What do my problems say about me?

ABSTRACT

‘If I experience X, is it because of the illness, the medication, or is it ‘just me’?’ (Karp 2009) [Is it me or my Meds? Living with Antidepressants. Harvard University Press]. This issue is known as self-illness ambiguity (SIA) (Sadler 2007) ["The Psychiatric Significance of the Personal Self." Psychiatry: Interpersonal and Biological Processes 70 (2): 113–129]. In her paper Know Thyself: Bipolar Disorder and Self-concept, Carls-Diamante (2022) [“Know Thyself: Bipolar Disorder and Self-Concept.” Philosophical Explorations, 1–17] offers a taxonomy of different ways in which Bipolar Disorder can be related to one’s self and self-concept. In contrast to the essentialist model of mental disorders she seems to adopt, I propose a different outlook on SIA, following an enactive approach to psychiatric disorders as disorders of sense-making. One’s way of making sense of the world and/or oneself can become stuck in a rigid pattern that is stronger than oneself and at odds with how one would want to be. I argue that it is helpful to distinguish between the experiential SIA of specific experiences (Am I over/underreacting?) and the long term concerns of existential SIA (How to live my life in accordance with what matters to me despite/while having certain vulnerabilities?). I conclude that knowing oneself is not an intra-individual matter, nor primarily a matter of reflection: it is rather a relational and material practice of trying to live your life in accordance with what matters to you.

KEYWORDS:

• Self-illness ambiguity
• authenticity
• self-knowledge
• mental health
• enactive psychiatry
• agency

I. Self-illness ambiguity

‘So I’m not sure if that was the mania, or if that was just me.’ (Inder et al. 2008, 128)

‘Am I being anorexia [sic] because I’m not having a spread, or is that me being perfectly capable of making my own decision, about what I do and don’t like? (…) it is difficult to know..’ (Participant 23; Hope et al. 2011, 25)

‘I think I was born with the tendency to think pessimistically and be overly sensitive and anxious. At what point did my temperament metamorphose into symptoms of a disease? Are they distinct or are they one and the same?’ (Henry 2000, 1508)

‘The other thing is that it really impacts my identity (…) I haven’t figured out what I want in life, in a partner, in what kind of girl I’m looking for. And sometimes I feel that the depression and the medication and feeling better confuses that.’ (Karp 2009, 110)

These are some examples of what Sadler (2007) calls self-illness ambiguity (SIA). Since mental illnesses pertain to how one feels, thinks, perceives and/or acts, one may wonder: if I feel or think or act in a certain way, is that me, or is my experience somehow influenced by my disorder? Medication similarly affects our experiences, so one may ask: ‘if I experience X, is it because of the illness, the medication, or is it ‘just me’?’ (Karp 2009, 119). Struggles with SIA have been reported by patients suffering from different disorders (Dings and Glas 2020). Apart from individual differences, SIA may also turn out differently for different disorders depending on factors like (a) age of onset; (b) whether or not the disorder has an episodic character; and (c) whether symptoms are experienced as egosyntonic or egodystonic.

Since ‘self-illness ambiguity’ has become the main term in this debate, I will use it too, but I do find it a bit misleading to the extent that it invites us to suppose (i) both illness and self as entities that (ii) can be separated, and that (iii) ambiguity is something that needs to be resolved. All these assumptions are debatable, though. Or rather; they are only one way of looking at the issue at stake, one way to answer the question: how do I relate to my problems and how do my problems relate to me?

II. Different heuristic frameworks

In her paper Know Thyself: Bipolar Disorder and Self-concept, Carls-Diamante (2022) argues for the importance of getting clear on one’s self-concept and offers a taxonomy of different ways in which Bipolar Disorder (BD) ‘can be incorporated into one’s broader self-concept or sense of identity’ (7). She proposes that BD can (1) contribute to the self; (2) scaffold the self; (3) be regarded as not part of the self; (4) become part of the self. She points out that these are dynamical categories that can change over time and that they are not mutually exclusive either. Still, the taxonomy could help in ‘trying to account for BD within one’s overall self-concept’ (14), Carls-Diamante argues.

Carls-Diamante’s account presupposes a number of things. One of its main assumptions is that SIA is something that needs to be resolved and that getting clear on one’s self-concept is a way to do so. This getting clear is moreover regarded as a matter of individual reflection and deliberation – following, as she points out, a long Western tradition of assuming individuals as independent rather than interdependent. I have argued elsewhere that relying on individual reflection is problematic, especially when the disorder also colours your deliberation: a depression or mania affects how you reflect on things too (De Haan 2020c). This is actually part of the problem, also – Potter (2013) and Inder et al. (2008) point out – in the case of BD: how do I know whether I can trust myself? It makes sense to not only rely on individual reflection, but use relational strategies as well; taking advice from friends, partners, and/or family members. The same goes for one’s self-concept or self-narrative: these are part of the problem too. There are competing narratives for making sense of myself and my actions, and how do I know which is ‘the right one’? ‘Was it the mania, or was it just me?’ (Inder et al. 2008, 128): should I chose for option 1 or 3 in the proposed taxonomy? Getting clear on one’s self-concept or self-narrative is thus ‘the outcome of rather than the means to achieving authenticity’ (De Haan 2020c, 350). Potter (2013) moreover argues that we shouldn’t adopt a too restricted notion of self-narratives. The ‘hinge-narratives’ that she proposes, let some of the ambiguities be.

