Autoimmunity and Affect: Tolerance and Time in Three Narratives


 

 

AI Humanities Research Group. 2024. “Autoimmunities and Affect: Tolerance and Achronic Time 
in Three Narratives.” Catalyst: Feminism, Theory, Technoscience 10 (1): 1–42. 

http://www.catalystjournal.org | ISSN: 2380-3312 

© AI Humanities Research Group, 2024 | Licensed to the Catalyst Project under a Creative 
Commons Attribution Non-Commercial No Derivatives license 

 

                                                                                                                                             

 

 
Autoimmunity and Affect: Tolerance and Time in 
Three Narratives   

 

 

AI Humanities Research Group1  

 
 

Abstract 
 
This essay, co-written by three art and technology humanities scholars from 
standpoints of autoimmune experience, takes up the longstanding critique of 
historical self/non-self models of the immune system to introduce a discussion 
about biopsychosocial and political affect in autoimmune experience of the 2020s. 
They argue that an ethos of tolerance and intolerance, long operative in 
biopolitical strategies of state power (Brown 2009), continues to factor into newer 
21st century models of autoimmunity as biopsychosocial, ecological, distributed, 
and networked response. Drawing provisionally on the danger model (Matzinger 
1994), which posits that immune responses are triggered by the perception of 
threat and not by the presence of “foreign” entities, the authors highlight the 
kernel of negative political affect in the signaling of danger. Drawing on the work 
of Silvan S. Tomkins, they describe, theorize, and interpret the role of sustained 
negative affect signaling, specifically (d)anger, distress, and disgust, in their own 
respective autoimmune experiences, which they describe as unfolding in achronic 
time (Freeman 2010, 126). It is proposed that closer scrutiny is needed for the 
negative affects that shape the infrastructure of (in)tolerance and care that gives 
life to autoimmune symptoms, diagnosis, and treatment experience in the 2020s, 
an era in which post-COVID autoimmune conditions unfold achronically in 
ongoing COVID-19 pandemic time.         
   

Keywords  

autoimmunity, biopolitics, affect, Lyme, Lupus  
 
 



 
Special Section: Autoimmunities in the Wake of COVID-19                                                

 
 

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Introduction 
The immune system, perhaps more than any other bodily system, has long been 
studied as a domain around which the concept of the self is both integral and 
highly contested. The modeling of autoimmunity on the binary of self/other and 
the paradigm of (auto)immune responses as conditional (in)tolerance has been 
subject to criticism and rebuttal for some time.2 Immunologists and philosophers 
of immunology have introduced and debated an array of alternative concepts, 
such as the network, cognitivist, ecological, and danger models. Common to 
these approaches is some notion of cellular agency: the ecological and network 
models see cells as socially interconnected and engaged; the cognitivist sees 
them as entities with perceptual abilities; and in the danger model (Matzinger 
1994), affective signaling is regarded as a tissue-system response to damage. One 
could say that models are just metaphors, but they structure research strategies 
and the culture of treatment.  
 
Tolerance and intolerance, long operative in biopolitical strategies of state power 
(Brown 2009), factor into these immune models, including those that assume a 
decentered network model (after Jerne 1974). (In)tolerance is present in 
contemporary immune discourse, where we propose it to be a normalizing 
anatomopolitics, a biopolitics enacted at the scale of the individual biological 
body.3 Tony Sandset (2021), among others, has introduced the concept of 
necropolitics to the discussion of COVID-19. He proposes that “conditions of slow 
death and necropolitical outcomes are themselves not only the outcomes of a 
form of ‘state of exception’ but rather [occur] through what we can call a ‘state of 
acceptance’…. Necropolitics is often ‘chronic’ and slow, yet its influence on 
people’s lives often comes to the fore when an abrupt crisis emerges such as 
COVID-19” (1411). He makes a case for the importance of understanding tolerance 
as it is enacted through the slow death of acceptance.4 The writer Sarah Manguso, 
describing her experience with Guillain-Barré syndrome, said, “All autoimmune 
diseases invoke the metaphor of suicide. The body destroys itself from the inside” 
(quoted in Anderson and Mackay 2014, 5). Her remark gives voice to the affective 
dimensions of the immune system in the lingering fatalist “mystical trappings” of 
a self/non-self (Silverstein and Rose 1997, 197), a biometaphysical conception that 
inexplicably persists (Pradeu 2012; Pradeu and Carosella 2006) through network 
and open models that figure (auto)immunity as smart and fluidly heterogeneous 
(Jerne 1974; Shi 2020; Varela and Coutinho 1991;), or which characterize immune 
systems as “selfless selves” (Varela 1991). These and other models from newer 
fields such as systems biology have replaced the old self/non-self binary, but 
retain a core aspect of it—what we will call a tolerance binary.5 Newer models such 
as the socially engaged, situated cell, or the shift of focus to danger and the tissue 
system are no less imbricated in the (in)tolerance affective schema than the 
binary (non)self model. As Thomas Pradeu and Edwin Cooper write, “advocating 
that immune responses are multifactorial, complex, and contextual” is all too easy 
(2012). We are especially interested in the danger theory of autoimmunity 



 
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proposed by Polly Matzinger (1994), because it offers a means through which to 
understand the affect system’s role. Matzinger (2002) has proposed that what 
triggers an immune response is not “foreignness,” but the release of “alarm 
signals” by damaged tissues. We propose that we grasp the affective dimensions 
of autoimmunity’s “signals” over time. This model is explicit in its attribution of 
negative affect to cells: damage triggers danger signals, or a danger signal 
response mechanism is somehow tripped in the absence of damage. This is 
theorized as a biopsychosocial communication systems problem. It has generated 
research into danger and its relationship to brain function (Cserr, Harling‐Berg, 
and Knopf 1992; Louveau et al. 2015; Matzinger and Kamala 2011). Immunologist 
Tirumalai Kamala (n.d. [2015]) states, “What held up the discovery of brain 
lymphatics is the thrall of immune privilege,” the idea that certain sites of the 
mammalian body, such as the eyes, the central nervous system, and the testicles, 
will tolerate antigens without launching an immune response. Previously it was 
believed the brain was among the privileged “tolerant” systems.  
 
We perceive the systems problem of immune systems communication of 
“danger,” a highly psychobiosocial concept, to be in the domain of affect study. 
Following Silvan S. Tomkins’s general understanding of affect as a response, 
feelings as a response with insight, and emotion as a response with insight and 
historical reflection (Tomkins Institute, n.d.), we try, in this paper, to capture 
affect and/as (in)tolerance in self-experience of responses to autoimmune 
experience in diagnosis and treatment. We want to better understand the 
relationship between the biopolitical, anatomopolitical, and necropolitical 
dimensions of (dis)regulation and normalization of living in a state of self-
destruction as an autologous telos, enacted through successors to the self/non-
self model. We propose that most contemporary autoimmunity models, while 
dispensing with the older paradigm of self/non-self, retain the older models’ ethos 
of affective (in)tolerance as normative.6 Colin Koopman (2018, 108) reminds us 
that Foucault distinguished between the casting out of lepers at the end of the 
Middle Ages and the inclusion of plague victims in early disciplinary 
modernization. The latter “is not exclusion but quarantine”—not a matter of 
driving individuals out but of “establishing and fixing them, of giving them their 
own place, of assigning places and of defining presences and subdivided 
presences” (Foucault 2003, 46). We see this occurring in the contemporary 
COVID-19 moment of the 2020s at the anatomopolitical level of the 
understanding of the (auto)immune system, especially in illness experience and in 
treatment encounters, as they play out in their affective “post-COVID” 
dimensions.  
 
The immune system has been variously characterized as an intersectional system 
or network since Niels K. Jerne (1974). It is presently described in terms such as 
distributed, flexible, adaptive, dynamic, chimeric, intersectional, and open, with 
attention to the role of the tissue system that makes up organs (Matzinger and 



 
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Kamala 2011). But these models retain the consternation of “horror autotoxicus,” 
a doctrine introduced by Paul Ehrlich (1900), who proposed that a normal 
(anti)body has powers of recognition, contrivances that allow the immune system 
to be smart, to know its enemies—and to have the sense not to turn against its 
own kind. In this model of (auto)immune action, the state and its citizens are the 
model for the body and its immune system, which has the political insight to 
recognize external agents as threat (Martin 1994). Late in his life, Jacques Derrida 
(2003) reversed this formula, interpreting 9/11 as the rogue action of a state 
system that produced its own death by training foreign agents who then 
performed suicidal acts of terror inside its borders.  His account modeled the relay 
between the necropolitical and the anatomopolitical levels in a modern, twenty-
first-century autoimmune state. Below we track the reverse flow, narrating how 
treatment responses produce immune system experiences of relayed biopolitical 
affect (Protevi 2009, 115–40) in which (in)tolerance figures centrally in an ethos of 
inclusion and care.  
 
We emphasize that immune modeling is not a mere problem of clinical metaphors 
(Melander 1993; Tauber 1994, 2018). Models project the shape of practice to come 
through treatment and disease experience. Expression is complexly 
biopsychosocial, making language and comportment inextricable from disease 
etiology and experience. More work is needed about the production of traffic 
between immune system biopolitics, autoimmune necropolitics, and 
anatomopolitics in the embodied and clinical experience of diagnoses, from the 
situated standpoint of patient experience. We therefore track flows of affect over 
time in the situated contexts of tolerating autoimmune diagnosis experience, 
regarding autoimmunity as a queer art of failure (Halberstam 2011). Following 
from the work of Mel Y. Chen (2007, 2011) and others who have insisted on 
theorizing the place of affect, diagnosis, institutional classification, and the state 
in health and ability experience, we pursue auto-biopsychosocial interpretations 
that aim to grasp the depth of distress, disgust, and anger in the production of 
immune system pathology, and in our socialization into a culture of tolerance—in 
which we learn to put up with our autoimmune experience in a networked, 
heterogeneous, transient state of biopsychosocial being. We seek to understand 
how the immune system is produced in affective relays among the biopolitical, 
the necropolitical, and the anatomopolitical scales of experience in and around 
tolerance, a primary aspect of the ethos of care and inclusion that drives the 
contemporary moment.     
 
At the center of our concern is the temporality of the production of contemporary 
biopsychosocial (in)tolerance of danger, a term that has anger at its core and is 
closely associated with another characteristic of our time: chronic distress. We ask 
how and where exactly the relays between self and other and tolerance and 
intolerance are produced in the body and its biopsychosocial mangle of 
autoimmunity over time, in acute, chronic, and post-illness states of autoimmune 



 
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disease. How necropolitical regulatory (in)tolerance of disease and disability 
connects to the normalization of autoimmune individuals through toxic affective 
exchanges, and how theories of autoimmunity update in order to stay the same 
(Chun 2016), are questions we share. Addressing these questions has required, for 
us, detailed tracking of timelines. How, we wondered, did Manguso come to feel 
her condition to be awash in suicidal feelings, and why did this make us angry? By 
this, we do not mean to ask how she, or we, came to hold socially imposed bad 
feelings, but how did our conditions come to be a mangle of experience that 
makes banal the model of biological, psychological, and social self-(in)tolerance 
as a deeply felt condition understood to be classic, timeless (chronic), and 
definitive of autoimmunity. Addressing our timelines in some detail below, we try 
to better understand how the autoimmune life we put up with is modeled and 
produced through a structure that sustains negative affective registers, and to 
discern how this experience is normalized through a treatment framework that 
operates at different scales, from bio- to anatomo- to necropolitical.  
 
