While the numbers of persons affected by autoimmune diseases increase on a global scale, the cause and genesis of these diseases are still unresolved within the biomedical model. New ways of tackling the open questions are thus in demand. This article proposes an alternative approach, which conceptualise autoimmunity as a variation of the “conditio humana”, the human condition. The theoretical frame of the ongoing project is provided by speculative philosophy and the philosophical anthropology of Helmuth Plessner.

Starting with medical-historical aspects of immunology, the common imagery connected with autoimmune diseases is shown as counter-productive in regard to coping with such diseases. To find new images, the technique “EEE – Exercises in Existential Eccentricity” is introduced, based on the biophilosophical notion of “eccentric positionality” by Helmuth Plessner. The technique refers to autoethnography with its focus on the body of the researcher and draws on the notion of the “dialogical self” by cultural psychologist Hubert Hermans. The data resulting from applying the EEE are finally transformed into poetry via “poetic transcription”. The goal is to open the door for an expanded understanding of autoimmune dynamics and to provide supportive images for persons affected by autoimmune diseases.

The presented project aims to understand a strange phenomenon called autoimmunity. It is defined as a specific adaptive immune response against self-antigens, meaning that the immune cells of a body’s defence system turn against its own tissue cells. The term ‘autoimmune disease’ is used in the case of tissue damage as a result of these processes. Examples of such diseases are rheumatoid arthritis, psoriasis, multiple sclerosis, Crohn’s disease, and SLE (systemic lupus erythematosus).

Anderson and Mackay report in their Short History of Autoimmunity that five to ten per cent of the population face an autoimmune disease within their lifetime and that the number of persons globally affected is constantly growing (Anderson/Mackay 2014, p. 2).

The cause and genesis of these diseases are still unresolved within the biomedical model.

So, on the one hand, this work is about a crisis within, affecting the individual body, but at the same time, about dealing with a global crisis, a worldwide increasingly problematic situation aggravated by the long-term effects of the COVID-19 pandemic, and the long-haul COVID or post-COVID syndrome (PCS), showing many similarities to the clinical picture of autoimmune diseases.1

The history of autoimmunity is quite young. The term was coined in 1957, and the underlying concept had difficulties being accepted by doctors and immunologists. This is due to the “paradox” at the heart of the term (Anderson/Mackay 2014, p. 2), resulting from the classical understanding of the immune system and its functions. One of the pioneers of immunology, Paul Ehrlich, even assumed a natural “horror autotoxikus” (fear of self-poisoning) regarding the horror induced by the possibility of a body directing its immune reactions against its own tissue. He wrote:

[…] The organism possesses certain contrivances by means of which the immune reaction, so easily produced by all kinds of cells, is prevented from acting against the organism’s own elements and so giving rise to autotoxins […] so that we might be justified in speaking of a ‘horror autotoxicus’ of the organism. (Ehrlich 1957, p. 253)

Since then, the notion of the autoimmune body as a body that “fails to recognize itself” or “treats itself as foreign” (Anderson/Mackay 2014, p. 2-3) has been painted as a dark and threatening image. In patient advice books, this grim tone is still present, as the frequent use of civil-war metaphors shows. In the lupus guidebook, “Rat und Hilfe bei Lupus”, Illona Hilliges not only speaks of a civil war taking place inside the body, but she explicitly compares autoimmune processes to the operations of a terrorist war waged by the immune system against the rest of the body (Hilliges 2001, p. 60).

These motives can be traced back to the biomedical immunological discourse of “self” vs “other”, still fuelled by the model of “clonal deletion” that was drafted by another pioneer of immunology, Frank Burnet. Clonal deletion means the extermination of immune cells that have expressed receptors for “self”. The principle behind it is based on “central and peripheral tolerance”, control mechanisms that, according to Burnet’s model, fail in the case of “auto-reactivity” – with the possible consequence of cell damage, the damage of whole organs and the emergence of diseases like rheumatoid arthritis, MS, SLE, etcetera (cf. Rink et al. 2012, p. 15).

The upholding relevance of this traditional understanding of the immune system can be seen in the way information about autoimmunity is communicated to patients and in how it is communicated via mass media.