Finally, although Carls-Diamante specifies that her notion of the self is a ‘heuristic tool’, refraining from any ontological commitments, she doesn’t explicate her concept of illness. This, however, is crucial for how you conceive of the relationship between self and illness. Her implicit assumption regarding BD seems to be in line with Nassir Ghaemi’s (2013) characterisation of BD as ‘a pathology of the body producing psychological symptoms’ (67).¹ On such essentialist (Kendler, Zachar, and Craver 2011) or latent variable (Borsboom 2008) models, psychiatric disorders are underlying causes of specific psychological symptoms. Applied to self-illness ambiguity, the task becomes teasing out the specific impact of BD on personality traits. If we could give BD a colour, we could trace its effects on different personality traits as we might use a contrast fluid to highlight our veins.

Here I want to propose a different take on self-illness ambiguity, starting from a different, enactive, perspective on mental illness. From this perspective, psychiatric problems are structurally disordered patterns of making sense of oneself and/or the world (De Haan 2020a, 2020b). Instead of being attuned to the present situation, one’s sense-making is biased in a certain direction: If, regardless of the specificities of the situation, I experience the situation as threatening, or meaningless, for instance, my sense-making has become rigid or inflexible. This pattern moreover has a certain ‘stickiness’ (Nielsen 2020) or gravitational pull: its self-sustaining organisation makes it hard to escape. From a first person perspective this can be experienced as a lack of agency: I feel, act or react in a way I don’t want to and that in some sense is out of my control. This incongruence can either be experienced directly (e.g. I don’t want to keep washing my hands, but I feel I have to) or in retrospect (as in manic or psychotic episodes).

Patterns of sense-making have a history: we developed them in response to past situations, and patterns that are now ‘dysfunctional’ – in the sense of holding us back or standing in our way – may have once been functional. Following this view, we can see how difficult it can sometimes be to distinguish between character and illness. After all: I have this particular history, I have these particular sensitivities and strengths; that is part of who I am. I can also be ambivalent about the sense-making patterns that I have become trained in: for instance, the attitude of ‘don’t whine about it, just shut up and get on with things’ may have helped me in some, yet hinders me in other situations. And given that we always develop ourselves in interactions with others (and that there is thus no ‘uncontaminated core self’ to fall back on), it isn’t straightforward to figure out which of our tendencies are part of our character, or temperament, and which are not, and which may even be considered ‘an illness’.

There are, however, certain clear indicators: if I can’t help but react in a certain way, if I don’t feel agency over my reaction, if I suffer from it, and if I wouldn’t endorse my reaction when you ask me later, this is indicative of a problem. In that sense it is not me; it is a tendency or pattern that is stronger than me, than the me I want to be. We do not coincide with the patterns we enact. We can take a stance on how we respond and feel and act, and we can feel that this is not how we want to respond or feel or act. We can feel that some of our tendencies stand in the way of acting in accordance to what matters to us; of living our lives authentically. My anxieties, for instance, are holding me back and I suffer from that: I don’t want to be this person who is always so worried and afraid and who misses out on life because of that. Now of course we cannot make ourselves into any ideal version that we would like to be, we have to make do with our specific sensitivities and quirks; these are also what make us us. So it is a gradual matter, but there is a point at which the incongruency between how we feel, think, or act and how we would want to feel, think, or act becomes too big. Yes, these can be deeply engrained patterns of reacting and interacting and as such are part of me, yet they are also not part of me, since they are standing in the way of who I want to be, how I would want to behave.

III. Experiential and existential ambiguities

At this point, I think it’s helpful to distinguish between two kinds or aspects of self-illness ambiguity. On the one hand, there is the acute SIA of making sense of one’s current experiences: how to assess what I experience now? Is this me doing well, or me being manic? And there is the long term SIA of how to make sense of being someone with certain difficulties: How to live my life, how to look at my past and future, given that I suffer from this disorder? The first two examples in the introduction pertain to what we could call experiential SIA, the second to what we could call existential SIA.² The two are of course related: because we regularly experience acute SIA, we start wondering about the long term – but also vice versa: our existential considerations affect how we make sense of our current (or past) experiences. Because of the diagnosis, we can see some of our experiences in a new light, for instance. Still, it is helpful to distinguish them, because they are different kinds of questions, that call for different methods for addressing them.