Wendy Brown (2008), in Regulating Aversion, reminds us that to tolerate is not to 
affirm but to conditionally allow and make room for what is unwanted or deviant. 
Tolerance is not an affect. Nor it is just a strategic, provisional comportment. It is a 
boundary condition in which the self is produced at a border that may be the 
elastic tissue of the skin (Anzieu 1989) or the shifting territories modeled on the 
redrawn face of a map or a diagnostic category (Bowker and Star 1999). Brown 
traces mobilizations of tolerance that circulate and perpetuate rather than 
alleviate racism, homophobia, and ethnic hatred in domestic practices of sexual 
and racial regulation and in international strategies of imperialism. Tolerance, as a 
strategy of governmentality, requires the production of normalization at the scale 
of the individual subject. To tolerate is to suffer. It is a sustained negative affective 
state, with its own infrastructure. In this framework, tolerance is acquired in the 
response to an entity recognized as the other. That recognition of an entity as 
other is a precondition of tolerance. Intolerance may be exerted against the 
invading other but also against the self , as in the psychological processes 
differently theorized as “internalization” by psychiatrists Frantz Fanon (1952) and 
Alvin Poussaint (1966). The internalization of necropolitical (in)tolerance as a slow 
state of discernment of other and negotiating acceptance in relationship to an 
internal entity that has triggered danger “rightly” or not ensures its status as a 
chronic oscillating condition of judgment, which requires a subject and object. 
Amelia Jones quotes Antonio Damasio, who states that our experiences “tend to 
have a consistent perspective, as if there were indeed an owner and knower for 
most, though not all, [psychic] contents.” He continues:  “I imagine this 
perspective to be rooted in a relatively stable, endlessly repeated biological state. 
The source of the stability is the predominantly invariant structure and operation 
of the organism, and the slowly evolving elements of autobiographical data” 
(Jones 2009, 59, quoting Damasio (1995, 238).  
 



 
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But what happens to the bio-logic of the “autobiographical data” when it is self-
eliminating? Following the self/non-self model, one would say there is a 
breakdown of the autologic, and someone must step in with care. The self as 
always already constituted through misrecognition, fracture, and 
interdependence has been a cornerstone of analytic thought for decades, 
exposing the fantasy of autonomy that links immune system theory to the other 
AI (artificial intelligence) with which it rose to prominence.7 Polly Matzinger, chief 
of the US National Institute of Allergy and Infectious Disease’s T-Cell Tolerance 
and Memory Section, has insisted that not only is “foreignness” not the important 
feature that triggers an immune response in the individual (2002, 302); the 
immune system does not care about the self. Its drive is simply (or, more 
complexly) to protect against danger (Matzinger 1994). Proclaiming 
abandonment of the self model, Matzinger has continued to argue that the field 
should move off its perpetual question, “what causes a break in self-tolerance?” 
and focus instead on how—in what moments, in what systems in the body, in 
what agents, in what ways—the immune system identifies danger. Matzinger 
(2022) notes the co-agential function of bodily tissues in (auto)immune activity 
(Matzinger and Kamala 2011).8 Her proposal aligns with the STS dictum that 
agents, including technology and like language systems, do not have 
intentionality, except when they become durable and compelling tools in specific 
actions (Suchman 1987). Intentionality is the cognitive map of plans, not the 
affective, messy process of situated actions. It also reinforces a view of the 
(immune) system as open, its elements non-autonomous. “Auto” immune 
responses are in fact complexly intersectional, involving multiple actors inside and 
outside the body. Pleasure and danger (Vance 1984) can be mitigated, like when 
the toy licked by the child in Chen’s (2011) account of lead toxicity is removed 
from the mouth of the child and sucked into a biopsychosocial public health 
treatment plan, recalled as a danger in an environment where anything can be 
found to have always already been toxic. Immune logic projects the affordances 
and risks of the shifting signifier onto all things. Medical normalization is pinged 
back to the biosocial model of environmental regulation and tolerance, with the 
toy subject to regulation, and tolerance identified as a boundary, a threshold, in 
the child.  
 
The self model and the tolerance paradigm add up to a suicide plan inflicted on 
subjects held in contempt for insisting on feeling, and on describing the open 
ambiguity of their experience, in ways that are inadequately modeled by research 
and treatment protocols that insist on the co-production of body and 
environment (yet another binary). Kimberle Crenshaw’s (1991) concept of 
intersectionality has been widely used to account for the multiplicity of forms and 
registers of discrimination that coincide in lived experience, describing “where 
power interlocks and intersects” (Crenshaw 2017) in order to understand the 
multifaceted experiences of marginalized subjects, in particular Black women. In 
his doctrine of “horror autotoxicus,” Ehrlich (1900) famously described antibodies 



 
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and antigens as existing in a bespoke “lock-and-key” relationship that he modeled 
in a sketch (Figure 1). It is important to note that the antibody (“antitoxin”) is not 
the key but the lock. The lock is drawn as a black fish with an open mouth that 
seeks out specific toxins, the keys (protruding from the cell) for which its orifice is 
uniquely molded. Like Chen’s child, the antitoxin is driven by a desire to 
incorporate a danger into itself. 
 

 

Figure 1. Paul Ehrlich, the lock-and-key principle behind immunoreaction. Drawing reproduced as 
Plate 7 between pages 437 and 438 of Ehrlich, 1900. Source: Wellcome Collection, 
https://wellcomecollection.org/works/eprmw6yc/items?canvas=30. 
Alt text: A black and white print of a drawing of fours oval shaped blobs with spikes. They are 
surrounded by floating black tweezer-like pincers aiming for the spikes. On the past blob, seven 
pincers have attached themselves to the spikes.   
 
This sketch is followed by a second drawing that demonstrates a more ambiguous 
interaction. There are a few interlocking pairs of antitoxins and antigens. Many 
antigens float free, and numerous antitoxins find no match.  
   

 

Figure 2. Drawing reproduced as Plate 8 between pages 437 and 438 of Ehrlich, 1900.  
Alt text: A black and white print of a drawing of the tops of two oval cell-blobs, one with pincers 
(antitoxins) aiming for the spikes (antigens) that surround it on the cell, some finding and some 
missing a lock-and-key fit. 

 

Ehrlich notes that in the blood of animals, there is the presence of excess, 
“normal” bodies analogous to the antibody. “The formation of these antitoxins 
lacks all of the characteristics of purposeful, intelligently directed, remarkable 

https://wellcomecollection.org/works/eprmw6yc/items?canvas=30


 
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process” (Ehrlich 1900, 440). So where is the intelligence in the system? Matching 
is characterized as an innate contrivance, a feeling—perhaps something like 
desire. Immunity, he speculates, may be part of a more open system, influenced 
by diet and responsive to tissue changes. He speculates on these factors’ 
contribution to variations in reaction to infection intragroup, among members of 
“the same race and species” (441).   
 
“The problem with identity politics,” Crenshaw wrote in 1991, “is not that it fails to 
transcend difference, as some critics charge, but rather the opposite—that it 
frequently conflates or ignores intragroup difference” (Crenshaw 1991, 1242, 
emphasis added). Variation and ambiguity in the transition of antigens from 
healthy to pathological and the sheer range and volume of antigens and 
antibodies in the immune system undo both the foreign-self dichotomy and the 
tolerance paradigm. In Ehrlich’s brief speculation about diet and tissue (which we 
regard as the interiorized skin of affect transmission), we see a glimmer of 
recognition of intragroup variation in the possible situational action of multiple 
systems and diet on immune response, casting it as open and socially produced. 
But racialized and sexualized mechanisms of (in)tolerance through a self-other 
schema remain firmly in place: while there is internal diversity, there are unique 
sets of oppositions that ensure discrimination within that system.  
 
Later, immunology will shift from type to process: What makes a good cell go 
bad? The self/other model remains tacitly active in attitude and regard of patients 
even among some researchers and physicians who have moved on to other more 
dynamic and open, contemporary models of immunity. Multiple factors propel 
the self/tolerance paradigm, including the requirement that a diagnosis be fixed 
to qualify for treatment. Matzinger (2022) asks for more adherence to the danger 
model, which we interpret here through autobiographies of distress, disgust, and 
anger (double d-anger), moving off the analysis of what specifically signals 
“danger,” and onto the specifics of the affective spectrum triggered. Affects are, 
of course, experienced intersubjectively, relayed between self and caregivers, 
friends, family members, and colleagues entangled in the chronicity of ugly 
feelings (Ngai 2009). How ugly feelings and ugly symptoms are mutually 
constitutive over time, especially when they surprise and alarm us in their 
presentation as ambiguous and chimeric, is of great interest to us. It is the 
convoluted narrative force of relay and repetition between affect and symptom 
on face, skin, and tissue that we seek to understand in our interpretation of this 
danger model through experience over time.    
 
How do we tolerate the affects associated with autoimmune experience? A 1985 
study of affect’s social and biological dimensions defines “affect tolerance” as “the 
ability to respond to a stimulus which would ordinarily be expected to evoke 
affects by the subjective experiencing of feelings, rather than by an apparent non-
reaction response or a discharge pattern of response such as impulsive behavior, 



 
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somatic dysfunction, or personality disorganization” (Sashin 1985, 175). In this 
account three variables influence the ability of a subject to tolerate affect: “the 
capacity to fantasize, the state of the inner container, and the capacity to 
verbalize affect” (175). Here we shift our attention to time and tissues in self-
narratives of experience with autoimmune conditions and diagnoses, offering to 
readers what we hope to be useful verbalizations of relays of affect (in)tolerance 
informed by the insight of feeling and the retrospective historicity of emotion. We 
each have responded to our respective experiences with explanatory tactics that 
aim not to preclude or pathologize impulsive behavior, somatic dysfunction, and 
personality disorganization—ours or our caregivers. These are reasonable 
responses to the biopsychosocial mangle of autoimmunity. Elizabeth Freeman’s 
work on chronicity (2010) and bodily endurance over time (2019) helps us to 
describe the experience of the specific course of (not) tolerating a distributed 
affective state, distress, in a case eventually diagnosed as lupus, followed by 
accounts of anger-rage in the experience of Lyme disease and its diagnosis, and a 
the volley of affect between caregiver and self in a misdiagnosis of anti-DPPX 
syndrome around a more likely case of parasitic bacterial infection with Bartonella 
or Borrelia burgdorferi bacteria. These conditions are understood as adjacent to 
the range of autoimmune and immune deficiency conditions now grouped under 
post-COVID-19 autoimmune conditions, aka long COVID.9 We do not discuss 
COVID or post-COVID conditions specifically. Rather, we describe self-
experiences of and with autoimmune conditions that inform the context in which 
long COVID is emerging.  
 
