently across the patient population. As well as the severity of symptoms and other features of the illness experience, which are only relevant once one has become ill, I emphasize in Section 6 that pre-morbid features of one’s scaffolding “styles” also shape one’s affective life once one has become ill. I point to our regulatory repertoires to make this point, a concept which is compatible with a qualified notion of resilience.

Ultimately, my analysis points to the conclusion that the dominant binary explanatory framework for understanding the relevant affective features in complex, poorly-understood chronic illness fails to accommodate the complexity of patient experience across time and across the patient population. The affective scaffolding framework is much better-placed to capture this dynamism.

2. Affective scaffolding

Broadly, affective scaffolding refers to processes whereby features of one’s environment are manipulated or used in order to enable, support, enhance or otherwise regulate one’s affective experience. Affective scaffolds are structurally diverse, and a number of rich taxonomies have been proposed which accommodate the role of scaffolds across bodily, interpersonal, material and social and even institutional domains (Coninx & Stephan, 2021; Krueger, 2020). For instance, scaffolds can be found in a person, a yoga pose, a drug, a piece of jewellery, a book, a smartphone app, a cat, a musical instrument, shrines, candles, perfumes and so on.

Some authors have adapted the notion of “trust” from Kim Sterelny (2010) to explicate the ways in which we can be committed to, or dependent on, scaffolds in order to regulate our affective life (Colombetti & Krueger, 2015, p1162; Coninx & Stephan, 2021, p.49).⁷ To trust a regulatory resource is, broadly, to have confidence that it will have a certain effect on one’s affective state (p.1162). I might trust that playing with the dog at the local pub will lift my mood, for instance, or trust that listening to Klezmer will purge my feelings of restlessness.⁸⁹

As social creatures, we are imbedded in rich societal and interpersonal structures which can shape our affective lives in a variety of ways. Other people and our interactions with them play crucial roles in our lives: we are significantly shaped by our caregivers, our family, our teachers, our friends and our colleagues. Throughout our lives, we learn to trust particular people as reliable scaffolds of certain affective states. For example, we can choose to spend time with a reliably contagiously jolly friend when we are feeling somber, while we can instead choose to spend time with a friend who “gets us” when we are in need of advice.

Given this structural diversity, there are of course many ways in which one’s access to scaffolds can be compromised. In the context of chronic illness, one might expect that we can pull apart some distinct ways in which scaffolding is obstructed. We might distinguish between obstacles in the face of changed relationships with others, from obstacles regulating the effect of one’s bodily condition on one’s affective life. Each of these are interrelated, dependent on one another, such that to wholly pull them apart would be to lose sight of the dynamism involved in an experience of chronic illness. Nonetheless, it is important to look closely at the ways in which the particular features of one’s illness experience can impact upon one’s ability to successfully regulate one’s affective life.

3. Affect and trust in psychopathology

There are multiple rich extant accounts of affective experience in psychopathology. In what follows, I draw on some of this literature to identify a rich notion of the loss of trust which will later feature in my account of affective experience in these chronic conditions.

With a focus on experiences of depression from a primarily phenomenological perspective, Matthew Ratcliffe has argued that central to depression is a sense that certain types of interpersonal connection are no longer possible, that others just cannot offer you what they did before (Ratcliffe, 2015, 2018). In depression, one loses a sense of things as contingent and filled with possibilities, which is instead replaced with a sense of stasis, inescapability and impossibility. A change in interpersonal experience is inextricable from this, since a sense that things can change for the better implicates other people and the possibilities for thought and action which other people are perceived to offer.

Being unable to be affectively “moved” by other people importantly implicates the experience of one’s body, as has been highlighted by Thomas Fuchs. Fuchs describes the person affected by depression, or melancholia, as having become confined to the “spatial boundaries of her material body” (Fuchs, 2005, 2010). Here, the fluidity, spontaneity and transparency which characterizes the body in good health is compromised (Fuchs, 2002, 2005, 2010). Instead, the body is experienced as a heavy, burdensome object which puts up resistance to the individual’s intentions and impulses (Fuchs, 2002, p.99). This experience of one’s body further shapes affective experience of one’s wider environment, including one’s experience of other people:

[T]here is also a more subtle loss of transparency: It concerns the bodily resonance or affectability that mediates our experiences of emotions and atmospheres, and is also required for our affective attunement with others. In melancholia, the corporealized and frozen body loses this capacity for emotional resonance. […] They are no longer capable of being moved and affected by things or persons; the attractive and sympathetic qualities of their surroundings have vanished.

(Fuchs, 2005, p.100.)

Here, one has lost reliable access to various affective states by means of exploiting scaffolds; instead, they are experienced as out of reach. A loss of trust can be implicated in this. Recall that trusting a regulatory resource involves having confidence that something or someone will have a particular effect on one’s affective state. Colombetti and Krueger offer examples of a localized loss of trust, such as an infant temporarily losing trust in a care-giver (p.1168). They also, however, suggest that trust in general might be compromised by loss of previously trusted regulatory resources, shattering “pre-reflective patterns of reliance” (Colombetti & Krueger, 2015, p.1167).

