Interembodiment
Carers and Beloveds amidst Living with Complex Chronic Illness
Possibly the most important research question I ever ask - in every place I’ve worked - is: do you have someone in your life who can lend you money when you need it? Other questions matter, of course: do you have a safe and secure home, do you reliably have food on the table, and are the good days more frequent than the bad? Living with chronic illness can be difficult, particularly when resources are limited. However, when you have at least one person who is there to take care of you, your life expands and improves in such meaningful ways. It takes a village.
I’ve been thinking a lot about the power of caring for each other over the past several years. Jessica Hardin and I edited a book, forthcoming in October!, called Savoring Care: Flourishing with Diabetes Across Cultures, which addresses the ways people live well with diabetes when they have expansive caring communities. I’ll share more on the book soon, but here I’ll say it’s a creative ethnographic approach; some authors use ethnographic fiction, creative vignettes, or ethnographic snapshots to tell these stories. In most cases, measuring the impacts of these relationships quantitatively are nearly impossible. For example, how do you measure the meaning and impact of having someone available who can get you a glass of water in the middle of the night, or help you go to the bathroom when you’re feeling weak? Or the power of a friend who regularly stops by to make sure you’re okay, bring you a meal, or simply sits with you when you’re feeling a lot? Stories make these impacts real and explain how we can mutually transform each others lives by caring for each other in deep and rejuvenating ways.
This week I published a new article that tells the stories of three people I interviewed for the Long Covid project, in collaboration with Shreeja Banerjee and Ayo Wahlberg, entitled, “Interembodiment among Long Haulers and their carers” (enjoy this share link - you should be able to download the whole article for free).
We center three stories in this piece to illustrate how living with complex chronic illness not only involves a social embodiment but in many ways, there is a deeply biological connection between the carer and the cared for. The first story involves Krista and her daughters who came down with COVID-19 in February of 2020. Over the months that followed, their lives were transformed by intense headaches, blurred vision, and muscle weakness. It took two years until they—nursing each other through this difficult period—recovered to a new semblance of health, a new vitalism they discovered and came to terms with together. In the following month, Monica had a mild case of COVID-19 on the opposite coast. When the cough receded, however, she didn’t get better. Instead, Long Covid tore away a life she had worked so hard to build. Monica was too weak to walk her dogs or pick up her prescriptions; eventually, her ex-husband who remained her close friend moved in with her to nurse her back to health while he was facing health challenges of his own. Eighteen months later, Polly had her second vaccine. Although her first prick was without incidence, the second one caused several unexpected symptoms within 24 h. She became fatigued, dizzy, and had a headache. Eventually, her body betrayed her and she could no longer work, losing her job and eventually her home. These extraordinary life changes had a profound impact on her mental health, and she explained her will to live was only linked to caring for her son who had dementia. Polly found solace in the friends she made online, with others living with Long Covid as well as a famous doctor online who was pedaling recovery.
We argue that embedded in the everyday lives of Krista, Monica, Polly and so many others living with Long Covid is an interdependence where not only their social lives are mutually reinforced with others but their bodies are, too. We employ a theory of interembodiment to reveal how “ongoing processes of bodily transformation that occur through shared illness experiences and sick roles regardless of the presence or absence of diagnosed disease” become essential elements of everyday life and cultivating a new balance (Bunkley, 2022: 258). For Krista, this interembodiment is with her children who are similarly sick and whose sickness, she perceives, is intergenerationally interconnected. For Monica, this interembodiment is with her partner and caretaker, Mark, who is struggling with cancer and caregiving for her, while they manage their symptoms together and their futures remain uncertain. Finally, Polly describes how she strives to care for her son who is living with dementia while managing her own sickness, finding solace in a digital community that is far from the life she once lived as a pastor or from the life she is living as a sick caretaker. These examples demonstrate various levels of interembodiment that become realized in chronic living as people ill from Long Covid navigate the layers of support in the home, community, and clinic.
Take a look at the article for free - download it asap as I’m not sure how long the free link will work.