The 1989 redefinition of AIDS as a chronic illness, anthropologist Jean Scandlyn 
(2000) reminds us, was contingent on access to antiretroviral therapy, which has 
been vastly uneven, with Western countries experiencing the highest degree of 
stability in treatment access. Lucas Pereira de Melo et al. (2020) note that in 
Brazil, the state is the primary agent in guaranteeing drug access, and thus in 
securing the experience of HIV and/or AIDS as chronic rather than acute 
conditions by people who are HIV positive. They use the phrase “fragile 
chronicity” to address the experience of having HIV/AIDS over time marked by 
state-controlled access and withdrawal of access to treatment drugs. Among 
members of an online group they observed, the chronic illness state was 
experienced as a normalizing state that was in fact fragile, interrupted by periods 
of acute disease when the state medical apparatus experienced periods of 
upheaval and treatment drugs were not available for a time. To become a chronic 
sufferer again was to reassume a normal state. In addition to experiencing a new, 
intermittent “order of life” on treatment drugs, members of the group 
experienced the “suffering and fear of HIV/AIDS as emotions from a distant 
history” during those gaps when “there was no political, social and 
biotechnological support” (Pereira de Melo et al. 2020).  
 



 
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In our account, we approach time over which we received unstable, misapplied, or 
reluctant diagnosis and treatment, with medical consternation and antagonism 
among the responses to our symptoms and shared distress, disgust, and anger a 
feature of our care. We elaborate these experiences to reflexively trace the 
chronicity of distress, (d)anger-rage, and disgust, horror, and humiliation. As we 
passed through acute affect tempered by the insight of chronic feeling, we 
struggled to find ways to be tolerated and not shunned by our caregivers, friends, 
and family, and we fought to tolerate our own disintegrating self-control to 
achieve a survivable state of normalcy. These are, we acknowledge, accounts of 
white middle class fragility—illness experienced with the affordances of income, 
health insurance, and white skin, all of which we did not lose despite age, 
sexuality, and ability destabilizing our attempts to live a normal life. 
Destabilization occurred in part through challenges to our mental health status 
and our capacity for self-determination, couched in the normalizing language of 
care.10 Scandlyn states that whereas “the battle against acute illness is dramatic 
and heroic, the management of chronic illness, despite its complexity, is banal” 
(2000). We are reminded of Lauren Berlant’s concept of “crisis ordinariness” (2011, 
10). What makes something negative banal is tolerance. Any condition can be 
normalized. But the ordinariness of being chronically sick with indeterminate 
cause and no endgame requires an especially complicated and exhausting degree 
of adaptation, accommodation, and masquerade to survive the sustained state of 
acute panic, the intense multidirectional volleying of disgust (received, self-
directed, mirrored), and to forestall open intolerance and rejection. (D)anger must 
be normalized. This requires self-control of affect—immunity to the triggers of 
distress, disgust, and rage. There are multiple affects for stigma, a form that exists 
in a lock-and-key relationship with tolerance of danger, which we regard as a 
condensation of difference and anger. Chronicity driven by panic about self-
contamination demands a performance of self-containment that we hope to 
chronicle here in its achronicity, a concept we explain below.  
 
We each have heard something like this: “We don’t know much about this 
condition and how or when it began for you. We are not even sure if you have it. 
There are no definitive markers to confirm its existence before, or now. But you 
may experience its symptoms all your life, intermittently.” The face that offers 
these words is sometimes performing the composure of care, sometimes 
struggling to hide bemusement or vague disgust, indicated by a tug of the mouth 
toward a grimace Silvan S. Tomkins (2008b, 22) in a reaction has called dissmell, a 
drive-like response that protects the infant from (d)angerous substances.  Often 
the face mouthing dissmell is skeptical, looking at a computer screen as it reacts 
to us. Sometimes the words come through an online message, and there is no 
showing of face, but you can hear the dissmell reaction that keeps the caregiver 
safe from the danger we pose. Along the way, in these accounts, we touch on 
visibility, masking, and the process of maintenance of appearance and behaviors 
of care in managing suspected or diagnosed chronic autoimmune disease. We 



 
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discuss some of our tactics for avoiding internalization of the stigma associated 
with the appearance of these signs and symptoms in our caregivers.   
 
Our use of the term achronical relates to this unevenness, and also to the ways in 
which this autoimmune experience of dissmell toward us is produced as banal, 
normal, not worthy of notice. Acronycal is a term derived from ákronux (nightfall) 
to describe the contrapuntal temporality of a star that rises while the sun sets. It is 
the star that is “acronycal” and not the sun, whose time is the standard against 
which the star’s weak power is observed. A distinctive characteristic of acronycity 
is that the star is always present, but noticed only when the power of the sun has 
weakened enough for the weak light of the star to become visible. The star is the 
sun’s other. The certainty of the sun’s relative strength and position in the next 
cycle makes it remain the dominant measure against which acronycal time is 
registered. We propose autoimmunity may be usefully understood as achronical 
(Freeman 2010), meaning not outside of time or timeless but remotely sensible, as 
a past and future condition. A primary disease, its history, and its sequelae in 
compromised immunity or autoimmune disease are interconstitutive and co-
defining.   
 
Chronicity demands a performance of self-containment that we hope to chronicle 
here in its unevenness, its achronicity. Our accounts focus on affective 
experiences of symptoms associated with lupus, Lyme disease, and anti-DPPX 
syndrome. We propose, overall, a critical and reflexive engagement with 
autoimmune and deficiency syndromes’ achronicity across subject positions. The 
model of consecutive time in which acute disease is followed by chronic post-
disease syndrome does not capture this uneven experience adequately.  
 
The affect we begin with is distress. The verb distress descends from dis (apart) 
and strengere (to draw tight). It is an archaism that describes the act of stretching 
apart. In law, the noun describes a claim made over the goods of another to 
satisfy a debt. Use of distress to describe anguish, grief, and pain, dating back to 
the 1300s, begs the question of who or what performs the stretching and seizing, 
and how the term came to privilege not the act of taking away, but the emotional 
state of the subject on whom tearing and loss is inflicted. Health, for example, is 
the transacted object taken away from the body, but we do not use the noun form 
of “distress” to name that process of separation. Rather, “distress” becomes the 
sequela of this loss—it describes the subsequent state of the loser. To put this 
another way, when the body is in ill health, control over the body is understood to 
have been taken away from the subject and put in the hands of the illness state, 
which assumes power over the afflicted person. Distress is the feeling they are left 
with. The distress-anguish spectrum is among the affective processes described 
by Tomkins (2008a), and he characterizes it as tending to exist in a prolonged, 
high-steady state (289–323), as compared to, say, anger, which is more short-
fused (323). Distress, at the low end of the distress-anguish spectrum, tends to be 



 
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maintained and tolerated by the subject for a very long time. The APA Dictionary 
of Psychology (2023) defines distress as a type of stress that results from being 
overwhelmed by negative life conditions, resulting in maladaptive behaviors.  
 
In the following sections, we oscillate between “I” and “we” as we shift to our 
personal narratives, approaching them individually and together.   
 

Narrative #1: The Unhealing Wound: Distress and 
Eustress 
I start with a narrative about a wound. The art historian Amelia Jones (2009), in an 
extensive treatment of wounds in performance-based art practice, points out that 
wounds are powerful signifiers that are both agential and enacted. They announce 
injury and, when self-inflicted by the artist, as they are in the works by Ron Athey 
and Catherine Opie discussed by Jones, they serve a discursive purpose. In the 
cases she discusses, one purpose is to insist that the person in pain maintains 
control over enunciation of experience—that pain is not debilitating but, rather, 
productive of a register and politics of pleasure. In this context, the adage “time 
heals all wounds” takes on a different meaning. Standardly, this phrase assigns 
agency and intentionality to time in the process of resolving the emotional 
distress of a loss, typically of another person from one’s life. Progressive, linear 
time is understood to have a curative, healing power. In this adage, a physical 
wound is a metaphor for an emotional injury, for hurt feelings. The traumatic 
cause (a breakup, a death) becomes a memory, like a scar, that times blunts and 
erases. But in performance-based self-inflicted pain, control over the chronicity of 
distress is in the hands of the subject who experiences the injury and bears the 
wound. The performance makes clear that a physical wound and wounded 
feelings are not simply analogous but are intersectional, co-productive. A physical 
wound is a trigger of feelings of distress. Emotional distress produces somatic 
outcomes: a rash, the marks of self-cutting. The case of masochistic performance 
art demonstrates the problematic of agency and control in the experience of 
distress, and underscores the reality of the wound as not simply an outcome of 
injury but a process in the negotiation of relational agency and power. The 
distressed subject is always negotiating with time and in this sense has the ability 
to bring out its achronicity. 
 
Freeman (2016) proposes that chronic illness belies narrative, with chronicity 
assuming a kind of shapelessness in comparison to linear time. In this first 
account, we together unpack the chronicity of distress associated with a physical 
event that was an outcome of chronic illness that failed to resolve, becoming 
unending—or, rather, becoming repetitive, with multiple beginnings and endings. 
The narrative arc of hemostasis, inflammation, proliferation, and 
remodeling/repair unfolded only to begin again before repair is complete. An 
acute wound that refuses to stay healed is not exactly constant, not exactly 



 
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chronic. A chronic wound, one learns by experience, perseverates—has its own 
cyclical rhythms that are acronycal, irrupting like a rising star just when you 
thought the infection cycle was resolving. 
 
Throughout the first decade of the 2000s, I began developing lesions without 
having been noticeably injured. These wounds appeared with increasing 
frequency and severity. Each refused to fully heal. One wound of about three 
inches in diameter that had formed on the back of my left thigh around 2009 
remained unhealed for two years. “Healing” is a process referred to often in health 
discourse. Unhele is an obsolete term meaning to uncover or reveal that I revive 
here to describe the process of a pathology bent on revealing itself achronically. It 
is not such a simple matter as “non-healing,” for the wound did heal itself—only to 
unheal again and again. In this section below, I establish the different patterns of 
chronicity that became interlaced as the wound took on a rhythm of its own, as it 
drained and re-established itself, and as medical visits became a routine 
recurrence, punctuating the routines of work life and adding stress and anxiety as 
dressing the wound—washing and bandaging it and taking different courses of 
antibiotics in hopes of making it heal—became a regular part of dressing for work. 
The life of the wound was accommodated in patterns of comportment and 
appearance to mitigate the stress of achronical temporality: having to speak in 
public with an open wound, while in pain.    
 
I ignored the wound for about six months, watching it grow with mounting 
anxiety, as I attended to the more urgent crisis of my pet’s fatal illness. When I 
finally sought treatment for myself, I was seen by a nurse practitioner in my 
primary care practice. They drained the lesion in-office, treating it as a cyst or boil. 
However, they raised questions about the nature of the wound, speculating about 
its behavior and appearance. It did not act like a cyst or a boil, they said. It lacked 
the characteristic sac or wall of a cyst; the sinus tract was too deep for a boil. 
Although the draining brought temporary relief, the wound did not permanently 
heal, but instead became more inflamed. The area became larger and more 
swollen, abscessing and bursting only to then re-establish itself as an open sore 
rather than closing up into a scar.  
 
I began to measure time by the wound. Sometimes the cycle took days. Other 
times it completed itself over the course of hours. I went into this process with a 
tacit understanding that wounds heal over time. The life of a lesion follows a 
pattern that ends in closure of the tear. Even an infected wound will open and 
drain, close, and become a scab. Perhaps it will produce a scar that gradually 
fades: time heals all wounds, after all. What I was not prepared for, however, 
beyond the delay of healing, was the erratic recurrence of the lesion’s life and 
death, as it stretched apart and drained only to re-form in a more volatile state, 
with days or hours of acute fulminant activity. There was no finality, no resolution 
of the acute state, only its inevitable yet unpredictable repetition. Wound time 



 
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was achronical—not exactly shapeless, but apparent only when compared to the 
regulating time of the imagined normal wound.   
 