Loss of trust in a particular resource need not involve the broader, more pervasive loss of trust which is characteristic of a loss of trust in general. Of course, one can lose trust in a particular resource for a given period of time, without losing trust in and connectedness with that resource permanently, or in people in general, in the world, or in one’s self. For instance, I might lose faith in the train timetable on my mobile phone app after experiencing some glitches, yet be able to trust it at a later date once the problem is resolved; I can also easily trust an alternative resource in the mean-time. Where the experienced loss of trust is more pervasive, however, one’s ability to exploit a wider range of artifacts, places or people in order to scaffold certain affective states is impeded. This more foundational, pervasive loss of trust in depression is described in detail by Ratcliffe:

If you cannot depend on other people, then you cannot depend on social norms, items of equipment maintained by others, information they provide, and so forth. Erosion of trust can also extend to the efficacy of one’s own actions, to one’s bodily functions; to the reliability of one’s thoughts and feelings; and to the integrity of one’s sense of self.

(Ratcliffe, 2018, p.134)

It is plausible that a string of disappointments leading to broken trust in localized cases might lead to a more pervasive sense that the world is not to be trusted. For instance, where infants are repeatedly let down by their care-givers, this can lead to the loss of trust in not only the care-givers but also in other people in general, and even other features of one’s environment. These different notions of the loss of trust, and their interaction, will be relevant for later discussion.

3.1. Affective scaffolds and trust in chronic illness

Now, I turn my focus to the class of medical conditions that I delineated at the beginning, namely complex and poorly-understood chronic conditions such as Post-Covid Syndrome/Long Covid, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and Fibromyalgia. This section opens up the discussion about (loss of) trust in affective scaffolds to illness beyond psychopathology. Moreover, drawing on data from the EFQ, the discussion emphasizes the irreducibly interpersonal dimension of affective experience in chronic illness. This analysis highlights affective features of the illness experience which can be understood as secondary.

The aforementioned conditions have broad and heterogeneous symptomatology, but fatigue, pain and cognitive impairment are typical amongst each of them. Without consensus about cause, diagnosis and treatment, the conditions are not well-understood. They are nosologically controversial, and extant empirical work suggests there is a higher prevalence of depression than in the general population and sometimes than in other debilitating somatic conditions (Kleykamp et al., 2021; Loades et al., 2021).¹⁰ For instance, it has been found that adolescents with CFS/ME have higher rates of comorbid depression than asthmatics as well as healthy controls (Loades et al., 2019); and Hall et al. (2015) found that adult CFS/ME patients reported greater depressed mood than fatigued breast cancer survivors.

A broader, complementary account certainly could be offered in the context of a range of other chronic illnesses in so far as they would involve many similar somatic, social and interpersonal challenges. However, there are particular motivations in favor of providing this more focused analysis. For one, there is a more serious epistemic gap: it is important for the process of establishing clearer case definitions and nosology for these conditions that we better understand the symptoms and experiences of people who live with them. Relatedly, there are a variety of live hypotheses regarding how the relevant affective features in such conditions are to be understood – hypotheses which are limited in ways I want to highlight.

One prominent way to understand the relationship between these conditions and the high prevalence of psychiatric disorder is to take the view that the psychiatric/affective features are secondary to the condition itself. For instance, they might be caused by poor social support, distress over one’s bodily limitations, and the subsequent negative impact that this has upon one’s quality of life. We can be confident at the outset that, for many people, stigma, misunderstanding and interpersonal upheaval is one of the most challenging aspects of living with a complex, chronic condition. Indeed, there is empirical support for the broad hypothesis that the strength of one’s support networks has a significant effect on well-being in chronic illness (Petrie et al., 2019).

More specifically, one study on CFS/ME defends that the high levels of depression, anxiety and suicidal ideation in CFS/ME is attributable to stigma, interpersonal conflict and a lack of viable treatment options (Devendorf et al., 2020). Moreover, Taylor et al. (2017) claim that depression, while common in CFS/ME, is secondary to the condition and arises because of the impact it has upon quality of life. The causal claim is that the bodily limitations imposed by the condition restrict valued activities, causing patients to feel depressed.¹¹ On this view, an account of the affective features of the patient’s experience reveals little about the condition itself, but instead reveals a lot about the impact of living with a chronic condition in a society saturated with structures and attitudes which alienate, neglect and misunderstand ill people.¹² Here, then, the affective features are not seen as directly attributable to the bodily dysfunction, but to effects which are secondary to it.

Recall the notion(s) of trust in the context of affective scaffolds. A resource, be that an object or a person, is trusted where one has confidence that the thing will have a certain effect on one’s affective state. One can lose trust in a particular resource for a variety of reasons. Moreover, as detailed in Ratcliffe’s discussion of depression, one can suffer a more basic, radical loss of trust in which trust in things and people in general is compromised. Living with a heavily stigmatized, poorly-understood chronic illness is a compelling candidate for a predicament whereby trust, of either type, might be shattered, eroded or otherwise compromised.

