SHAME: THE HIDDEN COST OF LONG COVID

When there is talk of Long Covid, scant attention is paid to what it is like for sufferers to endure the multiplicity of symptoms linked to this condition, particularly fatigue and brain fog. As a psychotherapist I treated Long Covid sufferers over the course of a year, and found that the emotional toll of Long Covid, which takes the form of shame, is one that cannot be ignored and which is intrinsically tied to society's view of what constitutes illness.

In November 2021 I signed a contract with a mental health intermediary agreeing to offer six online sessions of mental health support to individuals who suffered from Long Covid symptoms. Over the course of the following thirteen months, I supported adult men and women across the United Kingdom who mostly held office jobs in companies of varying sizes and within different sectors.

These men and women had all contracted the Coronavirus at least once, and none had been hospitalized due to their Covid infection. By the time I saw these clients, many had been signed off sick intermittently over the course of a year or less as they had unsuccessfully attempted returns to work. Some had been on continuous sick leave and others were drawing near the end of their employer’s sick pay scheme. Only one of the thirty-six clients had received an official diagnosis of Long Covid.

Individuals had reported the multitude of symptoms that afflicted them on referral forms, and the most challenging seemed overwhelmingly fatigue and brain fog. However, the least reported symptoms were those that actually surfaced the most during our sessions - hopelessness, anxiety, anger, shame. I would eventually find out most individuals were acutely worried their employer would not take their condition seriously, and that they’d be simply labelled as lazy, depressed or frauds.

Fatigue

The men and women I spoke to over the course of a year recounted experiences of fatigue that were disabling and life-altering. The overall sense I gathered during our sessions is that Long Covid fatigue is overpowering, unpredictable and strips sufferers of their sense of agency. These men and women had been deprived of their intentionality and of their identities.

The simplest tasks, from walking across a room to getting dressed, required gargantuan efforts. One said ‘it feels hard even to hold yourself up’, while another described how ‘everything feels slow and heavy, like wearing moon boots’. Individuals described how it would take them several hours in the morning just to get out of bed, get dressed and have breakfast. The simplest of tasks became huge obstacles. There is a feeling the whole ‘body is like lead’, weighing more than one can actually carry. As one athletic client articulated, their body had always been ‘an afterthought’ – but with Long Covid their body now got constantly in the way.

Boom-Bust

Contrary to popular perception, most individuals did not suffer from a constant sense of fatigue, but rather what felt like an irregular experience of ‘boom and bust’ cycles. During the boom cycle, individuals would report feeling ‘wired and tired at the same time’. For some this occurred in the middle of the night, hence Long Covid’s associated symptoms of insomnia or disturbed sleep. One individual described this state as ‘the head feels rested but the body is knackered…I’m wide awake but in the wrong body’.

Others experienced this boom for brief intervals during the day, while others could have several days of feeling relatively normal. Understandably, they would want to make the most of their moments of newfound energy and pack as much as possible in those fleeting windows of relative normality. Individuals would report feeling almost ‘high on adrenaline’, while others said they almost felt like they were able to ‘psych themselves up’ for a particular task or activity. Coincidentally it is this experience of a ‘boom’ that enabled these men and women to sit through our fifty-minute sessions. Only a few times during my year of treatment did I have to end our sessions prematurely because of a client’s overwhelming fatigue or brain fog. As a matter of fact, most of the time onscreen these individuals would appear deceivingly healthy, a dimension of Long Covid which, as we shall see later, is a source of guilt and shame.

However, these boom intervals are duplicitous – they initially provide clients a sense of hope and elation - hope that recovery is underway, elation that freedom from the shackles of fatigue lies just around the corner. However without exception, there follows a ‘bust’ cycle, where individuals would not be able to get out of bed, sometimes for days at a time. It is worth noting that these affective cycles of elation followed by a collapse mimic the affective contours (Stern, 2004) of the aetiology of shame (Schore, 2016).

Brain Fog (Disorder of Executive Function)

Fatigue and brain fog are intrinsically related. The experience of brain fog causes fatigue and the latter exacerbates the brain fog. In brain fog symptoms become manifest in a variety of different ways, such as forgetfulness, difficulty concentrating, impairments in reading and planning. Mundane daily actions that were once so familiar they were executed out of conscious awareness, become challenging labyrinthian tasks that require explicit thinking, time and effort.

One individual described that while preparing breakfast, he was caught up debating whether he had to get the spoon out of the drawer before getting the cereal box out of the cupboard, or whether he needed to pour the milk in the bowl before the cereal.