This account may summon feelings of disgust. But what was most prominent for 
me was my own sense of distress faced with a painful bodily state sure to be 
received with disgust if revealed in public. Our experience has been that 
physicians who are not specialists in feelings don’t know where to look when 
faced with feelings of distress they find ugly rather than those that engender 
tender feelings of compassion and care. Many look away, a response that may be 
an indication of disgust, dissmell, a mirroring of our presumed shame, or they 
simply express mild annoyance in the form of a distancing brusque 
professionalism. Feelings interfere with the path to treatment of the body. They 
need to be put to the side. We each have been referred to psychological or 
psychiatric resources to help with our intrusive affective states, imagining this 
referral is a caring act that will address a perceived need for supplying us with 
strategies of self-management geared toward normalization.       
 
Distress mounted as the experience of repeating an acute process over and over, 
at different unpredictable rates, became a chronic state, or rather a state of 
achronicity. I came to recognize draining and diminishment as stages of a 
deception, after which, at some point—unpredictably but within a short period of 
time—the lesion would not heal but instead “unheled” (uncovered itself), over and 
over.  
 
Chronic suggests constancy, perpetuity, continuity, unending sameness. Words 
like eruptive, disruptive, respite, and remission hint at the ways in which repeated 
bouts of acute symptoms, remission, and recurrence are the fat of chronic 
disease, morphing its basic process, and triggering anticipation and dread in the 
subject who tries to maintain control over its erratic course. Distress becomes 
normalized. It becomes productive, takes action. One of the actions I took was to 
reassign agency over the process from myself to the lesion. Whereas the nurse 
practitioner had drained the wound at my request, now it drained itself, according 
to its own will and clock. I was beginning to realize it was a chronic thing that 
might never succumb to the normative linear time of health, healing, and cure. I 
started to worry about the consequences of living with this thing that would 
always be infected, that might become septic, that might never go away. And so 
my own sense of agency in the process diminished. I was at the mercy of an 
unhealed lesion. It was a danger to me. Areas of tissue and skin cells had begun to 
go rogue.  
 
I had no idea what chronic condition I “had” that was causing this perpetual 
wound-state. I continued to seek help from my medical caregivers, hoping for 
treatment and answers. My primary care doctor recommended waiting, giving the 
lesion more time to heal. However, my dermatologist began to associate a 



 
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different narrative with my symptoms: he diagnosed me with the inflammatory 
skin disease hidradenitis suppurativa (HS). In the following months he put me on 
repeated courses of various oral antibiotics, a standard (and generally ineffective) 
treatment for HS. None of these helped. My primary care doctor did not agree 
with the HS diagnosis and persisted with the narrative of an eventual fading of 
symptoms. And so I walked around for two years with a wound that was 
perpetually open, in various stages of healing and unhealing.   
 
I became very inventive and resourceful in devising ways to bandage and 
medicate the wound, accommodating it into everyday life by improving methods 
to cover the thing that insisted on uncovering itself. My dermatologist eventually 
suggested surgical removal, and although my primary doctor insisted on waiting, I 
finally elected for this surgery in 2011. A critical aspect of successful elimination of 
an HS lesion is the removal of the sinus tract feeding the lesion. The surgeon 
reported removing a tract as long as my finger, and I thought the saga was finally 
over. But within two weeks the abscess returned. This is a common outcome of 
hidradenitis suppurativa surgeries, since the subcutaneous sinus tracts that feed 
their chronicity can be insidious—difficult to trace, hard to remove in total, and 
extensive, sometimes even opening into body cavities and internal organs.  
 
This one long-term lesion finally did resolve itself after some novel treatment by 
an HS specialist. But its capricious pathology disclosed yet another unheled 
condition associated with supreme achronicity and ever-shifting, ever-
unpredictable symptomology and acute phases. The HS diagnosis implicated 
more sinister factors entangled with the chronic skin disorder, namely systemic 
lupus erythematosus (SLE). Cause was nested within cause. In medical parlance 
co-occurrence has replaced comorbidity. In the nineteenth century, the use of 
morbid to describe disease states was transferred onto negative affect (morbid 
feelings). With co-occurrence, diseases are characterized as companions that co-
exist (a)chronically, like the bright sun and the weak star. HS often co-occurs with 
such chronic and incurable autoimmune diseases as lupus and rheumatoid 
arthritis.   
 
Lupus has ever-changing manifestations that can impact any part of the body. 
Being female, my profile is consistent with lupus’s characteristic gender 
associations: women constitute roughly 90 percent of the people diagnosed with 
systemic lupus erythematosus and lupus nephritis (LN), a condition associated 
with renal disease. My diagnosis in my early fifties was unusual because the 
disease typically emerges in adolescence or early adulthood. I am also an outlier 
because of my race. I am white. Systemic lupus erythematosus prevalence for 
African American women is double that for white women, and both forms of the 
disease occur with far greater frequency among Native American and Alaska 
Native, Asian/Pacific Islander, and Latinx women than among white women. 
Candace Feldman et al. describe the various intersectional influences suspected of 



 
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contributing to the onset and development of systemic lupus erythematosus and 
lupus nephritis via the “complex interplay of genetic, hormonal, and 
environmental factors” that likely contribute to their “variations by gender, 
race/ethnicity, and income level” (2013, 760). Among these are workplace and 
environmental exposures to toxins, smoking, and psychosocial stress. I suspect 
certain of these, particularly past domestic violence, workplace stress, and PTSD, 
as factors in my disease, and those of many women across these demographic 
sectors.  
 
The living pattern of achronicity embedded in such intersecting risk factors 
amplifies the experience of intolerance and discrimination faced by women whose 
also experience poverty or low income, racial and ethnic marginalization, 
precarious housing and work conditions, and domestic or sexual violence and 
abuse. The psychosocial and embodied distress associated with erratic, 
unpredictable temporality of autoimmune disease compounds the achronicity of 
precarious housing, employment, financial and personal resources, and 
healthcare access.  
 
Caregiver disgust reduces the human to an imagined being without volition. 
Disease terminology for “lupus” was taken from the Latin word for wolf by 
Rogerius Frugardi (1180), a surgeon who thought his patient’s facial rash 
resembled an animal’s bite. This displacement of the auto-agency of an 
autoimmune attack onto an undomesticated predator is rooted in the ascription 
of immune agency to a foreign body. It makes us rethink the legal “debt” distress 
scenario in terms of what is taken away: in this case, the patient’s agency over 
their body’s own actions against itself. Predation by the body’s own immune 
system is a terrifying thing to experience, impeding the exercise of a person’s will 
against the body’s own internal defense mechanisms. Enter masochistic 
performance art, the action of self-injury made plain under circumstances that 
insist on being on top in the narration of pleasure and (d)anger in chronic time.  
 
Again the news of my condition was broken with the tragic statement (and 
affective comportment) conveying that time and symptomatology exceed my 
control: like HS, lupus has no cure. The doctor expressed uncertainty about time—
my lupus might have been in preliminary stages, or maybe its onset was already 
underway. This uncertainty impacted my predictive thinking and planning about 
the future, deeply altering my self-perception and sense of my life’s past, and of 
its overall temporality. Receiving the diagnosis that one has a chronic, incurable 
disease immediately launches an acute emotional crisis of remembering in which 
one’s sense of time is reconfigured, becoming operant on a lifelong scale that 
slides in all directions at once. One begins to edit and re-edit one’s history with 
each new causal thesis in mind. Looking backward, I remembered joint pain in my 
hips in my late twenties. I wondered whether it was related to lupus. I thought 
about my childhood. I do not recall having the classic red-cheek butterfly rash 



 
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associated with lupus, but I nonetheless searched my memory for predictive signs. 
My frequent bouts of respiratory infections and the fact that when I got sick I fell 
ill very rapidly and severely all took on new meaning.  
 
The present, past, and future are all implicated in this tectonic shift as diagnosis 
with a chronic illness is triggers the affect of surprise, which startles memory into 
the emotional process of re-examining past and present experiences and future 
expectations. An uncertain new landscape in which this condition will be lived 
achronically in the months, years, and decades ahead. Lupus frequently attacks 
and destroys the kidneys; would I end up in dialysis, and if so, when? Was I in 
danger of needing a kidney transplant at some future date? Anticipation and 
dread amplify distress, prompting responses (such as the pressure to recall past 
symptoms) that, rather than alleviating stress, lead one to dwell in the achronic, 
relative temporality of reflective emotion in which autoimmune conditions make 
themselves visible in the temporality of an entire planet, a past and future life 
visible at a distance, in a curious weak light. The lupus diagnosis required me to 
maintain a schedule of dermatology and rheumatology checks—visual scans of 
my skin and joints, X-rays, blood, and urine testing—that I would describe as 
chronic, in that its pattern was clear as day—it would be a lifelong, predictable 
schedule driven by hopes for improvement and cycles of remission and 
recurrence, not cure.  
 
Rewriting the narrative of one’s life story in ways that make sense and provide a 
clear path forward driven by one’s memories and desires becomes a way of 
reasserting control over time. Chronicity, as opposed to achronicity, is found in 
the desire for causality and early signs when in fact there may be no such factors 
to unearth, nothing to see that could have made life turn out otherwise. 
Achronicity describes the speculative and intercutting nature of self-historicizing 
experienced as an art of fragmentation, disjuncture, and bricolage—the activated 
distress of seizing the story and tearing it apart yourself. This approach is 
triggered when labs and medical professionals deliver a life sentence with the 
cool, clinical detachment that often characterizes doctor-patient 
communications. My account is not a disavowal or refusal of either temporality, 
but an insistence on the importance of tolerating (a)chronicity—or, rather, 
recognizing (a)chronicity as a mechanism of (in)tolerance. 
 
Recognizing the highly varied assortment of rheumatoid skin, joint, and 
connective tissue diseases described as co-occurring—intersectional if not 
interconstitutive—strengthens the case for using achronicity as the relevant term 
for the real time of autoimmune diseases. One has such conditions perpetually. As 
the acute crises resulting in the primary diagnosis and those that follow gives way 
to the more general task of integrating disease awareness and accommodation 
into one’s tactics of self-care and time, mental activities like those I experienced 
started to focus on piecing together a new, broken narrative that follows an 



 
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acronycal arc, finding meaning in those things that appear in a weak light at the 
endpoints of knowledge.  
 
The construction of autoimmunity experience and life stories as a diagnosis 
response frequently incorporates scars of past experiences largely attributed not 
to somatic conditions but to emotional and psychological trauma, and states of 
mental suffering such as depression, PTSD, and “stress.” Stress, and specifically 
the stress of needing to go on, to speak in public—the event associated with the 
“positive” stress engendered by “welcome” life challenges—is another factor here. 
To work, for all three of us, is to act and to speak in public, to teach, which is also 
to survive (it is how we make our income and receive health insurance). The 
thought of speaking in public while in distress, and while having evidence of a 
condition that might be seen as disgusting was, of course, profoundly distressing.  
 