For instance, before becoming ill, one might have trusted a friend insofar as being confident that should they feel lonely, they could talk to them and feel understood, thus diminishing feelings of loneliness or being misunderstood by others. There are various ways in which living with one such condition can test or shatter trust in other people as scaffolds. For one, public understanding of these conditions is poor, and often saturated with stigma, such that one can cease to feel understood by even those closest to them. Loved ones might, perhaps for the first time in a particular relationship, fail to understand, fail to ask the right questions, or fail to avoid making hurtful comments. Someone who has always been trusted to “get it”, now, might for the first time, fail to do so, shattering a sense of being understood, at least by them.¹³ The following EFQ response illustrates the suffering that can result from not feeling understood by those close to you:

I am much more emotional than I used to be and often do not feel good enough anymore, especially when others do not understand the condition and do not know just how debilitating it can be. For example, when my 75 year old grandma says that I should be able to do something physically because she can when she does not realize that I no longer can just makes me feel even worse.

(#11)

Friends play many other regulatory roles for us beyond providing feelings of being understood. For instance, one might also have trusted a friend as a regulatory resource insofar as being confident that in times of low mood, one could take part in a shared activity together which would allow oneself to better regulate one’s affective state, such as playing tennis together or going to the pub.¹⁴ Now one faces significant bodily restrictions, shared projects with others that once reliably scaffolded particular positively valanced affective states may no longer be viable. Moreover, where these projects were an important part of one’s relationship with the other person, it can be unclear what the relationship now consists in, creating a sense that those relationships are now compromised:

I can’t do things with my friends that I would like to; I can’t go clubbing all night, go on days out shopping. I feel like I would be a lot closer with my friends if I could partake in all the activities.

(#17)

I lost all my friends because many people define themselves by what they do, so when that is the focus and you can’t do anything, it feels so alienating from everyone.

(#29)

A feeling of not being able to rely on other people in a once habitual way can contribute to a sense that one faces the predicament alone. Where trust in others in general becomes compromised, preemptive withdrawal from other people can follow (Armentor, 2017). If one no longer sees people as beholding possibilities for positive, meaningful exchanges, one can retreat, instead choosing not to seek engagements with others. As another EFQ respondent writes:

I often do not tell friends in case they do not understand/think that I am lazy. I feel like I am very secretive about a huge part of my life which I would not have been before I was ill.

(#17)

The notion of secretiveness here is interesting. There is a distinction to be made between selective secretiveness, such as in the face of a particular person or group of people, and secretiveness in general as a default way of approaching other people. The latter is suggestive of finding oneself in a world where other people in general are not to be trusted. It is not just the loss of trust in a particular person with whom one could be completely honest, but the loss of pre-reflective trust in, and the anticipation of other people as potential providers of a certain type of connection which has the potential to scaffold positive affective states. Instead, one might anticipate all interactions with other people to be naïve, unkind, judgmental, or otherwise unable to understand:

One further loss that I would mention is the ability to be on the same wavelength or level of understanding as other people. You are suddenly in a different world altogether and your needs and restrictions are completely alien to other people and often very tiresome to them. You can no longer understand or identify with their confidence in themselves and their worlds because you can see everything that is missing from their viewpoint and that they have recklessly failed to take account of.

(#25)

As well as a change in close relationships, wider interactions with others with whom one is not closely acquainted can contribute to the transformation of the world into a hostile place, where people do not care, or do not understand, or where nobody is to be trusted – potentially even oneself. Indeed, this might be a candidate for a case of localized loss of trust disposing one toward a more pervasive loss of trust. As is well documented, people living with chronic illnesses cite difficult interactions with GPs, employers, friends and family; sufferers can be stereotyped as neurotic or hyperbolic (Carel, 2016; Kidd & Carel, 2014, 2018). With complex, poorly-understood chronic conditions, people can face the additional burden of not being believed or being accused of malingering (Armentor, 2017; Blease et al, 2017; Byrne, 2020).

Ceasing to feel understood by any group, over any domain of one’s experience, can lead to a pervasive loss of trust in other people. Moreover, where skepticism about one’s illness is expressed from those in a position of epistemic authority, this can predispose one toward a loss of trust in one’s own judgment. In such cases, one’s supply of affective scaffolds is significantly depleted. One EFQ respondent describes the difference that this can make:

Having a very supportive GP and specialist has been hugely helpful – and a sharp contrast to interactions with previous doctors who believe we are all just whingers, or who believe it is purely psychological – which adds hugely to the sense of guilt/blame and self doubt that is so easy to develop and so hard to get rid of in this condition.

(#14)

Though typically central, these interpersonal challenges do not offer an exhaustive explanation of the challenges to affective scaffolding in these complex, poorly-understood chronic illnesses. In what follows, I highlight another aspect which is, to some extent, independent from actual and anticipated stigmatizing experiences with other people, but that still implicates the interpersonal. That is, where one’s bodily condition directly brings about an obstacle to affective scaffolding.

An explanation which focuses only on dynamics of alienating, neglectful and hurtful behavior from others does not capture that one’s bodily condition is inextricably linked with having access to various affective states, dispositions and attitudes. Where the body becomes vulnerable, so too can one’s relationship with the world and other people as part of that world. Perhaps we can say that unpleasant and stigmatizing interpersonal interactions exploit this vulnerability, exacerbating feelings of disconnectedness, but there is more that remains to be said about the nature of that vulnerability which is directly caused by one’s bodily condition. The resultant features of experience are not secondary to the bodily impairment, but are instead primary.

4. Primary affective features of chronic illness

In this section, I examine two hallmark symptoms of these chronic conditions to show the insufficiency of explanations which purport that elevated prevalence of psychiatric disorder is due entirely to secondary effects. I start by examining fatigue, then “brain fog”, and suggest that these two symptoms can directly obstructs access to affective scaffolds.

