Long COVID Patient Narratives: Part 2

In the second part of this two-part essay, Professor Phyllis Weliver considers the importance of long haulers’ voices for therapeutic expression, reframing social experience, and providing data for treatment. Read part 1 here.

 

Narratives for wellbeing, narratives for evidence

Having discussed my experience and that of my young son in part 1, along with the tensions between different source materials and research expertise, I now turn to writing by long haulers and their caretakers. Alongside the symptom trackers and surveys conducted among long COVID (LC) social media support groups – so-called COVID ‘citizen science’ (Marcus 2021) – storytelling in its myriad forms offers patient-led insights, but with the finer grain of cura personalis (care for the whole person). As we seek to cope with a terrifying and elusive virus, the three things that are unambiguously clear to me as a scholar in the humanities, a long hauler, and a parent of a ‘long COVID kid’ all pivot around the importance of patient narratives.

 

A thermometer is placed between the pages of a notebook with a black and white cover
Photo © Phyllis Weliver.

First, telling one’s story heals: verbal, visual and musical creativity can be cathartic, motivational, affirming, and more. Our family became ill with COVID-19 so early in the pandemic that we are considered first wavers. While my son received little medical support, I was lucky enough to be diagnosed with LC, to have lab results that revealed something amiss, and to have a primary care physician who strongly advised me to take a semester-long medical leave. He suggested that I read for pleasure during the leave, but at that time reading brought on terrible headaches. Knowing the therapeutic value of the arts, I began to write creatively instead. The resulting book, The Arrow Tree: Healing from Long COVID(2021), is an account of my recovering while living in a rustic cottage in wild Michigan. The book is about having long COVID, but it is also written in a style reflective of my state of being. Rather than academic prose, it is poetic, place-oriented non-fiction. Professor of English and long hauler Ann E. Wallace similarly turned to poetry as a genre ‘suited for fragmentation, brevity, and disorder’; one ‘in which order, whether temporal or syntactical, disintegrates into the stuttering rhythms of my breath.’ This creative story-telling helped Wallace to ‘maintain a vital sense of self even as [her] life was reduced to the rhythms of COVID’ (Wallace 2021). Writing thus supports ‘mental and emotional wellbeing’, as Analytical Linguist Davi S. Reis explains:

It offers me self-validation (putting it on ‘paper’ makes it somehow an artifact that I can document and explore, much like an archaeologist, rather than disappearing after a conversation or remaining a vague idea or opaque feeling); community support (the more other human beings can relate to what I’m trying to express, the less alone and misunderstood I feel); and an outlet for the vortex of emotions I’ve experienced since becoming a COVID Long-Hauler (from sheer anguish to depression, anxiety, and rage). (Personal message, 29 June 2022)

Reis often uses humor to make his point, as in a Facebook post from 2021 that begins, ‘God forbid my mechanic ever takes the approach most of my doctors have taken so far…’ Laughing in recognition of our shared experiences made me feel ‘less alone and misunderstood’, too.

 

In addition to individual efforts such as these, LC support groups are beginning to encourage their members to express their feelings and experiences beyond their social media posts.[1] Patient narratives as healing for long haulers is recognized by the US-based Body Politic Covid-19 Support Group in its partnerships with the Writers Guild Initiative (WGI), who lead online ‘Writing Workshops for Long Haulers’ – the first of WGI’s workshops to be offered world-wide. With two mentors per six- to eight-person group, and a promise of confidentiality, the patient-oriented goal is simply ‘to explore storytelling’ in three sessions plus an optional sharing event at the end.[2] Participants may thus choose to keep their narratives private, but as a ‘marginalized population’ with a ‘stark lack of voice both in mainstream media and in the medical community’, in the words of American playwright and first wave long hauler T.D. Mitchell, there is also a public-facing impulse toward the underserved. Long Covid Kids (LCK) in the UK similarly embarks this summer on an international creative project, Founder and CEO Sammie McFarland and project leader Colin Pidgeon shared with me (message 27 June; e-mail 2 July 2022). This initiative fosters the wellbeing of the youngest long haulers and their families and, by publishing a selection of the resulting poems and artwork, it raises awareness and funding for other support services.

A marginalized community in need of a voice

‘Writers Guild Initiative’s mission is most emphatically to give marginalized populations the tools of writing through professional mentorship, so those populations can tell their own narrative,’ playwright and WGI volunteer mentor T.D. Mitchell informed me (e-mail 1 July 2022). ‘As my illness continued, I told Chiara Montalto-Giannini [Director of Programming and Communications, WGI] that my long-hauler Community, with our stark lack of voice both in mainstream media and in the medical community (beyond as providers of the data of our bodies), was now one such marginalized population, and needed such a workshop.’

Second, really listening to patient narratives reframes social understandings of disease, including negative stereotyping which impacts daily suffering as well as accurate diagnostics.[3] Not only have I been challenged by pediatricians in how I understand my son’s and my ill-being, but I have been subjected to repeated shaming by laypeople for being unwell past my medical leave. Despite being deemed sufficiently recovered to resume work in January 2021, I still suffered from fatigue, headache, brain fog, and more as I approached my ‘covidersary’ (the anniversary of the onset of symptoms). My physical suffering was usually invisible (the pounding head, shortness of breath, and inevitable collapse every weekend, which I would spend bedridden), but so was the mental journey. Colleagues did not witness my sense of vulnerability. Indeed, I did not myself understand the traumatic nature of severe illness. My doctor’s immediate validation when I tentatively suggested that I might be experiencing PTSD made such a difference in my beginning to heal from the trauma. He indicated, ‘I hear you’, which is awfully close to saying ‘I (am) here (for) you.’ These are powerful words of support that can assuage the anxiety and stress of illness.