Hans Selye, a near contemporary of Tomkins, rendered stress binary, coupling 
distress with “eustress,” a neologism that neutralized stress, rendering it quite 
simply a “nonspecific response of a body to a demand” (1976, 137). This concept 
reflects the affordances of banal anatomopolitics for capitalism. Eustress, 
associated in its medical literature with better survival, is classified as a positive 
response type generated by “positive” life stressors. The stresses of life in 
industrial capitalism become, quite simply, motivational forces. In the Tomkins 
affect system, there is no such positive valence for stress, which is always prefixed 
by dis (apart). The felt quality of the negative affect that is distress is first 
described by Tomkins through anecdotes about the performed behavior in which 
the feeling makes itself seen and heard: crying, with and without tears, is 
presented through examples that are, by and large, in response to loss (2008, 313–
30). But for Selye, stress has its positive potential—indeed, he warned, “complete 
freedom from stress is death!” (Selye 1976, 137).  
 
We return to our question about agency and causality in autoimmune syndromes, 
and to the act of stretching apart, understanding it as not so easily attached to the 
primary disease of which the autoimmune syndrome is understood to be a sequel. 
We might consider appropriating eustress ironically, as a hallmark of the 
neoliberal normalization of crisis in chronic pandemic time. Eustress is a useful 
concept for characterizing accommodation, by which we mean not simply 
learning to live with our autoimmune syndromes, but finding ways to perform (to 
act out, to speak in public), in order to provoke accommodation and 
normalization of our immune-system divergence in the social world of people 
with AI syndromes, which, with the COVID-era recognition of post-COVID 
conditions, will now be a vast medical demographic about which little is known.  
 
Eustress is a normalizing concept that suggests there is value in performing 
positive thinking while in distress: we may respond behaviorally to distress, 
interpreting it as a motivational force. Trying to avoid income and advancement 



 
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lost while on disability by characterizing your condition as a prompt to work 
harder is a foundation of the supercrip phenomenon (Garland-Thomson 2002; 
Schalk 2016) in which you strive harder and do better because of your condition. 
The moment of diagnosis and the naming of the disease or condition of 
disablement are often held up as significant breakthroughs in this behavioral 
reversal of outlook from negative to positive. A diagnosis startles you, makes you 
react. You charge ahead toward a cure or accommodations: positive steps, one 
might say.  
 
But with autoimmune conditions, there is always the awareness that the diagnosis 
does not provide a clear treatment pathway or a predictable future. This opens 
the door to a web of potentialities that are both certain and random: co-
occurrences will crop up, making themselves known through the stepped-up 
schedule of testing or through compounding symptoms; self-care habits similarly 
are added and become part of everyday life, and the reality that they will not end 
with any diagnosis sets in. Layered upon this are the existing chronic patterns and 
the baffling complexity of acute recurrences that eventually become both 
predictable and erratic in their path and duration. Characterizing distress as 
“eustress” is classic cruel optimism (Berlant 2011) that is not so much felt or 
internalized but performed strategically. You learn to say “I’m better now” when 
people ask. It is an avoidance mechanism that allows you to bypass the 
humiliation of having your condition tolerated (Tomkins 2008a, 435). You learn to 
accept that some friends and colleagues will start to view you as the person who 
has become a flake, a no-show, or an obsessive. Their skeptical but 
accommodating expressions are another facet of an immune response, at once a 
symptom and a trigger. Horror autotoxicus rears its ugly head not in your body, 
but in the social space where they perform their affect in suppressed form, as in 
the uneasy expression on the face that masks the automatic physical disgust 
reaction that is like vomiting a toxin (what Tomkins, in 2008b, 22, calls dissmell). 
A classic immune response on the part of an interlocutor is to feel uneasy, 
annoyed, or, as we have described, mildly disgusted—an expression that may not 
be shown to you directly, but may be relayed through friends and colleagues, 
after your condition is discussed with care and concern, and their kindly words are 
conveyed back to you, perhaps in an HR meeting about work performance. They 
want to help but they are tired of your story and want you to tell them an ending 
you do not have to give—and they want to help you find it if you are unable to do 
so yourself, perhaps through a special office set up to perform this care. Because 
surely if you don’t have a cure or a treatment regimen that keeps you stable after 
all this time, then you didn’t help yourself, or perhaps you have simply become 
obsessed with your symptoms, attached to repeating them—this must be 
psychopathology, and for this there are also treatment providers at hand to help 
you, even in the workplace.  
 



 
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To put this in Tomkins’s terms, avoiding your expression of affect can serve to 
deny the press of aggression in your interlocutor’s response, be it concern or 
consternation. We note that Tomkins spent some years of his career as an 
industrial psychologist, evaluating the psychological states of both managers and 
workers on the factory floor, specifically focusing on weeding out those who 
posed a danger to other workers or to themselves in the workplace. Like some of 
the men Tomkins described in his account of humiliation, you might learn that it is 
safer to put your head down and quietly do your job (Tomkins 2008a, 555–61). It is 
not a coincidence that his passage on humiliation draws from the organizational 
psychology of Bertram P. Karon (1964), whose highly problematic study of Black 
factory workers in the US south relied on a projective test devised by Tomkins, 
and whose ideas were an important source material for Tomkins’s own ideas 
about Black affect (Tomkins 2008a, 561). “If you cannot control your anger in a 
world where you are constantly being provoked, and where the direct expression 
of anger brings inevitable disasters,” wrote Karon, then “you are lost” (1964, 
166).   
 
Normalizing distress as eustress as a behavioral tactic has the ironic affordance of 
making you stop saying there is something wrong (which is not to stop thinking 
and feeling it). The social benefit of performing a positive affect toward your own 
immune response, tactically, is to receive a positive social immune response in 
return. You are less likely to provoke pity, consternation, and anger. Doing this 
becomes easier when you can normalize asking for accommodations in your 
workplace based on a written diagnosis, rather than having to show and tell how 
you feel. The diagnosis is an account of yourself from a doctor, someone who is 
only passingly familiar with your life history, and whose response to the affective 
crisis the diagnosis provokes can seem indurate, even dismissive. But using that 
physician’s immune response of writing a note as an institutional act of regulatory 
compliance that makes you one of a biosocial class of people who are disabled can 
earn you a pass at qualifying for individualized accommodation. We characterize 
these approaches as facets of tolerance, the product of a “healthy” immune 
system exchange, according to the model of the immune-system-as-networked-
self, which is compelled to graciously accept institutional tolerance and care to 
survive.   
 
We underscore the irony of this approach, and highlight its basis in a 1960s 
psychology of liberalism. The immune system is profoundly a site of alienation in 
this scenario. It is here that we get angry at health discourse for taking the 
modern tenet of the immune-system self to the extreme of attributing 
intentionality, motivation, and the innate ability to identify (d)anger to a system 
they admit they do not even understand, and which is rarely understood to 
incorporate affect in its social context—except as a tolerance or helping 
mechanism in which accommodation is reduced to regulatory instrumental 
(in)tolerance strategies in the service of the heterogenous system. We move on to 



 
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our second account, in which Tomkins’s affective spectrum of anger-rage features 
prominently as something that must be thusly contained.   
 

Narrative #2: Lyme Time: Anger-Rage 
Lyme disease made me angry. Really angry, with senseless bouts of rage that 
recurred for months on end. Or, to put it more accurately, what made me angry 
was not Lyme disease, but Bartonella, an intracellular parasite that possibly 
entered my bloodstream through a bite that I never felt or saw, from a tick that I 
never felt or saw. The facticity of my Bartonella infection and its role in my 
experience of symptoms associated with Lyme disease and post-Lyme 
autoimmune syndrome is something that my doctors confirm well into this 
experience. Lyme disease screening tests are in fact blood tests that look for and 
measure antibodies against bacteria. Like lupus, Lyme has no definitive test.  
 
Bartonella and Borrelia are genera of bacteria carried by any number of flies, ticks, 
mites, fleas, and small animals that serve as hosts to these insects. They are 
associated with various diseases: Bartonellosis, cat scratch disease, and Lyme. 
While not classified as an autoimmune condition in itself, Bartonella is understood 
to cause an infection that is part of the immunological spectrum of post-Lyme 
syndrome.11 In my case, a Bartonella infection produced a state of mind that I 
didn’t imagine possible, with episodes of pure rage towards anything and 
everything, with no cause at all that I can identify, beyond this biochemical factor 
of an infection discovered well into my year of rage.  
 
In the months before the COVID pandemic, I began to lose weight. My body 
ached, and I was spiking fevers and contracting various influenzas in the middle of 
summer, out of sync with their peak seasons. My joints were inflamed, the 
swelling and pain of the inflammation impairing my mobility. I could no longer lift 
my t-shirt above my shoulders. I experienced migraines, nausea, and the sick spell 
of an insomnia that keeps you at two hours of sleep maximum in any given 
twenty-four-hour period. There was a tightness in my throat, a response that 
much later would be diagnosed as mast cell activation syndrome, a condition in 
which white blood cells in connective tissue are overactive in their release of 
inflammatory mediators, causing severe allergy symptoms. Foods and beverages I 
normally tolerated caused my throat to constrict. This, along with the nausea, 
made eating a major challenge and a very real risk. 
 
I also experienced bouts of anger. It would seem logical to say that my anger was 
provoked by my physical state—that I was angry about the unfairness of 
becoming so chronically impaired. But it was not, and I was not. In any case, there 
was no space to think about the cause. The anger was there, along with these 
other symptoms, pure in its abstract form. In writing about anger, Tomkins 
(2008b) speaks of “reasons” (a word he puts in quotes) as paradoxical, 
coincidental causes of anger. If circumstances were related to my anger, they 



 
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were experienced as coincidental to it, simply co-occurring with it. They were no 
more a cause of my anger than they were a product of it. The reader may 
rightfully ask, how do you know this? My response is that, at this point in time, the 
evidence points to Bartonella as the common causal factor, and to anger as a part 
of the syndrome that comprises the Lyme to post- or chronic Lyme spectrum. This 
is the conclusion I came to over the years that followed acute infection. Cognitive 
conditions are now established as possible sequelae of Lyme disease, with the 
term Lyme neuroborreliosis entering the medical literature with increasing 
regularity with respect to acute disease (regarded as treatable in early stages), but 
approached more generally with skepticism with respect to “nonspecific” and 
post-acute symptoms such as chronic pain, fatigue, difficulty concentrating, and 
emotional volatility (Rauer et al. 2018).12 
 
My experience of anger in the acute time of this experience was as a pure affect 
state in which I did not experience insight (feeling) or reflection over past or future 
times of similar experiences (emotion). It was indiscriminate—against everyone 
and everything in its path. It had no intentionality, only coincidental targets. 
Tomkins (1981, 448) has written that cognition without affect is weak but affect 
without cognition is blind. His comment is striking because it associates affect 
with power, and cognition with ethical deliberation and feeling. My account 
demonstrates the continuity of chronic as chronic, and as an indiscriminate 
immune action. Response would be the wrong word, as there was no apparent 
trigger. This was a cognitive state that was not particularly psychosocial. The 
brain is somatic, and chemical impacts, and their temporality, are poorly 
recognized and understood. And yet the disgust, horror, fear, and shame with 
which I and those around me responded to my anger was very much psychosocial, 
evoking the obsolete model of horror autotoxicus (Ehrlich 1900). Anger is an 
unexamined component of the longstanding immune system self/other model. 
The self is understood not simply to feel disgust at itself, but to target aspects of 
interiority and attack them indiscriminately. That is anger.       
 