4.1. Fatigue

Extreme fatigue, which is not eased by rest, is a (but not necessarily the) fundamental symptom of the relevant chronic illnesses (Carod-Artal, 2021; Goldenberg, 2009; Wong & Weitzer, 2021). Though a core symptom for many, it is not a particularly informative one, since fatigue is a symptom shared by countless illnesses across classifications. A particular group of generic sickness symptoms of which fatigue is often principal, can be understood as indicative of an inflammatory immune response: here, the body’s inflammation response serves a physiologically regulative role which is widely recognized to result in changes in behavior and mood, such as a feeling of being disconnected from the world and from others, as well as bodily fatigue. This has been referred to as the “sickness response” (Dantzer & Kelley, 2007; Piraino et al., 2012; Ratcliffe et al., 2013). It is becoming more widely recognized that some cases of depression are likewise associated with elevated levels of certain inflammatory cytokines by white blood cells in response to stress, which may be suggestive of an inflammatory sub-type of depression (Bullmore, 2018; Harrison et al., 2009; Pariante, 2017).

There is, then, already some evidential support for the hypothesis that there is some change on the physiological level which is causally responsible for a loss of access to certain affective states, constituting an obstacle to scaffolding by way of change to extra-neural processes which are implicated in embodied scaffolding (Krueger, 2020, p.598). Where the body is fatigued (either by the aforementioned inflammatory mechanisms, or otherwise), and this results in a sense of detachment and disconnectedness from other people, one’s bodily state means that certain interpersonally-nurtured affective states are no longer accessible. One therefore has diminished access to certain affective states, not because of stressors secondary to the impairment, but directly because of it.¹⁵ It therefore seems that fatigue can present a direct challenge to scaffolding affect.¹⁶

4.2. Brain fog

Looking to another common symptom, “brain fog”, might help to illuminate further nuances here. Clouding mental activity and limiting attention span, brain fog is another very common symptom of complex, poorly-understood chronic illnesses. Empirical work suggests that it affects around 85% of CFS/ME patients (Komaroff & Buchwald, 1991). Experiencing brain fog threatens the cognitive and emotional life of patients, which can cause significant distress. Brain fog was a commonly-discussed experience in the EFQ. Some respondents wrote:

My feelings become numb and especially when interacting with others I no longer have any energy or spark […] I get complete brain fog where I can’t even order words properly anymore (articulation is difficult) and instructions are impossible to follow.

(#9)

There is a certain brain fog that I have which means I can’t necessarily think everything through to the best extent.

(#10)

I’m sure I would now be diagnosed as suffering with depression. I had brain fog all the time and struggled to think clearly and to focus.

(#15)

Some tasks, that I could once do in my sleep, are now painful and very difficult, even the things I used to do for pleasure, such as reading a book. The loss of my cognitive function is one of my biggest stresses. I feel as though I have lost my “clever” and any prospects of success in life. I can manage the tiredness and the physical symptoms, but the lack of cognitive function has the biggest impact.

(#31)

Some of the effects of brain fog described by respondents implicate other people in various ways. For instance, an impeded ability to articulate oneself to others, or follow instructions, will surely affect the ways in which it is possible to interact with other people. If one cannot articulate oneself to others, this creates limits to the type and depth of the interpersonal interactions which are possible.

Respondent #9 explicitly described the numbing of one’s feelings. This suggests that brain fog, by way of affecting the vitality of the body, appears to also impair affective capacity. Where one’s affectability is impaired, certain environmental resources cannot elicit certain affective states in the same way that they did before. For instance, scaffolding affective states by listening to certain pieces of music might not be possible; sounds which might have previously moved the person, conjured up clarity of feeling or enhanced vitality, might instead just “wash over”. Understood this way, it becomes clearer how brain fog can directly obstruct access to various affective states.

Grillon et al. (2015) found that mental fatigue plays a key role in emotion dysregulation, supporting the view that higher levels of cognitive resources are required for successful emotion regulation (Opitz et al., 2012). They suggest that successful emotion regulation depends not only on individual differences in capacity, but also on the extent to which these resources are depleted over time (Grillon et al., 2015, p.5). Of course, brain fog significantly limits what cognitive resources are within reach for the person. As one EFQ respondent describes, in the context of challenges to information processing:

Everything is effort. Optimism can seem a reckless energy that will backfire. When things go down I cannot process information and have no access to the energy of charm and empathy – I become cranky even as I try to avoid acting it out. Love is difficult – it’s hard to present a stable self, and to be able to do things for others when you want.

(#30)

Having “no access to the energy of charm and empathy” is highly illustrative of the pervasiveness of the regulatory obstacle posed by experiences of brain fog. Moreover, it illustrates that this is not a merely personal problem, but an interpersonal problem: where one is cognitively clouded, one’s capacity for empathy is compromised, and so too is one’s capacity to connect with other people. Brain fog, therefore, can have a direct effect on one’s ability to make use of a whole host of environmental resources. For instance, a kind friend who might once have been a reliable facilitator of a balanced, empathic approach to a family quibble might no longer be able to facilitate access to those affective states in the same way that they did before. In such cases, then, one’s bodily condition constitutes a direct obstacle to being affectively moved by others, removing or compromising previously established routes for accessing and scaffolding once-trusted affective states. Such affective features, then, are better understood as primary features of the bodily condition.