Examples of such medial figurations of autoimmunity include the documentary by Binsack und Fräntzel (2016) titled Mein Körper – mein Feind. Autoimmunerkrankungen auf der Spur (My Body – My Enemy. Tracking Autoimmune Diseases); the news article: Autoimmunerkrankungen: ’Unser Körper ist unser größter Feind’ (Perrevoort et al. 2012; Autoimmune Diseases: ‘Our Body is Our Biggest Enemy’), or the special issue on autoimmunity featured by an online knowledge zine titled: Krieg im Körper – Das Rätsel der Autoimmunkrankheiten (Lorenz 2014; War within the Body: the Mystery of Autoimmune Diseases).

Such pictures and wordings create imagery prone to causing irritation and even helplessness in affected persons, instead of providing constructive approaches for coping with a life crisis as is frequently caused by an autoimmune disease. In her renowned essay Illness as Metaphor Susan Sontag already warned about these modern disease metaphors, especially in the context of cancerous diseases where war imagery is dominant as well, ascribing them a demoralising effect on patients (Sontag 1978, p. 85).

The fact that figures of speech affect our thoughts and feelings had already been established by Lakoff and Johnson in 1980, starting with the book Metaphors We Live By. Following their argumentation, metaphors are ‘cognitive maps’, organising our thoughts and allowing us to reconstruct our patterns of thought, speech, and action. In Philosophy in the Flesh, Lakoff and Johnson show that metaphors play an important role in structuring our experiences. They have the potential to create new perceptions, motivate actions and organise previous experiences in new relations and contexts (cf. Lakoff/Johnson 1999, p. 72).

Consequently, one of the main intentions of this project is to find new images as cognitive maps to help patients cope with autoimmune diseases.

The American Lupus Foundation speaks of a “cruel mystery” in regard to the autoimmune disease lupus (SLE – systemic lupus erythematosus) because its pathogenesis (cause and development of the disease) is still in the dark of the biomedical model. These yet unresolved mechanisms behind autoimmunity call for new perspectives on the subject.

The transdisciplinary researcher Ed Cohen, who has a long personal history as a patient with Crohn’s disease (an autoimmune condition), therefore suggests approaching this mystery by understanding it as a biophilosophical and not as a biomedical problem in the first place:

I feel more and more certain that the challenge which autoimmunity poses may be more one of natural philosophy than bioscience. That is to say, the problem that autoimmunity represents for certain knowledge may indicate that there is a problem with what we take to be most certain about ourselves ontologically, epistemologically, and biochemically. (Cohen 2004, p. 11)

Taking up Cohen’s proposition, this project aims at creating scope for new meanings within the traditional concepts of autoimmunity and its associated diseases. The objective is to produce individually as well as socioculturally relevant knowledge about the phenomenon through a politically emancipatory science practice based on a biophilosophical research approach.

The motive behind is to provide new, supportive images to help people cope with autoimmune diseases.

The jump necessary to open up these new perspectives was executed by adopting a ‘situated speculation’ according to Halewood (2017). Based on A. N. Whitehead’s speculative philosophy, he proposes a conditioned speculation that takes place “under restrictions”. These restrictions are defined by the – cultural, sociopolitical, philosophical, etc. – ground that forms the basis for the speculative jump, and the quality of the jump is determined by the faith in a world that Halewood describes as a “world-in-the-making” (Halewood 2017, p. 62).

The execution of the speculative jump in the course of this project opened up the perspective on autoimmunity as a variation of the ‘conditio humana’, the human condition, as addressed in the philosophical anthropology by German philosopher and biologist Helmuth Plessner. The basis for the hypothetical jump was provided on the one hand by the immunological discourse on autoimmunity and on the other hand by Plessner’s concept of ‘existential positionality’.

This central notion of his biophilosophical analysis conceives of all living beings as characterised by their positionality. This feature is determined by the way a living thing is organised, and by its relation to its borders. For humans, Plessner identifies a positionality he describes as ‘eccentric’ – ‘exzentrische Positionalität’ (cf. Plessner 1981). Humans, like animals, are centrally organised, via the central nervous system, which differentiates both from plants and their decentralised and open form of organisation. But humans, in contrast to animals, exist in eccentric positionality because of their ability to refer to themselves.