Tomkins wrote, “Distress is the affect of suffering, making of the world a vale of 
tears…But anger is problematic above all other negative affects for its social 
consequences…Of all the negative affects it is the least likely to remain under the 
skin” (2008b, 687). An entire volume of Affect, Imagery, Consciousness is devoted 
to anger and fear.13 In my episodes of anger, I was ready to strike at those closest 
to me, loved ones and friends and family—people with whom I felt safe. There was 
no clear trigger or limit that I could feel at the onset of each episode. Anger would 
emerge, full-force and ready to pounce on whoever was near. And here I reference 
Tomkins on joy to say that I think part of me came to enjoy the swell of energy 
that accompanied this anger. These outbursts offered a brief suspension of an 
otherwise rotting feeling, providing a social bond, albeit one that was not so joyful 
for my patient interlocutors.  
 



 
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I didn’t notice my behavioral changes at first. After demanding a Lyme test and 
receiving a diagnosis via a positive blood test, an infectious disease specialist at a 
well-regarded New York hospital began a first try at treating me with doxycycline. 
The two-tier Lyme blood tests check for the presence of antibodies that respond 
to, among other things, the bacteria that cause Lyme disease. Availability of the 
test is mixed, depending on the willingness of the healthcare provider to entertain 
the possibility of Lyme disease in the absence of physical signs, such as a bite 
(recall the imagined animal bite sign on the face of the lupus sufferer). Often tests 
will not be administered if there is no telltale tick bite or characteristic rash. On 
the matter of tests, Marvin Fritzler et al. (2021) explain that some autoimmune 
disease tests are “offered as ‘Research Use Only (RUO),’ some as ‘Laboratory 
Developed Tests (LDT),’ some enter Health Technology Assessment (HTA) 
pathways, while others are relegated to a ‘death valley’ of autoantibody discovery 
and become ‘orphan’ autoantibodies. Those that achieve regulatory approval are 
further threatened by the business world’s ‘Darwinian Sea of Survival.’” Lyme 
tests belong to the latter category, with the Center for Disease Control’s 2021 
guidelines on testing and diagnosis making clear the pervasive skepticism of test 
results as definitive indications of disease compounding the general reticence of 
medical care providers to agree to administer the test without physical evidence 
of a bite.  
 
I took the potent antibiotic offered to me for twenty-one days. In retrospect I 
know this to have been a woefully inadequate and misguided treatment for my 
infection, particularly late-stage or symptom-onset, as Lyme literate medical 
practitioners have been arguing for years (see, e.g., Embers et al. 2017). A year 
later, after symptoms had not abated and under the care of a naturopath, I then 
began a series of treatments with Chinese skullcap, Japanese knotweed, 
cryptolepis, homeopathic antibiotics that would begin my real attempt at 
recovery. Lyme disease is transmitted by spirochetal bacteria, and spirochetes are 
very hard to kill. Other spirochetal diseases include syphilis, called the great 
imitator due to the wide array of ailments that present in each patient. That 
nickname now belongs to Lyme.  
 
A reaction in the body is produced when antibiotic treatment is potent enough to 
induce the die-off of these corkscrew-shaped bacteria, generating a storm of 
endotoxin-like products into the bloodstream. Named after Karl Herxheimer, one 
of the dermatologists who observed this reaction in patients who were given 
mercury to treat syphilis, herx reactions are a massive rejection response that can 
last hours or days, though my experience suggests their symptoms can have a 
much longer duration. The drug triggers the body into a disgust-performance of 
expulsion. Herx reactions are a performance of the immune self expelling the 
enemy.   
 



 
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This performance is heightened by cognitive changes. Occasionally, spirochetes 
make their way across the blood-brain barrier. This has been shown to be a 
possible cause of severe insomnia and mood disturbances, as has the Bartonella 
bacteria itself. Thus, the person under treatment for Lyme is at double risk of a 
period of sepsis and related abstract, non-provoked episodes of emotional 
instability. Mine leaned toward rage. 
 
One night in particular made this instability and its abstract form quite clear. On 
this occasion I experienced what I would describe as a manic episode out of the 
blue. It started with a pay-per-view boxing match between a YouTube star and a 
former world champ. I felt anger mounting as I watched that match. That anger, 
directed both at the sport of boxing and its reduction of the fight to mere social 
media spectacle, was overpowering and truly bizarre. I had been neither a fan nor 
a critic of boxing before. I am not really sure why I tuned in. But there I was, 
consuming the match and finding my anger ascending, singularly settling on the 
match as my coincidental “cause” simply because it was there. This anger came to 
visit most evenings for the next year, when it would be directed at whatever and 
whoever happened to be co-present with me. Just as, in Tomkins’s narrative of 
distress, the infant does not know “why” they are crying, or that it might be 
stopped, or how to stop it, so my anger unfolded as an abstract condition of my 
disease. Confronted with a deep and enduring challenge that could not be 
mitigated, I had no immunity to anguish. I developed a new personality 
component, and violent action ensued. 
 
During the course of Lyme treatment, I moved from an apartment on the east 
coast to my childhood home, where I lived with my parents. This was not an 
unusual transition for my demographic: young adults pursuing higher education. 
The slightest disagreements in view or perceived slights would become the 
coincident cause of my outburst of rage. Thus I behaved, mostly in the evenings, 
with my parents, family, and friends—those closest to me who met me with 
unconditional love. In the throes of anger, I felt as if I was kicking down the gates 
of hell when in reality I’d done absolutely foolish things—stomped my foot 
through a styrofoam board on the floor, for example, gaining a severely sprained 
ankle that lasted six weeks. The anger had me red hot and looking for an opening 
out of my infected body, which I experienced psychologically as decaying, 
rotting—and which I struggled to stomp to life through whatever target for 
displaying my anger was closest at hand. This was exhausting, and it simply 
wasn’t “me.” But it was a primary survival mode through months of reactions I 
associated, in retrospect, with prolonged herxing and the cognitive impact of the 
Bartonella infection.  
 
I understand my anger and my bacterial load to have worked in concert, though 
perhaps inversely. While herxing, I felt every nerve ending in my body at once. 
When the herxing was at its peak, I would become so exhausted from the 



 
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unending inflammation and internal fire control as to have no energy left for 
feeling. Then, as the inflammation died down, it was rage that came back, in full 
force, replacing a wave of fear that preceded it. The relationship of fear to anger 
in immune system rage should not be discounted. The feelings during these 
episodes were of constant alarm, and everyone became an enemy I needed to 
fight. It made me feel alive, following days with a dull and monotonous routine of 
meds, rest, and ice, to fight. Anger fleshes out the inadequacies of the spirit and 
the perceived world. When herxing was linked to fear and disgust, leaving me 
immobilized on the couch, tightly wound into a fetal position as I shed toxins and 
drowned in nausea, anger swooped in with my body’s high-frequency trading 
mechanisms, capitalizing on my arbitrage in mood to supercharge my endorphins. 
What a corrupt economy of the body, I think now. Both states were affectively 
impoverished, offering too much or too little motivation to feel the affect. The co-
occurrence of herxing and anger deserves consideration beyond the idea that 
herxing is causal and anger reactive. Herxing in/as anger is a concept worth 
examining beyond the frameworks of analogy and co-occurrence.    
 
After some time spent ricocheting between these states, from lead-bound to hot 
air, my faculties for feeling, the state after pure affect, began to step up. First 
came the activation of childish pride, in the form of megalomaniac self-
proclamations: a last ditch effort at narcissistic vanity from my exhausted mind. I 
felt righteous about my anger. I had just gone through all of this suffering from 
illness, day after day submerged in miasmas of medical literature, litanies of 
medical procedures that I had to show up for and monitor and track, to show my 
progress. The rage began to have intentionality. It was now directed at doctors, 
healthcare systems, and insurance companies that made every act an effort in 
overtime. My body’s efforts had resulted in outcomes. Lyme disease is an invisible 
illness. Rage made it visible. What symptoms are rendered manifest and 
believable before the medical establishment is a constant negotiation. They are 
conditions for a communal rage that falls and is received unevenly across 
racialized, gendered, and socioeconomic lines. One discriminatory theory that 
skews diagnosis is that affluent households are regarded as being at greater 
exposure risk for Lyme due to their location in suburbs or periphery areas closer to 
forested lands and the ticks that inhabit them, tilting research sample populations 
and credibility towards those that are white and wealthy. Doctors are often not 
trained to distinguish the telltale erythema migrans “bull’s-eye rash,” an early-
stage indicator of a Lyme infection, on patients with darker skin tones, leading to 
disproportionate late-stage progression and complications of the disease with its 
myriad of affects in people with darker skin. 
 
After the period of herxing, I was glad to have killed off the Bartonella, and to be 
able to focus on rest and recovery rather than managing active disease. I can’t 
remember any specific instance where the tipping point of a relatively normal day 
suddenly switched into rage mode for the first time, and just the same I don’t 



 
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remember when anger’s unyielding grip let go. What does remain is the memory 
of a searing vision of having something, anything, in your crosshairs, a recall of the 
unrelenting agitation that caused me to chase people from rooms, and a desire to 
not be that person again. This comes very close to Tomkins’s description of the 
person who experiences loss having had no prior script for successfully 
negotiating a severe stress through the iceberg that is their mass structure, their 
memory bank of distress (2008a, 330–31).   
 
To accept that my Lyme disease had given way to a “post” or “chronic” 
syndrome—that certain symptoms may very well be with me for the rest of my 
life, and to have reached a point of accomplishment by having put the most acute 
phase of recovery behind me, opened a deep speculative hole of “what ifs.” 
Reflection on experience (emotion) was a stress trigger to be avoided. As rage 
gave way to shame, I repeatedly realized that the only support I had had come 
from my family and my community, many of them people with autoimmune 
illnesses with whom I’d shared experimental treatment anecdotes and medical 
timelines online and while hooked up to IV units together in the second waiting 
room, that room beyond the front desk, where we, with our weakened immune 
systems, were kept well apart from other people waiting for COVID testing and 
treatment. If distress is a process of tearing apart, then we can apply this term to 
the separation of people with long COVID from those of us who carry other 
designated or adjacent, overlapping autoimmune and impaired immunity 
conditions for some time, and who have come to terms with achronicity and its 
affective cycles. At the very least, the cognitive data on post-COVID conditions 
suggests that learning from Lyme holds value for people with long COVID. The 
terrible irony is that whereas long COVID is widely accepted as a diagnostic term, 
even as it is poorly understood, long Lyme remains subject to skepticism, medical 
disparagement, and humiliation.  
 

Narrative #3: Anti-DPPX: Disgust and Humiliation 
My house was a sanctuary during the first pandemic spring. House wrens took up 
residence outside the window in a nook where I had set up my Zoom teaching 
office. I worked in view of their nest as eggs hatched and fledglings were fed. 
When the birds left the nest, I opened the window wide to let in the warm spring 
air. That was not all I let in. Tiny insects were now crawling on the papers on my 
work table. Occasionally I swiped one off my leg or keyboard as I ignored the 
problem for a day or two, trying to meet a deadline. But then one of my dogs, who 
slept by my feet in the nook, began to cry. Elderly and having lost the motor 
capacity to scratch, he struggled to relieve what appeared to be an agonizing itch. 
I spent time on the floor with him, trying to ease his discomfort. Within days, I too 
experienced a terrible crawling sensation and awoke one day to find my body 
covered in bites. Bed bugs, disgusting, I thought as I made an appointment with 
my doctor and proceeded to have my house treated with pesticides, wondering 



 
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how this could have happened despite having no guests or travel for three 
months.   
 