5. Causal dynamism and variation

The preceding section focused on fatigue and brain fog in order to show that the relevant affective features of complex, chronic illness cannot be sufficiently explained as secondary to the condition, but rather appear to be better explained as primary. In this section, I focus on a third common symptom, post-exertional malaise (PEM), which is more complicated. The analysis, I suggest, highlights the need for a more nuanced explanatory framework under which dynamic interaction between the “primary” and the “secondary” can be accommodated.

The term “post-exertional malaise” is used to describe the symptom whereby patients experience an intensification of symptoms after a period of exertion. “Exertion” is to be understood broadly here as to encompass cognitive, emotional and physical exertion. Post-exertional malaise affects the majority of patients with CFS/ME (Carruthers et al., 2011). “Exercise intolerance” or “post-exertional fatigue” is elsewhere used to describe a similar symptom in Fibromyalgia research (McManimen et al., 2018). One study into Post-Covid Syndrome/Long Covid found high prevalence of exercise intolerance (Tleyjeh et al., 2022), while researchers interested in the connection between Post-Covid Syndrome and CFS/ME have also investigated the prevalence of PEM, with one study finding that nearly 60% of a patient sample met the CFS/ME diagnostic thresholds for PEM (Twomey et al., 2022).¹⁷

Post-exertional malaise is heterogeneous in terms of onset trigger, gestation period, and duration. In a patient survey into post-exertional malaise in CFS/ME, 84.9% said there were instances in which the precipitants of their post-exertional malaise could not be identified. 78.2% also identified “basic activities of daily living” as triggers (Holtzman et al., 2019). Participants in the same study also overwhelmingly reported that the severity and duration of their post-exertional malaise was out of proportion to the type, intensity, duration and frequency of the exertion, with over 50% of participants consistently selecting that this is true “all of the time” for each of these variables.

Not only do the features of post-exertional malaise vary between patients, any given individual’s experience can also vary over time. When asked how they would describe the course of their illness, only 15.4% of participants described it as “persisting”; the remaining participants described their illness as changing in some way, whether that be “fluctuating” (46.2%), “getting worse” (29.3%), “relapsing or remitting” (7.4%) or “improving” (1.4%). Managing post-exertional malaise requires many people to avoid activities that could potentially trigger a period of symptom intensification. As this data shows, which particular activities are to be avoided is not always clear. This uncertainty can impose almost complete restriction on daily functioning, meaning that even seemingly innocuous activities pose risk.

Even for patients with mild illness, managing this symptom involves having to avoid particular activities, either in general or under particular conditions. Moreover, given the fluctuating nature of symptoms in these chronic, complex conditions, managing and preventing the intensification of symptoms can involve having to decide not to engage in a particular activity, even if one feels perfectly able and willing at the time of making the decision. For instance, one EFQ participant wrote that they, as a matter of course, cannot engage in social activities during the week since they would be unable to work the following day:

Relationships with my friends have broken down, as I often have to cancel plans last minute and I am unable to take part in activities that they want to do – such as going to a class at the gym, going to the pub, anything in an evening during the week is a huge no.

(#11)

Such intrapersonal variation here can lead to a sense that no activity is safe, even if it is desired, even feels possible, and would otherwise provide scaffolds with which to regulate one’s affective life. Recall that the breadth of what constitutes “exertion” here has scope over cognitive, emotional and physical exertion. Thus, depending on the severity of the given individual’s condition, even certain moods or emotions can be considered unsafe, and so activities which might elicit them have to be avoided. Where one need not only avoid certain activities, but also affective states such as excitement, one’s incarceration is even more profound. Where one must avoid affective states which have regulatory power, this hugely restricts the world of the patient, making previously instrumentally valuable affective states dangerous and potentially regrettable:

Excitement takes energy and is the enemy and you learn to tone it down

(#30)

The challenge that this poses for affective scaffolding has its root in the fact that once-reliable ways of interacting with the world and other people in order to scaffold certain affective states are now no longer experienced as viable or safe; instead, they are out of reach or are otherwise filled with danger. Having to mitigate against symptom intensification can obstruct access to a whole host of trusted scaffolds, even scaffolds relatively peripheral to one’s life but which can nevertheless be accumulatively significant. For instance, one may no longer be able to play one’s musical instrument should it tire one’s muscles or leave one short of breath, or no longer be able to wear one’s favorite but less comfortable shoes should they leave one without the energy to walk home. Though not necessarily central to one’s daily life, scaffolds like these can play an important role in regulating one’s affective life and supporting feelings of “being oneself”.

As well as material scaffolds like musical instruments and clothing, mitigating against post-exertional malaise can also affect social scaffolding to the detriment of interpersonal connection with others. In good health, for instance, if one wants to express gratitude to a friend, one might take them for dinner. For the person avoiding post-exertional malaise, such activities and the interpersonal engagement they provide might still be desired, and might still in some sense feel possible, but be sacrificed at the expense of managing one’s symptoms. One has to make a conscious decision to restrict desired activities in the knowledge that is necessary for one’s health.