An avid fan of Netfix’s Ozark reported that since contracting Long Covid he struggled to follow the episodes’ narrative. Clients reported experiencing difficulties with reading and writing, which made them worry they would never be able to work again. One client recounted a dream where he is reading, index finger tracking the words in each sentence. Following the passage of his finger however, the individual words disappear from the page, and along with that his understanding of the content - an evocative oniric representation of his challenges. As another put it, the experience of brain fog is like ‘not being able to have a big picture knowledge and make connections between parts’. One avid player of dominos described he now had to ‘…count each domino in my hand rather than having an idea of what I have straight away….I’m back to a beginner level’. As one client succinctly summarized it, with brain fog it ‘feels like someone has destroyed part of my brain’. All these individuals find themselves constrained to concentrate on every finite detail for simple or familiar tasks, which not only leads them to feel exhausted, but to lose their sense of self.

Emotional Cost: Shame

Almost all individuals I spoke to seemed to share an entrenched incredulity about Long Covid. Many said things like ‘Long Covid is not real…I just need to pull myself together’. There was an overarching sense that the symptoms they were experiencing must be of their own making, and that instead of Long Covid they were just weak minded, unable to cope, depressed or simply lazy.

This self-destructive affect intensified ahead of meetings with line managers, insurance representatives and even GPs or occupational therapists. As mentioned earlier, these individuals could appear deceivingly healthy - as a matter of fact, of the thirty-six clients I saw over the course of a year, only a handful displayed overt physical symptoms such as coughing, raspy voices or breathlessness. The rest were therefore painfully aware that without proof in the form of a medical diagnosis they could be perceived as frauds, both in their own eyes and those of others.

The sense of fraudulence (which one could refer to as Impostor Syndrome) is also accompanied by a strong sense of guilt - clients felt they were letting down their family and colleagues. There was guilt for burdening partners who had to take on additional household tasks or colleagues to whom their workload and responsibilities had been shifted. Parents felt guilty for no longer being capable of engaging with their children. And those who were single experienced a greater degree of loneliness and isolation. There was equally a sense of abandonment from colleagues and line managers who stopped checking in or cancelled scheduled catch-up calls. As one told me ‘..a colleague broke his leg and everyone got updates or flowers, but with [Long] Covid there is no understanding’. Many questioned whether they would ever be able to work again. And even those slated for a phased return to work, the fear was that the brain fog would prevent them from working effectively, which would lead them to being eventually dismissed or pushed out of the company.

The symptoms of fatigue, brain fog and their emotional fallout had such an impact on some individuals and their lives that they no longer recognized who they once were. “I lost my personality, I lost my mojo..I look moody..I’ve lost my hobbies, interests….lost my fizziness..…”. These multi-layered affective states consisting of guilt, sense of failure, abandonment, loss of identity amount to an overarching experience of shame. And shame, as we know, is that sleeper emotion (Lewis, 1987) which underlies so much in psychopathology (Benau, 2017). There therefore exists a circular relationship between Long Covid and mental health which exacerbates the symptomatology, an aspect corroborated by recent medical research (Ceban et al.,2021).

Treatment Approach

As I illustrate my treatment approach, I think it is important to note that I delivered sessions within a broader support package which also included six sessions with a physiotherapist and six sessions with a respiratory therapist. None of the Long Covid sufferers had specifically requested mental health support and the greatest majority had never experienced any form of counselling. Consequently, on the first session I was often met with perplexion and even diffidence – there was confusion about the nature of the call, which got lost amongst the myriad of appointment reminders these employees had received. But more importantly, there was diffidence about how mental health support in particular could help with the very real and tangible symptoms of fatigue, brain fog or breathlessness. Most therefore accepted to come on the call just to show their employer they were indeed trying their best to get better.

It was an odd position to be in as a psychotherapist – however one where my past corporate experience came in handy. I consequently formulated my own ‘pitch’, focusing on a two-pronged ‘service offering’ – on the one hand I justified my presence by explaining that some research had shown a strong correlation between trauma and Long Covid symptoms (Proal et al. 2021, Ceban et al. 2021). I would mention that for some individuals Long Covid felt like it had opened a door on experiences that had remained below the surface, and that using the space to address these, albeit limited to six sessions, could offer some form of relief and support. The other option was a more practical approach aimed at managing day to day symptoms, incorporating CFS/ME[1] protocols focused mostly on pacing and limiting sensory overload.

Unprocessed trauma

My first client was a young woman who suffered from fatigue, joint pain, breathlessness, insomnia and an altered sense of smell. She had never spoken to a psychotherapist or a counsellor before. In our first session she disclosed to me how she felt Long Covid had opened the gates to issues that had always been simmering below the surface. What emerged quite quickly was an extensive history of emotional abuse and neglect. Through a therapeutic approach integrating person-centred, self psychology, object relations and psychological education, by the end of the six sessions, she reported feeling like she had ‘more room to spare in her head’. She felt validated and reported that her joint pain had disappeared and that her sleep pattern had returned to normal. She said the fatigue was still there but nowhere near as intense as in our first session.