 

I am extremely fortunate in having as much support as I do, for many long haulers are disbelieved by doctors, employers, family and friends, as well as deserted by loved ones. Tragically, there have also been suicides. At Vanderbilt University Medical Center, autopsies of deceased long haulers’ brains reveal the ‘inflammation and ongoing cellular abnormalities’ that may cause suicidal thoughts and behavior (Wes Ely, Grant W. Liddle Endowed Chair at Vanderbilt University Medical Center, cited in Ducharme 2022). These are crucial findings. So, too, is the evidence found in multiple social media posts by long haulers that suggest that terrible social situations like desertion, loss of income, and extreme isolation also lead to suicidal ideation.

 

My final point, that the patient story provides data, is not new. On 12 December 2020, an editorial in The Lancet called for medical professionals to ‘listen to patients to understand their concerns, validate their experiences, and manage their symptoms and comorbidities, referring patients as needed’ (The Lancet 2020:1861). Validation begins with taking someone seriously – including their mode of non-clinical information gathering – and this can lead to open-ended discussion. This type of conversation does not seem to be happening in a large-scale way because the medical profession privileges testing – a problematic orientation for treating millions of people who are ill with diseases where laboratory work does not register what is happening, as the myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia, and Lyme communities know all too well. The health care system needs to incentivize the reporting of patterns discerned in long hauler stories, as well as double-blind clinical results. To someone who thinks through writing, and teaches others to do so, it is clear: ‘You are what you write.’

 

If the medical profession could realize that patient accounts are themselves complex evidence that requires a multi-disciplinary analysis, then a lot of data will come to the fore. Since many long haulers have found acupuncture a useful treatment, what might emerge through bringing together Western medicine with traditional Chinese medicine? Because we know that COVID-19 and LC create havoc across bodily systems, why aren’t more doctors working together across areas of specialty? Are the specialisms of Western medicine even counterproductive to viewing larger patterns? If health professionals took patient narratives to heart as objects of study and analyzed them with a cross-disciplinary team that included humanists who are trained to examine the complexity of linguistic expression, then patterns will emerge that will help our understanding of what is, for millions of us, a very long COVID.

 

 

[1] My main social media sources are: Body Politic Covid-19 Support Group, for patients and caregivers (Slack, 11,000 members); Long Haul COVID Fighters – Round 1 on Facebook, which has 6300 ‘survivors recovering from COVID’; Long Covid Kids Support Group, comprising ‘families, children and young people’ (Facebook, 6400 members); and patient-led Twitter hashtags like #LongCovid and #LongCovidKids.

[2] Writer’s Guild and Body Politic Workshop Sign Up Form, April 2022. According to Chiara Montalto-Giannini, workshops have run in Spring 2021, Fall 2021, and Spring 2022, with another planned for Fall 2022 (e-mail 1 July 2022).

[3] For attribution errors, see Groopman 2011: 44.

 

Acknowledgements

The author would like to thank Afua Bromley, Sara van den Berg and Bruce Durazzi for commenting on early drafts; and Sammie McFarland and Colin Pidgeon (Long Covid Kids), Angela Meriquez Vázquez and Marissa Oliver (Body Politic), Chiara Montalto-Giannini (Writers Guild Initiative), T.D. Mitchell, Ann E. Wallace, Davi S. Reis, and the members of social media support groups who responded to requests for information. Writers Guild Initiative, an independent non-profit organization, is separate from, but affiliated with, Writers Guild of America, East.

 

References

Ducharme, Jamie. Why so many Long COVID Patients are Reporting Suicidal Thoughts. Time. June 13, 2022. https://time.com/6186429/suicide-long-covid/.

Groopman, Jerome E. 2007. How Doctors Think. Boston: Houghton Mifflin, 2011.

The Lancet. 2020. Facing Up to Long COVID. The Lancet (396, no. 10266): 1861. https://doi.org/10.1016/S0140-6736(20)32662-3.

Marcus, Amy Dockser. Covid-19 Patients are Doing their Own Covid-19 Research. Wall Street Journal. January 30, 2021. https://www.wsj.com/articles/covid-19-patients-are-doing-their-own-research-11611982860.

Reis, Davi S. 2021. ‘God forbid my mechanic ever takes the approach most of my doctors have taken so far…’ Survivor Corps Group. Facebook. October 13, 2021. https://www.facebook.com/groups/COVID19survivorcorps/posts/1076025456479646/.

Wallace, Ann E. 2021. Quarantined Voices: On the Transformative Impact of COVID Narratives at a Time of Crisis. On_Culture (11). https://doi.org/10.22029/oc.2021.1227.

 

About the author

Phyllis Weliver, Professor of English at Saint Louis University, is the author of The Arrow Tree: Healing from Long COVID (2021). Twice funded by the National Endowment for the Humanities, she also publishes on the connections among literature, music and other Victorian discourses, including mental science, evolutionary biology, politics, gender and class. Her monographs are: Women Musicians in Victorian Fiction, 1860–1900: Representations of Music, Science and Gender in the Leisured Home (Ashgate 2000; Routledge 2016); The Musical Crowd in English Fiction: 1840–1910: Class, Culture and Nation (Palgrave Macmillan 2006); and Mary Gladstone and the Victorian Salon: Music, Literature, Liberalism (Cambridge University Press 2017). Connect with her on Twitter: @PhyllisWeliver

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