Crucially, then, withdrawal from scaffolds here does not always reflect (a) affective capacity or (b) bodily capacity at the time of decision. Rather, withdrawal can be a decision based on forward-thinking and vigilance. Here, all of the needs, desires and complexities of one’s affective life which existed before the bodily change remain, but previously relied-upon scaffolds are no longer exploitable. For instance, anxiety is still felt, but going on a run to diminish or “sweat out” the anxiety is no longer an option. Some participants of the EFQ describe this inability to engage in once-trusted regulatory activities:

I am not able to engage in certain activities I might have done before to pick up my mood (for example feeling bored/lonely I cannot always just go have some excitement or interact with others) […] I have also experienced a few stages where I’ve needed to focus all my energy on work where I have felt depressed because I have not engaged in any “fun” or social activity other than chatting to housemates or my partner for a month or two.

(#6)

Lovemaking depends on health.

(#31)

Looking closely at how post-exertional malaise obstructs scaffolding illustrates some important inter- and intrapersonal variation in illness. Earlier, I highlighted how some of the obstacles to scaffolding are directly caused by the bodily impairment. The reality for many such chronically ill people, however, is that the condition fluctuates such that certain symptoms are not constantly present, at least in their most severe and debilitating form, but are a constant threat to be avoided. When one is not in the throes of a crash, one can still, albeit indirectly, be denied access to scaffolds and regulatory resources by virtue of having to sacrifice certain behaviors in order to prevent a crash. When one is in the throes of a crash, and symptoms are severe and debilitating, one faces an intensification of other debilitating symptoms such as fatigue and brain fog which can directly obstruct regulation.

This is not to be understood in dichotomous terms, however. There are not merely two states, in a crash or not; the illness experience is often much messier. Even when a person is not currently in a crash, by virtue of being chronically ill one experiences a base-level of symptoms, such as fatigue and brain fog, which might directly obstruct access to at least some scaffolds. Hence, one can still face problems exploiting scaffolds and regulatory resources in a way that is tightly bound to the bodily impairment, while also exercising judiciousness over other regulatory activities which could trigger a further intensification of symptoms which would exacerbate the impact upon one’s ability to scaffold. There is an important dynamic interplay of factors here which mutually constrain each other over time to the extent that the distinction between primary and secondary affective disruption obfuscates rather than clarifies the relevant phenomena.

Even if there are particular instances where one can explain a certain emotional episode as primary or secondary, this is not to say that this explanation will hold over time. One ought to distinguish between the regulatory obstacles faced by a person, S, at T1, who suffers recurrent but sporadic episodes of post-exertional malaise, but is not currently experiencing it, and S at T2 where S in the midst of an episode of post-exertional malaise, and so thus is likely to also be experiencing an intensification of other symptoms, like extreme fatigue and brain fog, concomitantly. It may be that at both T1 and T2, S cannot exploit scaffold X, but with markedly different causal interaction of causal factors in each instance. Identifying particular regulatory obstacles and their origin, under the framework of affective scaffolding, allows for a nuanced explication of why any particular scaffold cannot be exploited at any particular time. This detail might otherwise be missed in empirical contexts if one is wholly dependent upon behavioral clues, which might be indistinguishable at T1 and T2, to identify affective disruption.

6. Regulatory repertoires and pre-morbidity

As well as intrapersonal variation, another key feature of chronic illness is that its experience is also not consistent across the patient population, but rather each person’s experience is shaped by the details of their own natures and circumstances. One might be able to understand the affective disruption of person S as near-exclusively caused by lack of access to resource Y, yet person P may continue to enjoy a stable relation with regulatory resource Y, yet be prevented from exploiting valued resource Z. Hence, it will not be viable to formulate any single, inflexible explanatory account of affective disruption which holds across the patient population.

The interpersonal dimension of experience is one significant aspect of the many-faceted struggle of living with chronic illness. Of course, not every person’s experience of chronic illness involves the same type or degree of interpersonal disruption. For some people, all actual and anticipated relationships with other people become adversely affected, while for others, some may come under strain yet some are preserved or even strengthened.

In a variety of contexts (social, political, scientific), whether and how people are emotionally affected in the face of hardship is often discussed in terms of “resilience”, a notion often loaded with value judgments about a person’s core hardiness or strength. In medical research contexts, resilience is often referred to insofar as low resilience appears to be a risk factor for disease, especially in the context of complex “functional” disorders. Casale et al. (2019), for instance, found that a “resilient personality” is relevant to the development of Fibromyalgia: the authors pick out difference-makers which can increase one’s chances of developing the condition, and acknowledge that resilience is to be understood as an ability that develops during life “on the basis of existential circumstances […], increased by having access to social resources, being a member of a community, cultivating social relationships, having a supportive family, and maintaining affective bonds, and is also influenced by attachment, social learning, socio-economic status, religion and culture.” (Casale et al., 2019).

Scaffolding is a useful conceptual framework for understanding what unites these difference-makers, and importantly, how these difference-makers do not have their seat in a person’s essential moral fiber, but instead in the nature of one’s circumstances through time. Griffiths and Scarantino (2009) distinguish between synchronic and diachronic environmental scaffolding: rather than being concerned with supporting particular emotional episodes, diachronic emotional scaffolding is concerned with the way in which the environment supports the development of a repertoire of emotional abilities which can be drawn upon over time (p.12). Similarly, Coninx & Stephan describe scaffolding at the ontogenetic scale, that is, the diachronic shaping of regulatory repertoires by, say, environmental changes or the lifelong development of mutually-shaping relations with other people (Coninx & Stephan, 2021 pp.53-55;). With the aforementioned difference-makers for resilience in mind, these distinctions serve as a useful springboard to look in greater detail at the various ways in which in chronic illness can threaten ones interpersonal, and thus affective, life.