I was terribly concerned about my pets and my own health, but I also felt no small 
degree of disgust and embarrassment about my body and my home. An inspector 
from a fumigation company asked me to raise my shirt and show him my bites 
before agreeing to treat my environment. But even after I had followed all the 
treatment protocols to for my pets, my home, and my body, the dog continued to 
scratch and cry and my bites and the rash escalated, covering my legs, arms, and 
torso, and reaching even my face and hands. I simultaneously developed a 
mysterious fine motor tremor and a gastrointestinal infection that left me 
dehydrated and weak. The early lesions appeared not to be healing. With the 
continuing bites, which occurred even in the absence of visible evidence of source, 
I experienced a distressing sensation on my skin that reached epic proportions at 
night, leaving me in anguish that was amplified by the heightened stress induced 
by the steroids prescribed to bring down my immune response.  
 
After initial treatments with permethrin, a common treatment for the bird mites 
my doctor had assumed were the culprits, had failed, I was referred me to a 
dermatologist, a new doctor who saw me in office during pandemic months when 
most patients were seen online. In the first visit, the dermatologist also assessed 
my rash as an immunological reaction to bird mite bites and prescribed a new 
dose of permethrin and various ointments to quell the itch. When I returned 
uncured in a follow-up, the dermatologist had me seen first by their resident, who 
gave me a cursory examination and left the room to deliver a verbal report to the 
dermatologist. The dermatologist then entered the exam room, announcing as 
they walked in that they were surprised to see me back. I should have been cured 
by the treatment I’d been prescribed. The student’s assessment, they explained, 
followed a pattern they often saw: a case of actual infestation and immune 
response to bites is followed by delusional parasitosis, a psychological disorder in 
which people who undergo a parasitic infestation believe they continue to be 
attacked after the crisis is over. They immediately referred me to a neurologist. 
This startled me. Whereas in the previous visit they had examined me, provided a 
diagnosis of insect bites and prescribed treatment, now they appeared annoyed 
and disgusted. They spoke in a manner that was strained, and which I perceived to 
be both patronizing and imperious as they struggled to explain the psychological 
pattern of behavior they “often saw in other patients.” Standing as far from me as 
was possible in the small exam room, their face assumed a comportment of mild 
contempt, an affect that Tomkins describes, in his third volume, as a combination 
of dissmell, the protective comportment of spitting out something toxic, and 
anger (Tomkins 2008b, 22). Whereas before the dermatologist was interested and 
caring, invested in providing a cure, now, when the cure had not worked, they 
acted annoyed and dismissive, and spat out words invalidating my symptoms, 



 
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including the physical ones. They insisted the many bites, including those in the 
middle of my back where I could not reach, must in fact be self-inflicted wounds.  
 
Adam Frank and Elizabeth Wilson (2021, chapter 6) remind us that for Tomkins, 
whereas shame is the affect of sociality, contempt is the affect of hierarchization. 
They quote Tomkins: “contempt strengthens the boundaries and barriers 
between individuals and groups and is the instrument par excellence for the 
preservation of hierarchical, caste and class relationships” (Tomkins 2008b, 216). I 
recall feeling a vague sense of fear in response to the doctor’s obvious annoyance 
verging on anger and disgust at my ongoing physical state. If they could not help 
but spit out my experience, how would I get treatment? Their response was,  in 
turn, a danger to me. Now it was my turn to feel defensively angry. When I 
objected that they had not even so much as examined me, and asked how they 
could levy a psychiatric diagnosis without an examination of the skin evidence I 
was there to show them, a dermatologist, to assess, they raised their chin and left 
their post near the still open door, approached my body where I was sitting on the 
examining table, and told me to open my examination gown. As I held open the 
garment, they tilted their head back in the classic posture of dissmell and, without 
touching me, wrinkled their nose, pointed, and gestured to the resident to take a 
few biopsies at this and that spot. Explaining to me that they were conceding to a 
biopsy and testing to humor me (they expected no evidence of arthropod toxins 
would be detected by the lab, they restated), they then left the room without 
further word. Clearly they were sick of me.   
 
What was abundantly clear was that the dermatologist was disgusted, or more 
accurately dissmelled, by my unhealed flesh. My heightened state of anxiety, my 
ragged sleepless face, and my newly gaunt body seemed to trigger in them a kind 
of expulsive anger that I had brought a danger upon myself through delusional 
thinking and self-attack. My anxiety and my disgusting body, I insisted, were not 
the product of psychopathology, I did not have the mechanical means to produce 
these lesions—but they did not agree. I was confounded by their danger response.  
 
Writing about the biosocial, Frank and Wilson (2021) note that displaced anger 
(which we read as danger, difference plus anger) confounds all parties. Confound 
means both surprised and mixed up. My anxiety was experienced as displaced by 
a doctor who was certain I was in fact cured of a heightened immune response to 
insect bites and was now self-inflicting wounds due to elevated stress. Startle is a 
reset button, electrical—it makes things happen. Like laughter and rage, it is 
contagious. But what happens when the startle button is held down for too long? 
While I waited for the outcome of the punch biopsy, the circle of confounded 
feelings grew. I saw the neurologist to whom the dermatologist had referred me. 
As incensed as I was that a dermatologist would deign to offer a psychological 
diagnosis, based on a verbal report of the resident and without examination no 
less, I figured no harm would come from following through. A psychological 



 
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disorder would have been welcome, in fact. Imagining this problem would have 
been far better than the reality of having to address a disgusting and recalcitrant 
physical cause.  
 
The neurologist was, like the dermatologist, new to the clinic. Their affect was 
that of interest, which I appreciated greatly, responding in kind to their ideas and 
answering all of their questions. After some motor tests and a short interview, 
they offered, with great excitement, that they believed I may have a rare 
autoimmune condition, anti-DPPX encephalitis. When I met their statement with 
a blank stare, they offered a list of criteria, most of which I met (tremor, GI 
disturbance)—except for one hallmark sign: mental disturbance. They then 
offered, with mounting excitement, a description of a 2016 film based on a novel 
about this rare neurological syndrome. I would need a spinal tap to confirm, of 
course. But the decisive factor to justify that test, they said, was proving that my 
bites were self-inflicted, the result of a delusional state of mind.  
 
At about this time I lifted my shirt and held out my arms, not for the first time, and 
asked the neurologist to simply take a look at the many little wounds. How could 
anyone produce this configuration of inflamed bites by self-infliction? Surely they 
did not think I was subjecting my body to hundreds of tiny puncture wounds, each 
forming with the same general shape and development of inflammation and (by 
this time) scarring pattern. They avoided the question, commenting with an 
expression of care that people did strange things in states of mental instability. If 
it turned out that I did have anti-DPPX syndrome, this would be an important case 
for their practice; the condition was still regarded as rare. 
 
I was okay with this pursuit. The neurologist was clearly sharp. If I had this rare 
condition, I wanted to know. But in the week that followed, they hounded me 
with notes on my university medical center’s app, probing for evidence of my 
(in)sanity. Their excitement was acute. They asked for contact with my friends 
and family members to confirm their hypothesis. I mentioned that I was in 
pandemic isolation and therefore not in contact with many people. I suggested we 
wait for the pending pathology report on the punch biopsies as a source that 
would provide them with the needed proof that my wounds were no self-inflicted, 
but they brushed it off, saying the dermatologist was certain the pathology report 
would be negative. They became quite insistent, adding to the sense of distress 
and anxiety I was already experiencing from the bites, exacerbated no doubt by 
the prednisone.  
 
At the end of this grueling week, I received a phone call from the dermatologist. 
I’m very sorry, they said. The diagnosis of delusional parasitosis was wrong. Your 
pathology reports are consistent with arthropod bites. At this point I found this 
result to be great news, as I was no longer feeling sanguine about the spinal tap 
the neurologist had scheduled for me, based on them now clearly mistaken 



 
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diagnosis of a rare autoimmune encephalitis. I asked how to proceed. “Get an 
exterminator and clean your house,” they advised before terminating the call.  
 
Tests that followed with a GI specialist confirmed an E. coli and, later, a small 
intestinal bacterial overgrowth (SIBO) infection. Denied further diagnosis (such as 
a Lyme test, which could have revealed a possible Bartonella or Borrelia infection), 
I embarked on a regimen of environmental, dietary, and pharmaceutical 
treatments, following the advice of members of a group I’d met online composed 
of people undergoing similar circumstances. The range of issues and outlooks in 
this group was broad, and I followed what I would describe as the most skeptical 
and conservative path, resolving the array of problems, including the infection 
and the immune system reaction, over many months. My assumption, not proven 
because my doctors refused to order the necessary blood tests, is that I 
contracted a bacterial infection from bites from the mites that entered my home 
through the opened window after the departure of the house wrens from the nest 
outside. Having regularly handled and removed abandoned nests before with no 
ill effects, I surmised that the lowered immunity of my sick and elderly dog, and 
my own immune system being compromised by the dual infections, left us 
vulnerable to an insect that is, after all, everywhere outdoors.  
 
The experience triggered distress, disgust, shame, humiliation, fear, anxiety, 
anger, dissmell, and—here is the organizing principle—interest. What got me 
through this experience and allowed me to come through on the other side 
without offing myself, a feeling shared by my colleagues here, by Manguso, and 
perhaps by others reading this who are dealing with something that causes 
immunological torment and upheaval with no end in sight, is interest in the 
unfolding of medical and self-treatment as I joined a support group and addressed 
the conditions, environmental and bodily, through the guidance of others who 
have been through the same ordeal. Without this shared experience and the 
ability to co-produce and co-perform affective transformation with the 
community of achronic “sufferers” who shared treatment strategies, stories of 
misfortune and loss, macabre jokes, and tactics for respite and relief, I would not 
have been able to tolerate the distress caused by the bioaffective muddle of 
feeling and fascination to which I was subject in the medical care of the 
dermatologist and the neurologist.  
 
Anger carries difference. Tomkins characterizes it as toxic and to be avoided. 
Anger is distressing in part because it is forbidden in a culture of tolerant inclusion. 
My bites were angry, and therefore not tolerated. Distress about other affects, 
Tomkins tells us, is an archaic infantile taboo ignored by psychoanalysis. The 
infant is restrained from doing things that might be self-injurious. The child who 
pets a dangerous animal is punished and warned. The childlike adult who 
imagines themselves  to live in harmony with insects and animals, who refuses 
pesticides and harsh cleaning products, is subject to ridicule and skepticism, or to 



 
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approval for their tolerance. Moral responses to lifestyle choices amplify the stress 
of zoonotic conditions, the reality of which remains subject to skepticism and 
disbelief even among veterinarians, who are amongst their most frequent human 
sufferers. Tomkins writes of the benefits of going “no affect” when one’s distress 
or anger are likely to generate further distress, in the form of humiliation, 
punishment, or censure by “the parent.” When the neurologist pressed me for 
family contacts, they were intensely excited, seeking to find a rare condition, to 
the point that they were willing to walk the line between ethical and unethical 
intrusion. Their interest and excitement (positive affects) led them to subject me 
to shame. My response to these excited demands was intensification of distress 
and, by the end of the week, consternation bordering on anger. I spit them out, 
shutting down communication with them, realizing that this was the only way to 
end this chain reaction of affects that I was no longer able to tolerate. With 
apologies, the providers voided the reports in my chart. My danger immune 
response was successful.  
 
