Long COVID Patient Narratives: Part 1

In 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.

 

Our eleven-year-old son is athletic, I explained in May 2022 while at a new family medicine appointment for what was possibly his third broken bone. He’d never had a fracture before contracting COVID-19. We have two x-rays proving previous broken bones and there is peer-reviewed research on significant bone density loss related to COVID-19 – a dangerous condition for children whose bones are still forming (Awosanya 2022). The physician took time to ask questions as he went through the log that I had kept of my son’s and my initial infections from March 2020, our multiple ongoing symptoms (see Fig. 1), and the reinfections despite vaccination. He took notes at the computer, frequently looking at the screen instead of at us. Then he calmly stated, ‘COVID is a respiratory disease.’

 

A child sits with a ginger cat on their lap. They hold a piece of paper in front of their face which reads "Age 10, Day 320. Fatigue, Fever, Dizzy, Headache, Loss of Appetite, Sharp Stomach Pain. Previously: Tingly Limbs, Cough, Sore Throat, Dip in Oxygen Levels, Elevated Pulse #longcovidkids"
Figure 1. Photo © Phyllis Weliver, 8 Feb 2021.

When I realized that the doctor questioned our story – our experience – I mentally checked out of the conversation and politely left as quickly as possible. By now, this situation has happened so often that I know that attempting to engage in the conversation will simply lead to frustration on both sides. Yet when the patient stops talking, correct treatment cannot occur, especially with a perplexing illness like long COVID (LC) that presents in myriad ways and frequently eludes testing.

 

While there is much that the world does not yet know about LC, we can address system-level issues that have to do with how we frame the disease. Doing so is vital for figuring out how to treat complex, confusing and often dangerous symptoms. The patient needs the doctor’s expertise in how the body works, as well as to bear witness. When doctors fail on the latter, they fail the patient. Being invalidated increases stress (which worsens physical health), can impact mental health, and wastes precious energy that I, for one, need to conserve for other things. Intentional or not, invalidation is also a microaggression.

 

In contrast, healing has to do with honoring patient and parent observations. Luckily, not everyone is deaf to stories of ill-being. My primary care physician, ophthalmologist and acupuncturists listen closely and combine our mutual research. In my family’s experiences with numerous general practitioners and specialists for over two years, though, this method is the exception. Unless doctors see many patients with LC and specifically stay abreast of LC studies, they do not know the minutia of the condition, perhaps especially because they are barred from gathering information from the many LC support groups who understandably protect member privacy. It may be that a medical professional does not understand this lack as problematic, however, because our objects of study and approaches differ.

 

I am a highly trained academic in the humanities, specializing in the close reading of literary texts and non-fictional prose, and in analyzing large archives. When the medical system could not help my son’s and my long COVID, I automatically sought answers by studying multiple primary and secondary sources, including our health logs, the symptoms and lab results shared in several LC communities comprising tens of thousands of COVID-19 survivors and caretakers on social media, conversations with friends who are experts (medical doctors), and peer-reviewed research as it appears.[1] These are the same types of sources that I study in my research on English literature and the history of ideas, including the history of science. Also aligning with my training, I utilize a Socratic approach to fact-finding; this collaborative question-asking drills ever deeper in order to understand complicated and nuanced situations. But this method does not align with the medical system’s focus on ‘[c]linical algorithms’ for diagnostics (Groopman 2011: 5) and my contributions as patient and a sister-professional are usually dismissed once I cross the threshold of the doctor’s office.

 

This is true, despite a half century of medical schools using literary analysis as a method of preparing doctors to make complex diagnoses (Jones 2013: 427-8). When dealing with a mysterious illness where datasets do not yet exist, such treatment is more than demeaning; it’s dangerous.

 

This is a two-part essay. Read part 2 here.

[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.

 

 

Acknowledgements

Figure 1 previously appeared in the video, ‘One Year On – Long Covid Kids’ (Long Covid Kids). 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.

 

References

Awosanya, Olatundun D., Christopher E. Dalloul, Rachel J. Blosser, Ushashi C. Dadwal, Mariel Carozza, Karen Boschen, Michael J. Klemsz, et al. 2002. Osteoclast-Mediated Bone Loss Observed in a COVID-19 Mouse Model. Bone(154): 116227. https://doi.org/10.1016/j.bone.2021.116227.

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

Jones, Anne Hudson. 2013. Why Teach Literature and Medicine? Answers from Three Decades. Journal of Medical Humanities (34., no. 4): 415–28. https://doi.org/10.1007/s10912-013-9241-9.

Long Covid Kids. One Year On – Long Covid Kids. Long Covid Kids YouTube. March 14, 2021. Video, 2:13. https://youtu.be/IrpTiMPvcoM.

 

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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