In Helmuth Plessner’s philosophical anthropology, the anthropological difference is marked by this eccentric positionality of man – resulting in a reflexive distance that separates us from ourselves. Plessner describes it as a rupture, defining us as living beings who are not identical to ourselves (cf. Plessner 1983, p. 200). The particular eccentric being is never entirely who he/she is. This explains what Plessner calls “Doppelcharakter”, or respectively “Doppelaspekt” (Plessner 1981, p. 365) – double character, double aspect – of human nature, referring to the gap inside humans as a mark of this quality.

Giorgio Agamben also addresses this gap in his book The Open when he talks about a blank space, a breach inside us, separating man from animal (cf. Agamben 2003, p. 100).

So within Plessner’s concept, our self-reflexivity is distancing us from ourselves; it is this distance, the paradox of human existence, that causes a rupture within us and makes our lives determined by ambiguity.

In reference to this concept of Plessner, I speculate on autoimmunity as being related to this fundamental human ambiguity. I postulate that the rupture within us, marking the anthropological difference, or, in Plessner’s words, our eccentric positionality caused by our self distance, plays a role in autoimmune dynamics. Based on this hypothesis, my research questions are:

a) What is the meaning of autoimmune phenomena in the context of the reflexive self distance of a being existing in ambiguity because of its eccentricity?

b) Can autoimmune diseases be conceptualised as realisations of the rupture, the self-distance, the ambivalence of a life form in eccentric positionality – and what are the specifics of such a concept?

Autoethnography is an approach to research and writing that seeks to describe and systematically analyse personal experience in order to understand cultural experience; it challenges canonical ways of doing research and representing others and treats research as a political, socially-just, socially-conscious act. (Ellis, Adams & Bochner, 2010)

This can be seen in close relation to Plessner’s biophilosophical method and his demand for ‘sehendes Verstehen’ (i.e. sighted or seeing understanding) which is also based on personal experience: “Von der Lebenserfahrung hat es [das Verstehen] auszugehen, zu ihr kehrt es zurück” (Plessner 1982, p. 179) – understanding begins with life experience and returns to it.

Autoethnography was explicitly developed as a critique of Western research traditions – and, very importantly, it stands for the emancipation of the body by moving it to the centre of the academic stage, with all included risks:

Coaxing the body from the shadows of academe and consciously integrating it into the process and production of knowledge requires that we view knowledge in the context of the body from which it is generated. I must be ready to walk the talk of my scholarship by putting my politically marked body on the lines of the printed text. This kind of embodied methodology is […] risky. (Spry 2001, p. 725)

The autoethnographic text emanates from the researcher’s bodily standpoint, a perspective formed by the permanent process of recognition and interpretation of the cultural inscriptions upon the researcher’s body (cf. Spry 2001, p. 711).

In his same-named theory, Hermans considers “both self and culture as dynamic systems located in a field of tension between unity and multiplicity.” He dismisses the idea of an “essential core self” as well as an “essential core culture” (Hermans 2001, p. 275) and follows a decentralised view of both. To explain his theory in a nutshell, he quotes Montaigne:

We are all framed of flaps and patches, and of so shapeless and diverse contexture, that every piece, and every moment plays its part. And there is as much difference found between us and ourselves, as there is between ourselves and others. (Montaigne 1603, pp. 196–197)

As the technique in its application has performative qualities, there is also a connection to Plessner’s first anthropological rule2 of ‘natural artificiality’: Man has to do something to realise (or actualise) a life according to his eccentric existential position. This something is a complement of a not-natural, not-grown kind (ein “Komplement nichtnatürlicher, nichtgewachsener Art”, Plessner 1981, p. 384) that is necessary to create himself. That is why man by nature, because of his form of existence, is artificial (“von Natur, aus Gründen seiner Existenzform künstlich”, ibid.).

This something is crucial in my eyes; it not only covers acts and products of art and culture, it may also be something that is realised physically, by the body itself, as in the case of autoimmunity – something that finally not only affects the body but the entire person, their surroundings, and their existential state.