I was able to get past the press of their sense of (d)anger and its provocation of my 
own feelings of self-disgust, self-contempt (shame), and humiliation, as well as 
the disbelief and disgust I similarly faced from others, only because I gradually 
became engaged in affective and practical exploration of the mysteries of this 
(d)anger elsewhere, with interest and action sustained around a community that 
acknowledged the reality of zoonotic transmission with humor and which offered 
self-treatment and self-management guidance without the moral (in)tolerance 
paradigm, and with plans and situated actions organized around performative 
encounters with the reality of a world in which parasites have become a routine 
occurrence we must adjust to living with. The queer art of living with immune 
system failure requires shared experience-based knowledge, humor, and tactical 
science, not (in)tolerance. The cruel optimism of the institutional cure economy 
demands tolerance of a comportment of care in the form of treatment protocols 
that stubbornly cling to the stigma of foreign danger and the horror of dirty 
infectious things. To date, only eighty autoimmune diseases are formally 
classified and many care providers remain skeptical about their causal agents, 
their chronicity, and their recurrence, as well as their etiology and “nonspecific,” 
non-acute cognitive and physical components. Contempt is rampant and 
skepticism is both legion and contagious. While the source of the intensity of my 
immune system’s response to insect bites remains inconclusive (my doctors 
refused to administer a Lyme test despite my dog having tested positive and been 
treated for tick disease), I found myself able to tolerate the condition of living in 
the achronical biosocial state of crowd-sourced autoimmune experience through 
group self-care, and to find routes to cure in this context in which (d)anger was 
destigmatized, recognized as the pervasive and banal thing that it is. The 
sequelae of shame around institutional stigma, however, is something we all 
share as we endure our respective experiences of post-traumatic stress in the 
achronic time of medical (in)tolerance.  



 
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Conclusion 
Our intention has been to bring forward a range of concerns about autoimmune 
affect and (in)tolerance. One of these concerns is the biopsychosocial mangle in 
which emotions emerge acutely and are later described ambiguously, in 
diagnosis, as a bio-psychological response to a pathogen (or illness associated 
with it), and as a co-occurring, self-intolerant condition—a delinked, irrational 
emotional response. As well, we described the temporal experience of 
intermittence and recurrence as achronical characteristics of chronic autoimmune 
disorders and feelings, folded into patterns of symptomatology. In many disease 
narratives, diagnosis is described as a goal or a climax after which feelings and 
their motivating sources change. It feels better to know, one would think. Anxiety 
is replaced by relief and, perhaps, determination to follow a new path to cure. In 
our narratives, we perseverate on the experience of living with and through 
speculative and retroactive diagnoses that forced reverse speculation, the 
rereading of one’s past life, and which, rather than affirming a future in which a 
known condition and its way of life will always be present, generates skepticism 
about the thingness, the autonomy, of what we “have.” We insist on the value at 
this moment in time of living with ambiguity in the affective mangle of 
autoimmunity rather than living with the flawed model of autoimmunity as a 
navigable system in which an immune self is replaced by a paranoid system of 
conquering unknown dangers.  
  
Immunodeficiency and AI syndromes, understood as “post” acute conditions, 
make plain the cruelty of optimism that accompanies narratives of recovery and 
cure. These conditions are produced through an organizational arrangement of 
individuals, data, and time. That the present pandemic times in which we live will 
become achronically endemic, and that our bodies will harbor the viral matter and 
impacts they gleaned along the way, is a reality long understood and experienced 
by people with HIV (an immune deficiency syndrome) and autoimmune 
syndromes ranging from the widely recognized (such as lupus) to those cruelly 
subject to skepticism (such as post-Lyme), as well as those widely believed to be 
going undiagnosed, or those having been missed or mistaken as rare (such as anti-
DPPX). Why medicine wants to seek out rare danger in something as dramatic as 
anti-DPPX encephalitis while refusing a test for the equally devastating but less 
novel syndrome of post-Lyme is a matter for another time, as we chose instead to 
take up our experience narratives, providing autodata that we believe will, in time 
and across other disjointed stories about affective experience in the time of 
autoimmunity, provide the empirical base for eroding endemic (in)tolerance on 
the matter of feelings as interconstituents of autoimmunity as a social condition.  
 
Frank and Wilson explain that Tomkins offers a “disarmingly concise 
characterization of the negative affects as inherently unacceptable” (2021, 61). 
Experienced as punitive, their toxicity requires control. “All the negative affects 



 
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trouble human beings deeply. Indeed, they have evolved just to amplify and 
deepen suffering and to add insult to the injuries of the human condition” 
(Tomkins 2008b, 111). When your body is angry at itself and you can’t fix it, you 
have to find means to produce self-tolerance, and affect is key. Affect is the 
antigen in this model. We need to remember the arbitrary nature of the antigen. A 
good antigen can go rogue. A bad antigen can be harnessed to cure. Perhaps it is 
time to let go of the coding of affect as negative and positive, so we can grasp the 
arbitrary nature of the toxic danger that is tolerance.  
 
 

Notes  
1 We are three historians of art, science, and media, white and middle class. Two 
of us are tenured arts and humanities professors, cis female and over sixty, one 
straight and one queer. One of us is an arts and humanities graduate student, a 
unionized teacher who is cis, male, and straight. We identify as people with 
disabilities living in some relationship to autoimmunity. The link between 
autoimmunity and artificial intelligence implied in our acronym will be examined 
in another essay. Contact us at aihumanitiesresearch@gmail.com 
 
2 For an overview of models and discussion of the persistence of the self/non-self 
model, see Matzinger 1994; Pradeu 2012, 2020; Pradeu and Cooper 2012; 
Swiatczak and Tauber 2020; Tauber 1994, 2000. For critical theory, STS, history, 
disability studies, and medical science studies discussions of these models, see 
Anderson and Mackay 2014; Chen 2007, 2011; Derrida 2003; Ferri 2018; Haraway 
1989; A. Martin 2010; E. Martin 1994; Margulis, Asikainen, and Krumbein 2011; 
Sengupta 2014; Tauber 1994; Titchkosky 2015; Tsai 2011; Wald 2008; and Weasel 
2001. A sample of the biomedical literature: Ahsan 2023; Burnet, Fenner, and 
Clark 1949; Dumes 2020; Fritzler et al. 2021; Jerne 1966, 1974; Lynch and Platt 
2009; Matzinger 1994, 2002, 2022. 
 
3 On anatomopolitcs, see the review of Foucault’s use of the term in Koopman 
2018, esp. 107–8. Also see Foucault 1977, 177–83; 2009, 243; and Adams 2017. On 
the relay between biopolitics and anatomopolitics, see Protevi 2009. On the 
difference between biopolitical regulation and anatomopolitical normalization, 
see Adams 2017 and Tremain 2018.   
 
4 On necropolitics, see Mbembé 2003. On necropolitics in “compassionate” care, 
see López 2020. 
 
5 See, for example, Matzinger (1994, 2000, and 2022), especially on the matter of 
danger, and Carter (2000) on the immune system as a model for designing a 
pattern recognition engine, expanding immune computation as a field that 
understands the immune system as paradigmatically open to learning, a trait 
viewed as a design asset to be emulated. We are exploring the autoimmune 

mailto:aihumanitiesresearch@gmail.com


 
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system’s historical relationship to artificial intelligence in another paper in 
development.  
 
6 In addition to the works by Tomkins cited, we acknowledge Frank and Wilson 
(2021) and Sedgwick and Frank (1995) as canonical sources for understanding the 
affect theory of Tomkins. 
 
7 On artificial intelligence and affect, see Wilson 2010. 
 
8 For some of the key feminist STS literature on tissue cultures, see Cooper and 
Waldby 2014; Landecker 2007; and Waldby and Mitchell 2006. We do not have 
space here to develop our argument, building on Cooper and Waldby (2014) and 
Wilson (2010), that tissue is an affective interface meriting analysis along the lines 
of Tomkins’s understanding of the skin and the face.     
 
9 We acknowledge the difference between immunodeficiency and autoimmune 
conditions. Whereas the former describes lacking or compromised immune 
power, the latter describes a misdirected active response. Previously understood 
as being exclusive, the two sets of conditions are increasingly recognized as inter-
causal, co-productive, and not simply co-occurring. As one rheumatology 
researcher puts it, they are two sides of the same coin (see Schmidt, Grimbacher, 
and Witte 2018). 
 
10 There is no space to discuss concerns with work on care. We point to Andrea M 
López (2020) on care/brutality as a cautionary read in the context of the politics of 
interdependence (Care Collective 2020), María Puig de la Bellacasa (2011), and the 
special issues of Social Studies of Science (Martin, Myers, and Viseu 2015) devoted 
to this concept. We share the sentiment of the edited volume Against Health 
(Metzl and Kirkland 2010) in addressing the affective and physical dimensions of 
care as a strategy in biomedical normalization.  
 
11 The causality of persisting symptoms in Lyme patients is a highly contentious 
topic in the medical field, and is explored in greater detail in Divided Bodies, in 
which Abigail Dumes (2020) contends with the split-self concept of 
autoimmunity.  
 
12 Here we note that post and chronic are not the same thing. Their corollaries are 
after and always, which may co-occur, or not. 
 
13 Anger has yet to be widely discussed in the feminist STS and critical theory 
literature. For an analysis of anger in feminist film aesthetics, see McHugh 2021. 
 
 



 
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Author Bios 
The AI Humanities research group is composed of three historians of art, science, 
and technology, white and middle class. Two are tenured arts and humanities 

https://www.jstor.org/stable/43852890
https://www.tomkins.org/what-tomkins-said/introduction/nine-affects-present-at-birth-combine-to-form-emotion-mood-and-personality
https://www.tomkins.org/what-tomkins-said/introduction/nine-affects-present-at-birth-combine-to-form-emotion-mood-and-personality
https://www.jstor.org/stable/41491041
https://doi.org/10.1016/s0167-5699(05)80046-5
https://www.jstor.org/stable/3810713


 
Special Section: Autoimmunities in the Wake of COVID-19                                                

 
 

     | Catalyst: Feminism, Theory, Technoscience 10 (1)                                        AI Humanities Research Group, 2024 
 

42   

professors, cis female and over sixty, one straight and one queer. One is a 
technology and arts and humanities graduate student, a unionized teacher who is 
cis, male, and straight. We identify as people with disabilities living in some 
relationship to autoimmunity. The link between autoimmunity and artificial 
intelligence implied in our acronym will be examined in another essay. Contact us 
at aihumanitiesresearch@gmail.com. 
 
 

mailto:aihumanitiesresearch@gmail.com

	Autoimmunity and Affect: Tolerance and Time in Three Narratives
	Abstract
	Keywords
	Introduction
	Narrative #1: The Unhealing Wound: Distress and Eustress
	Narrative #2: Lyme Time: Anger-Rage
	Narrative #3: Anti-DPPX: Disgust and Humiliation
	Conclusion
	Notes
	References
	Author Bios