I am not implying that thanks to six sessions of psychotherapy she was cured of Long Covid symptoms. Nor am I suggesting that we had integrated the split-off parts (Bromberg, 2009) of her Endopsychic Model (2014) – extensive relational trauma does not get metabolized (Bion, 1962) in six sessions. However it was quite surprising to see the effect that our limited sessions of psychotherapy had on the intensity of her somatic symptoms, no matter how temporary this effect may have been.

Processed trauma[2]

Although there were predictable crashes following social interactions, physical exertions or sensory overloads, my clients and I found it close to impossible to isolate triggers that could reliably help mitigate future busts, no matter how hard they tried to structure and pace their day. What seemed feasible one week, such as walking one hundred meters, showering or limiting garden work to fifteen minutes, would prove impossible the next.

So the practical treatment approach first involved validation and education - reiterating that Long Covid was a real condition, and that it was not just in their head. I would reference research papers, statistics, articles. I would discuss the parallels with CFS and other functional disorders. Particularly with brain fog, I would use the more appropriate label of Disorder of Executive Function. We used labelling and education to validate their experiences.

The other dimensions of treatment included transparency and acceptance - I would be honest about the current knowledge limitations on Long Covid, that there was no known cure for it, and that there was scant predictability in symptoms. I was also transparent about the limitations of counselling in this context – that I could not take away their fatigue, breathlessness or brain fog. I validated their pain by being inquisitive and curious about the phenomenology of their experiences. I would tell them how I would hear other clients use similar metaphors when describing their symptoms. Although clients were cognitively aware many people across the world were suffering from Long Covid, to hear from me that they were not alone seemed reassuring. Consequently I would encourage individuals to sign up to the NHS Long Covid clinics which offered online groups, amongst other things, as a form of support.

From a practical perspective, structuring their experiences and identifying the four types of fatigue (emotional, physical, cognitive, sensory) as per the NHS protocol proved to be a very helpful technique, certainly more so than the daily diaries clients were asked to complete by other therapists, which often resulted in an overload of note keeping that many individuals found overwhelming and tiring. In conjunction with CFS/ME protocols, we discussed modifying daily habits with the aim of decreasing sensory stimulation. This would help clients make sense of why they would feel overwhelmed when the TV was on in the room or if several people were chatting next to them. Although there is no predictability in the symptoms, structuring their experience seemed to help restore some form of agency.

However, the practical goals of pacing and sensory awareness had to be carefully calibrated, particularly when the sense of hopelessness prevailed. In those circumstances the benefits of social interaction could outweigh the benefits of following CFS/ME protocols. Consequently, by the end of treatment we usually reached a phase that I labelled colloquially ‘managing the trade-off’ – finding ways to increase wellbeing through social engagement whilst being aware of the subsequent costs, a balancing act that clients would eventually need to finetune on their own through trial and error.

Implications

The emotional cost of Long Covid materializes via multi-layered affective states that together constitute an experience of shame. This affective dimension of Long Covid is a product of context rather than the condition itself, and it is one which exacerbates Long Covid’s somatic symptomatology. In addition, as the experience of shame has been shown empirically to be central to many forms of emotional suffering, such as depression, this circular relationship would corroborate the research statistics pointing to higher mental health diagnosis after infection.

And this shame has roots in modern society’s current view of illness. However, as we have seen with Long Covid, illness cannot be defined as a purely physiological condition that occurs to an objective body and which can be measured in mechanistic terms. As Martin Heidegger, who is among the most important and influential philosophers of the 20th century correctly put it “you can never actually measure tears. If you try to measure them, you measure a fluid and drops at the most, but not tears.” (Heidegger, 1972, p.81).

The advent of Long Covid forces us to at least revisit the dominant notions of pathology. In his The Normal and the Pathological (1991) Canguilhem developed a notion of health that is centered on the ability of the living organism to establish its own vital norms. Illness would therefore be defined as the organism’s inability to set new vital norms for itself in accordance with a changed environment or a change in its own organization. Such a conceptualization would at least enable sufferers of Long Covid, CFS and other functional disorders to be recognized as ill, and therefore safeguard them from the dimension of shame which exacerbates an already burdensome condition.

Footnotes: [1]Chronic Fatigue Syndrome/Myalgic Encephalomyelitis [2]I believe we all suffer some form of relational trauma during our lifetime. The extent to which these experiences have an impact on our adaptive capacities depends on the repeated frequency of these experiences and the degree to which these were metabolized, processed, repaired with significant others. Hence my choice of ‘processed trauma’ to signify those individuals whose adaptive capacities remained flexible.