The EEE-technique is designed as a self-inquiry, a dialogue between different inner voices, as the voice of the distant self (referring to the rupture within us, described by Plessner), expressing an external, historical, socially, politically and/or culturally (in)formed standpoint, and the voice of the ill body, the body affected by the autoimmune disease SLE. Any disease can be seen as a confrontation, a conscious encounter with our eccentric positionality. Tolone describes this relation of eccentricity and illness in his contribution on the significance of Plessner’s theory for a philosophy of medicine as the experience of separation of the two poles ‘Körper’ and ‘Leib’, causing a “disruption of ‘spontaneous’ identity, the disappearance of balance”, and leading to a fragmentation of the person (Tolone 2014, p. 167).

To preclude possible misunderstandings that might easily emerge at this point, it has to be stressed that the EEE-technique is not an enactment of the Descartian mind-body gap; it is not about a situation with the body – the ‘animal body’ – on one side, and the mind/spirit/soul on the other side. On the contrary, it is all about shifting perspectives expressed by switches between different inner voices, between gut feelings and rationalisations, speculation and fact listing, critical comments and poetical expressions, etc. In a nutshell, the whole process can be described as an exercise in embodied diversity within oneself.

The structure of the technique is provided by a set of questions, organised along thematically relevant categories that were derived from existing materials (diary notes, photographs, objects connected to the illness narrative), and summarised with keywords like ‘symptom description’, ‘emotional resonance’, ‘cognitive evaluation’, and ‘meaning ascription’.

An important aspect of the EEE is the involvement of objects (medical aids, masks, souvenirs) and images (photographs, drawings) linked to the personal history of illness. These artefacts (see Fig. 1) are not only used to instigate and guide the narrative along certain motives but also to elicit different self aspects and voices: Grabbing the notebook (i. e., the diary) reinforces the aspect of self-reflexivity, putting on the wolf mask stresses the transformative aspect of the illness; the pill box produces the voice of the patient, the chew bone the animal voice within, and so forth.

To activate the aspect of positionality within the exercises, the first approach was to perform actual transitions, i.e. changes of position in space, by movements from the centre of a marked circle to its periphery and vice versa, and by ascents/descents and jumps to realise vertical transitions.3 But in practice, it soon became clear that this part of the EEE requires a reconsideration, a new approach.

This repositioning process revolved around the question of how to grasp the practical and bodily quality of the theoretical-philosophical characteristic ‘existential positionality’.

As a result of this process, the idea emerged to variegate psychophysical parameters instead of translating Plessner’s category into space; to identify parameters, based on experience, that directly affect the variable self-reflexivity and, subsequently, the variable self distance. Examples of such empiric parameters are states of acute pain and the state of semi-sleep (the phase between sleeping and awakening).

First experiences showed that the variation of these parameters effectively changed the quality and extent of self-reflexivity. Conducting the EEE-technique under the condition of acute pain leads to results that indicate the possibility of an altered existential positionality. Further trials have to be conducted, allowing for a comparison of the inquiry processes’ outcome under different conditions/settings regarding the mentioned psychophysical parameters. The results of these comparisons will provide further insights and determine the ongoing development of the method.

Finally, the protocols of the EEE-performances, including remarks on the respective settings and descriptions of the involved materials (images, objects), are transferred into a lyrical form by means of ‘poetic transcription’.4

This method was introduced by Glesne in 1997, who suggested extracting certain words or parts of sentences from an interview transcript, following thematic or formal criteria, and finally arranging the words in a way that a poem, a poetic form, emerges (Glesne 1997, p. 202). Poetic transcription, as an experimental and creative form, has the goal of contributing to a more open way of research and broadening the horizon of science (Glesne 1997, p. 219). Falkner resumes in regard to poetry as an integral part of scientific work:

When using poetry as/in/for research à la poetic inquiry, I searched at the intersection between scientific and artistic criteria to offer considerations in that shaded middle space: Poetic inquiry may be evaluated on the demonstration of artistic concentration, embodied experience, discovery/surprise, conditionality, narrative truth, and transformation. (Faulkner 2019, p. 663)

Accordingly, the poetic form as a result of this part of the project is intended to enable and foster the perspective on autoimmunity as a variation of the conditio humana, and the specific bodily state related to it as a possible realisation of Plessner’s eccentric positionality.