Following the enactive conception of psychiatric problems, we can reformulate the question of experiential SIA as: Am I over/underreacting? Is my reaction warranted by the situation I am in, or is it rather indicative of my own difficulties? Am I overreacting if I feel threatened by my colleague’s remark? Am I underreacting when I don’t feel anger when someone treats me badly? Would anyone feel this way, or is it me? People are different, obviously, in very many ways, and this will matter for how we each make sense of a situation. There is not just one ‘normal’ reaction; there is going to be a whole range of viable reactions. Also: when you conclude that it is you, this should not be taken as an accusation, as in: ‘you’re the problem’, or even ‘you’re to blame’. A key characteristic of an enactive approach is precisely that it offers an holistic alternative to overly individualistic approaches to mental health problems. Our sense-making does not sprout out of our heads; how we are embodied, how we are embedded, how we are situated, our histories, all matter for how we make sense of things. Acknowledging the complexity of what has led to one’s problems will make the blame game lose its appeal. It is not about blame: it is about recognizing a pattern in order to loosen its grip on you.

Existential SIA concerns the struggle of how to live my life in such a way that I can enact what matters to me whilst reckoning with my vulnerabilities. This includes the stance one takes on one’s problems: fighting, accepting, or embracing them, or anything in-between. Or embracing some elements while trying to get rid of others. In the case of BD for instance, one might want to retain the heightened moods, creativity, and the intensity of social interactions, but not the excessive spending, conflicts, and depressive collapse. As Potter (2013) points out, medication can play an important role here too, and it may require some experimenting to find this sweet spot between suppression and release: the wiggle room of just enough control. For many of us, dealing with our vulnerabilities implies developing some sort of personal life manual: what works for me, which situations should I avoid, how can I balance between what I want to do and what I need to do to take care of myself? This brings us back to the quest to ‘know thyself’.

IV. Know thyself

For someone suffering from BD, the aim of ‘knowing thyself’ might refer to knowing:

1. What mood state am I currently in?

2. What does that say about the reliability of my judgments?

3. What triggers certain of my moods or episodes? Is there a discernible pattern? In which contexts do triggers occurs?

4. What can I do to prevent triggers and to (re)gain control or agency over my mood and related sense-making and actions? What helps or strengthens me? What role can medication play and how do I find an optimum between its wanted and unwanted effects?

Although such life-manuals are highly personal, we don’t have to do all of this on our own. Knowing oneself is not an intra-individual matter, nor primarily a matter of reflection: it is about arranging right circumstances, the importance of relationships, of friends and partners who support you, invite you, and warn you, of living a structured life: it is a relational and material practice of trying to live your life in accordance with what matters to you. Knowing thyself is not just about knowing certain facts about yourself, but also about being true to oneself (cf. Gipps and Lacewing 2019). And in the end, we may get to point (e): when managing one’s illness or vulnerabilities shifts from trying not to be overwhelmed to recovery, and self-preservation turns into (self-)growth.

Acknowledgments

The author would like to thank Richard Gipps for his helpful comments on this paper. This publication is part of the project ‘Is it me or my disorder? Authenticity in psychiatry’ (with project number 275-20-067) of the VENI research programme which is financed by the Dutch Research Council (NWO).

Disclosure statement

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

Additional information

Funding

This work was supported by the Dutch Research Council under Grant VENI (275-20-067).

Notes on contributors

Sanneke de Haan

Sanneke de Haan is Socrates Professor of Psychiatry and Philosophy at the Erasmus School of Philosophy, Erasmus University Rotterdam, and Assistant Professor at the Department of Culture Studies at Tilburg University. She works at the intersection of philosophy and psychiatry. She currently works on the NWO-funded project ‘Is it me or my disorder?’, investigating self-illness ambiguity for patients with recurrent depressions. Her book on Enactive Psychiatry was published by CUP in 2020.

Notes

1 Carls-Diamante (2022) characterizes BD as a ‘heritable, lifelong psychiatric illness’ (3) and stresses the role of ‘neurophysiological and neurochemical factors associated with BD’ on ‘personality, cognitive, or behavioral characteristics’ (9). She argues that by getting clear on the genes involved in BD and their effects on brain development we could ‘determine the nature of the relationship between BD and the emergence of these traits’, leading to a ‘biological grounding’ of the relationship between self and BD (9).

2 Dings and Glas (2020) distinguish between a phenomenological and a conceptual level of SIA, where the phenomenological level refers to experiencing ourselves in an ‘unreflective manner’ (336) while the conceptual level of SIA refers to when we pay attention to ourselves in a reflective manner. The distinction between experiential and existential SIA that I am proposing here is instead a distinction of time and scope, with experiential SIA referring to specific, singular experiences and existential SIA referring to more overarching and long term concerns.