People’s regulatory repertoires are crafted over time. These repertoires constitute different styles of scaffolding: different ways of engaging with things, particular individuals, groups, or in general. Plausibly, then, the nuances of people’s regulatory repertoires will affect how and whether a particular circumstantial threatens one’s ability to act within that repertoire, and in consequence, regulate one’s affective life.¹⁸ It is important to emphasize that these diachronically-nurtured factors are essentially interpersonal and circumstantial in nature. Consider the following EFQ response:

It’s very hard for others to continually adapt to unpredictable changes unless there is already a strong relationship.

(#30)

If we examine all that can be captured by “unpredictable changes”, we can see that certain interpersonal styles can be made more vulnerable than others by illness. Earlier, I discussed testimony from a participant who expressed a sense that they would be closer to their friends if they could partake in certain shared activities. Relationships that are maintained by actions and behaviors such as fast-paced intellectual discussion or shared physical activities, cannot be preserved as they were if one’s symptoms preclude those things from being possible. One might hold dear a relationship with an elderly relative which is maintained by an informal caring role; potentially not particularly compatible communicators, reliable action is what is important for sustaining the bidirectional feedback loop of expressions of love and the maintenance of a sense of closeness. Where those actions are no longer possible, how or whether one can maintain the relationship might be unclear, thus leaving the status of that relationship fragile or diminished and its affective function stripped.

Particular relationships require particular things for their maintenance. Some close relationships may primarily be dependent upon subtle gestures like exchanging a knowing look, physical proximity or touch. There is an extent, then, to which such a relationship can more easily be preserved when one faces bodily restrictions. The maintenance of other relationships, however, may require something more demanding of cognitive or bodily energy, such as intellectual conversation, quick-witted humor or joint activity. Of course, different symptoms will put different strains on interpersonal life here. For instance, where one suffers from severe brain fog, certain types of conversations will no longer flow like they may have done before. Depending on the types of conversations one is disposed to engage in in order to scaffold certain affective states, either in general or with particular individuals, an experience of severe brain fog will have a more or less pervasive impact on, say, a sense of closeness to other people, or a sense of being true to oneself.¹⁹

Interpersonal variation can be appreciated by recognizing heterogeneity in symptomatology, as outlined above, but also by recognizing how interpersonal relations, and the type of affective scaffolding they offer, differ qualitatively. Appreciating the dynamic interaction between these factors makes salient how short-sighted any binary causal explanatory framework for understanding affective disruption in illness is. The intricacies of one’s interpersonal life before becoming ill importantly shapes the terrain on which the subsequent bodily disruption takes place. If feeling close to others and using them as scaffolds requires exactly those things which are taken away in illness, one will sooner experience regulatory obstacles. The effects of facing such obstacles are not strictly primary nor secondary to the bodily impairment; rather, they are temporally dynamic difference-makers which play a role in shaping the subsequent affective experience.

Conclusion

Here I have argued that attending to the dynamic interaction between the ways in which poorly-understood chronic conditions impact upon personal, bodily and interpersonal dimensions, is essential for a full understanding of the impact that such conditions have upon one’s affective life. I criticized a strictly binary causal explanatory framework where only primary and secondary effects can be accommodated, and showed that it fails to accommodate both intra- and interpersonal variation. Through the lens of the affective scaffolding framework, I offered an analysis of three hall-mark symptoms of the conditions in question to illustrate the dynamic ways in which they impact upon one’s ability to scaffold and hence regulate one’s affective life.

As well as these factors, which are only relevant once one has become ill, I also finished by considering the role of pre-morbid causal factors. I discussed the nature of one’s diachronically-crafted regulatory repertoire, that is, the toolkit of scaffolds which one builds throughout the course of one’s life. I suggested that this concept can be used to further understand extant discussions of “resilience” which emphasize circumstance rather than essential moral fiber.

Ultimately, I have attempted to show that the affective scaffolding framework is well-placed to understand the role of such temporally dynamic, highly interactive factors in shaping the affective experience of people who suffer with these conditions. Going forward, researchers ought to be wary of empirical claims which purport to explain affective disruption in complex, poorly-understood chronic illnesses like Post-Covid Syndrome/Long Covid, CFS/ME and Fibromyalgia as wholly primary or secondary to the bodily impairment. I also hope that this initial discussion can motivate future research into affective experience in the context of a range of other conditions and bodily experiences not discussed here.

Acknowledgments

Thanks to the participants who contributed to the questionnaire study, and thanks for helpful feedback from two anonymous reviewers and audiences of: the European Philosophical Society for the Study of Emotions (Graz), the Centre for Medical Humanities and Bioethics (Linköping), the European-American Online Workshop in Philosophy of Emotion, and the Centre for Studies in Practical Knowledge (Södertörn).

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1. Post-acute SARS-CoV-2 is, of course, a newer condition which does not yet have a settled internationally endorsed term, but can also be recognized as “Post-acute sequalae of Covid-19” (PASC).