It searches for new approaches to open the door for an expanded understanding of autoimmune dynamics and to provide productive answers to the progressing autoimmune crisis we are facing today.

Giorgio Agamben, Das Offene. Der Mensch und das Tier (D. Giuriato, Trans.), Frankfurt a. M.: Suhrkamp 2003.

Warwick Anderson/Ian R. Mackay, Intolerant Bodies. A Short History of Autoimmunity, Baltimore: Johns Hopkins University 2014.

Béatrice Boufoy-Bastick, “Auto-Interviewing, Auto-Ethnography and Critical Incident Methodology for Eliciting a Self-Conceptualised Worldview”, Forum: Qualitative Social Research 5(1)/2004. DOI: 10.17169/fqs-5.1.651

Carsten Binsack/Michael Fräntzel (Directors), Wissenschaftsdoku: Mein Körper – mein Feind. Autoimmunerkrankungen auf der Spur [DVD], Mainz: ZDF 2016.

Ed Cohen, “My self as an other: on autoimmunity and ‘other’ paradoxes”, Journal of Medical Ethics; Medical Humanities 30/2004, pp. 7-11.

Paul Ehrlich, The collected papers of Paul Ehrlich. Vol. 2. (F. Himmelweit, ed.). New York: Pergamon 1957.

Carolyn Ellis et al., “Autoethnography: An Overview”, Forum: Qualitative Social Research 12(1)/2010, DOI: 10.17169/fqs-12.1.1589.

Sandra L. Faulkner, Poetic Inquiry: Craft, Method and Practice, London: Routledge ²2019.

Corrine Glesne, “That rare feeling: Re-presenting research through poetic transcription”, Qualitative Inquiry 3/1997, pp. 202-222.

Michael Halewood, “Situated speculation as a constraint on thought”, in: Alex Wilkie et al. (eds.), Speculative Research. The Lure of Possible Futures, London/New York: Routledge 2017, pp. 52-64.

Hubert J. M. Hermans, “The Dialogical Self: Toward a Theory of Personal and Cultural Positioning”, Culture Psychology 7/2001, pp. 243-281. DOI: 10.1177/1354067X0173001

Ilona M. Hilliges, Rat und Hilfe bei Lupus. Alles zur Entstehung und Behandlung der Schmetterlings-Krankheit und anderer Kollagenosen, Stuttgart: Thieme 2001.

Georg Lakoff/Mark Johnson, Philosophy in the Flesh: The Embodied Mind And Its Challenge To Western Thought, New York: Basic Books 1999.

Hans-Martin Lorenz, Krieg im Körper. Das Rätsel der Autoimmun-Krankheiten, URL: https://www.scinexx.de/dossier/krieg-im-koerper, accessed on 27 March 2022.

Lupus Foundation of America, Lupus is a cruel mystery we must all solve together, URL: https://www.lupus.org/understanding-lupus, accessed on 28 March 2022.

Barbara Macek, EEE – Exercises in Existential Eccentricity. Movements, Artefacts, Transitions. Mailberg 2021 (video), URL: https://www.researchcatalogue.net/view/1567054/1567037, accessed on 15 July 2022.

Michel de Montaigne, The essayes: Or, morall, politike and millitarie discourses (J. Florio, Trans.). London: Blount 1603.

Corinna Perrevoort et al., Autoimmunerkrankungen: ‚Unser Körper ist unser größter Feind!‘, URL: https://www.bild.de/ratgeber/gesundheit/autoimmunkrankheit/autoimmun-erkrankungen-wenn-der-koerper-sich-selbst-bekaempft-feind-22021520.bild.html, accessed on 28 March 2022.

Helmuth Plessner, “Die Stufen des Organischen und der Mensch. Einleitung in philosophische Anthropologie”, in: Helmuth Plessner. Gesammelte Schriften, Band IV, Günter Dux et al. (eds.), Frankfurt a. M.: Suhrkamp 1981.