REFERENCES

Balfour, H., Hoffman, W.,It’s Not Just Long COVID. The Atlantic. August 12, 2022.

Benau, K., (2017). Shame, Attachment, and Psychotherapy: Phenomenology, Neurophysiology, Relational Trauma, and Harbingers of Healing. Attachment: New Directions in Psychotherapy and Relational Psychoanalysis, Vol. 11, May 2017: pp. 1–27.

Bion, W.R. (1962). Learning from Experience. London: Heinemann.

Bromberg, P.M. (2011). The Shadow of the Tsunami and the Growth of the Relational Mind. New York: Routledge.

Bromberg, P. M. (2009). Multiple Self-States, the Relational Mind, and Dissociation: A Psycho- analytic Perspective. In Dell, P. & O’Neil, J. (eds), Dissociation and the Dissociative Dis- orders DSM V and Beyond, pp. 637–652. New York: Routledge.

Callan, C., Ladds, E., Husain, L., et al. ‘I can’t cope with multiple inputs’: a qualitative study of the lived experience of ‘brain fog’ after COVID-19. BMJ Open 2022;12.

Canguilhem, G. (1991). The Normal and the Pathological. New York: Zone Books.

Clarke, G., Scharff, D. (eds). (2014).Fairbairn and the Object Relations Tradition. London: Karnac.

Gilio L, Galifi G, Centonze D and Stampanoni Bassi M (2022) Case Report: Overlap Between Long COVID and Functional Neurological Disorders. Front. Neurol. 12:811276.

Heidegger, M., & Boss, M. (Ed.). (2001). Zollikon seminars: Protocols —conversations — letters. (F. Mayr & R. Askay, Trans.). Northwestern University Press.

Kirmayer, L., Lemelson, R., Cummings, C., (eds) (2015). Re-Visioning Psychiatry: Cultural Phenomenology, Critical Neuroscience, and Global Mental Health. Cambridge University Press.

Kumar S, Veldhuis A and Malhotra T (2021) Neuropsychiatric and Cognitive Sequelae of COVID-19. Front. Psychol. 12:577529.

Lewis,H,B “Introduction: Shame – the ‘Sleeper’ in Psychopathology,” in The Role of Shame in Symptom Formation, ed. Helen Block Lewis. Hillsdale, NJ: Erlbaum, 1987.

Lu, D. ‘We never seem to recover’: the Australians grappling with Long Covid. The Guardian. Friday 11 Feb. 2022.

ME/CFS Treatment Recommendation, US ME/CFS Clinician Coalition, Version 1, February 20, 2021. Downloaded f on May 20 2023 from http://www.cfsselfhelp.org/pacing-tutorial

Pacing and Management Guide for ME/CFS. Downloaded on May 20 2023 from https://www.meaction.net/tools/

Proal, A.D.,Van Elzakker, M.B. (2021). Long COVID or Post-acute Sequelae of COVID-19 (PASC): An Overview of Biological Factors That May Contribute to Persistent Symptoms. Front. Microbiol. 12:698169.

Schore, A. (2016). Affect regulation and the origin of the self. 1st ed. New York: Taylor & Francis.

Stern, D.N. (2004). The Present Moment in Psychotherapy and Everyday Life. New York: W. Norton

Armitage, H. Biomarker for chronic fatigue syndrome identified April 29, 2019. https://med.stanford.edu/

Ceban F, Nogo D, Carvalho IP, et al. Association Between Mood Disorders and Risk of COVID-19 Infection, Hospitalization, and Death: A Systematic Review and Meta-analysis. JAMA Psychiatry. 2021;78(10):1079–1091.

Choutka, J., Jansari, V., Hornig, M. et al. Unexplained post-acute infection syndromes. Nat Med 28, 911–923 (2022).

Resnick, B., Psychiatrists are uncovering connections between viruses and mental health. They’re surprising. Vox Dec 1, 2021.

Timo Elmo Feiten, Kristopher Holland, Anthony Chemero. Worlds Apart? Reassessing von Uexküll’s Umwelt in Embodied Cognition with Canguilhem, Merleau-Ponty, and Deleuze. Journal of French and Francophone Philosophy, Vol XXVIII, No 1 (2020) pp 1

Yong, E. One of Long COVID’s Worst Symptoms Is Also Its Most Misunderstood. The Atlantic, September 12, 2022

Yong, E., Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases, The Atlantic September 26, 2022.

Yong, E., Long COVID Is Being Erased—Again, The Atlantic April 19, 2023.