2. One might hesitate to include PCS/LC/PASC in this list because of the certainty of a particular viral agent which necessarily plays an etiological role (after all, none of the other conditions have any such level of certainty). However, research so far is indicative of many familiar challenges in identifying a case definition, pathophysiology and informative biomarkers such that I believe it to warrant inclusion in this more focused discussion (Wong & Weitzer, 2021).

3. In contrast with “condition” or “disease”, “illness” here has scope over the “situated” aspects of the experience, such as social suffering. This distinction is from Havi Carel (2016).

4. Psychiatric conditions, namely depression, are not solely concerned with strictly affective features e.g., appetite or sleep change. However, either “depressed mood” or “loss of interest or pleasure” is a necessary symptom for a depression diagnosis, and many other features and symptoms have an affective dimension (American Psychiatric Association, 2013).

5. This qualitative questionnaire study was conducted in 2019 and was given ethical approval by the University of York’s Arts and Humanities Ethics Committee. People who identified as suffering from “Chronic Fatigue”, “Chronic Fatigue Syndrome” or “Chronic Fatigue Syndrome/Myalgic Encephalomyelitis” were invited to answer a series of online open-ended phenomenologically-grounded questions about their experience across different dimensions e.g., emotional, bodily, interpersonal, temporal, existential. 31 participants were recruited through University advertising and regional patient organizations, and a phenomenological analysis was carried out on the data to uncover relevant experiences and distinctions. The data set can be seen on my website.

6. There are grounds for some caution regarding the extent to which phenomenological data can be seen to support or challenge causal claims. Nonetheless, first-person lived accounts of the illness experience are, in my view, importantly informative in addressing an historic lack of patient-informed research which could be used to motivate new empirical hypotheses.

7. Coninx & Stephan’s rich taxonomy grounds scaffolding as a polyeidic concept, meaning that it can be described in terms of numerous dimensions indicating the usefulness of the scaffold for the agent. Trust is one such dimension, alongside “robustness” (the stability of the integration into the agent’s affective life), “mineness” (the extent to which that scaffold is integral to the agent’s self-narrative) and others (2021Coninx & Stephan, 2021p.50).

8. See (DeNora, 2000), for a rich account of music as scaffolding.

9. In his work on emotion regulation, of which affective scaffolding can be a means, James Gross highlights that it involves much more than simply enhancing positive affect and suppressing negative affect (2014, p.13). For instance, we might find ourselves motivated to “cry out” a nebulous feeling of sadness by listening to a certain piece of music or watching a certain film.

10. It is too early into research into Post-Covid Syndrome to make a strong claim about this here. One review of the prevalence of depression in the clinical population suggests a high frequency of clinically significant depression, but highlight that there is insufficient certainty to assert that rates are significantly higher than the non-clinical population (Renaud-Charest et al., 2021). Some researchers have drawn parallels between Post-Covid Syndrome and CFS/ME, for which there is good empirical support for this, but others warn against hasty parallels. One of many reasons why it is important to do this work is that there have been significant reports of patients in primary care being “psychologized” by medical professionals. Plausibly, this psychologization thrives on under-supported theories about not only the prevalence of psychiatric symptoms in patients, but also the assumed causal sequence of it (see Byrne, 2022).

11. This causal explanation is also raised, neutrally, by Hall et al. (2015).

12. See Kidd (2019) for a discussion of pathophobic vices.

13. This is a familiar theme from Susan Brison’s Aftermath (2002, p.16), a powerful philosophical analysis of trauma following sexual violence. She describes how the failure to be properly understood, or heard, by others can be retraumatising, bringing to the surface feelings of being alone and under threat.

14. Coninx and Stephan (2021, p.54) aptly distinguish between unidirectional and bidirectional interaction; examples like playing tennis describe bi-directional scaffolds, meaning that there exists a reciprocal coupling between the scaffold and the thing scaffolded.

15. Such inflammatory mechanisms are one relevant example, but it is worth clarifying that “primary” restrictions need not be grounded in such a bodily cause. Thanks to a reviewer for inviting this important clarification.

16. Rimes et al., 2016 suggest that, in CFS/ME, low observer-rated emotional expressivity could result in others failing to identify the individual as being in need of support, thus potentially contributing to the development or maintenance of the fatigue. However, Rimes et al also hypothesize that the fatigue itself may contribute to reduced outward displays of emotion, and call for research into this hypothesis (2016p.10).

17. There is still a considerable amount of terminological confusion surrounding this symptom across diagnoses. The term “PEM” is principally associated with CFS/ME research, which may influence Covid-19 researchers to either adopt or dismiss the label in ongoing research into post-acute symptoms depending on their view of whether drawing parallels between the two conditions is strategically and/or scientifically beneficial.

18. Indeed, this hypothesis is compatible with some formulations of pre-morbid risk in CFS/ME research (see Harvey & Wessely, 2009).

19. The exploitation of a scaffold being important for a sense of being true to oneself is compatible with the dimension of “mineness” recognized by Coninx and Stephan (2021, p.50). This dimension may also support a story about why the loss of some scaffolds matters more than others, and why the inability to replace scaffolds as a result of bodily impairment, such as brain fog, can be so affectively destructive.