Helmuth Plessner, Mit anderen Augen, Frankfurt a. M.: Suhrkamp 1982.

Helmuth Plessner, “Die Frage nach der Conditio humana”, in: Helmuth Plessner. Conditio humana. Gesammelte Schriften, Band VIII, Günter Dux et al. (eds.), Frankfurt a. M.: Suhrkamp 1983, pp. 136-217.

Lothar Rink et al., Immunologie für Einsteiger. Heidelberg: Spektrum 2012.

Mauricio Rojas et al., “Autoimmunity is a hallmark of post-COVID syndrome”, Journal of Translational Medicine 20(129)/2022, DOI: 10.1186/s12967-022-03328-4

Susan Sontag, Illness as Metaphor, New York: Farrar, Straus & Giroux 1978.

Tami Spry, “Performing autoethnography: An embodied methodological praxis”, Qualitative Inquiry 7(6)/2001, pp. 706-732.

Oreste Tolone, “Plessner’s Theory of Eccentricity. A Contribution to the Philosophy of Medicine”, in: Jos de Mul (ed.), Plessner’s Philosophical Anthropology. Perspectives and Prospects, Amsterdam: Amsterdam University 2014, pp. 163-175.

Nicole Winchester et al., “The intersection of COVID-19 and autoimmunity: What is our current understanding?”, Pathogens and Immunity 6 (1)/2021, pp. 31-54. DOI: 10.20411/pai.v6i1.41

Wilhelm Wundt, “Selbstbeobachtung und innere Wahrnehmung”, in: Philosophische Studien 4, Wilhelm Wundt (ed.), Leipzig: Engelmann 1888, pp. 292–310.

Fig. nr. 1: Barb Macek, Collage of Artefacts. From the series: Souvenirs of my Illness Journey, 2020 © Barb Macek

Suppl. 1: Barb Macek, Selbst in Formation / Self in Formation (excerpt from the poem), 2022.

a)

Lichte Wolkenränder

Die sich in meine Netzhaut einbrennen

Sich selbst entzünden und dauerhaft

Brennen, glosen

Manchmal Fischtränen weinen

Um die Entzündungsreaktion abzumildern

Pathogene Muster aufspüren

Schmerzen von den

Scharfen Kanten der Realität.

b)

Der Akt der Versetzung

Zerschlagung eines Hauptworts in seine Teile

Es summt und Lichtflocken, und dazwischen

Faltet sich die Luft.

Gedanken fassen

Gefühl fassen

Die Erinnerung an TIERE nicht als

Symbolische sondern

Konkret

Fellhaar für Fellhaar

Auge für Auge

Ohr für Ohr

Tier unter Tieren:

Mit Menschen-Distanz

Mit Menschen-Maskierung.

c)

(Im)perfekter Körper

Meditation, Fütterungen

Und die Bestimmung über sich selbst

Als – abwechselnd – Objekt / Subjekt

Als ganze (Selbst-)Versuchsreihe

Umstände, Außenstände, Aufständische

Kräfte jetzt

Die mein Gehirn durchdringen

Die das Selbst in Formation

In Aufstellung bringen

Als (selbst-)revolutionäres

Individuum.

[...]

a)

Clouds with luminous rims

That burn their way into my retina

Igniting themselves and lasting

Burning, smouldering

Crying fish tears at times

To soften the inflammatory response

Tracing pathogenic patterns

Pain of reality’s

Sharp edges.

b)

The act of dislocation

Breaking a noun into its parts

It hums, and light flakes, and between them

The air folds.

Seizing thought

Seizing feeling

Remembering ANIMALS not as

Symbolical but

Tangible

Fur hair by fur hair

Eye by eye

Ear by ear

Animal among animals:

With human-distancing

With human-masking.

c)

(Im)perfect body

Meditation, feedings

And self determination

As – alternating – object / subject

As entire series of (self-)experimentation

Circumstances, outer stances, insurgent

Forces now

That permeate my brain

That set the self

Into formation

As a (self-)revolutionary

Individual.

[…]

English translation by Melanie Sindelar.

© Barb Macek 2023. All rights reserved, including the reproduction of extracts or figures.