Lost and changed meaning in life of people with Long Covid: a qualitative study

ABSTRACT

Long Covid (LC) has been called the greatest mass-disabling event in human history. For patients, LC not only has implications for quality of life but also for meaning in life: how one’s life and the world are understood and what is seen as valuable in one’s life. This qualitative empirical study used a Constructivist Grounded Theory approach to investigate the meaning in life of people struggling with LC through ten patient interviews. This study shows that patients lose their prior understanding of life and come to a changed meaning in life, in part due to the experienced (social) isolation and loss of (both physical and cognitive) abilities caused by LC. Moreover, patients struggled with acceptance, uncertainty, and the inherent incomprehensibility and uncontrollability that living with LC entails, though this simultaneously co-existed with hope, optimism and acceptance. Additionally, dimensions of meaning intersect; a patient having some understanding of their illness (dimension of meaning: comprehension) required an understanding Other (dimension of meaning: connection). Emerging from lockdown brought the challenge and isolation of adjusting to chronic illness in society as usual (albeit divided about COVID-19 measures). This study thus offers novel insights regarding changed, present, and sought meaning in life for LC patients.

KEYWORDS:

• Meaning in life
• meaning-making
• Long Covid
• chronic illness
• epistemic injustice

Disclosure statement

No potential conflict of interest was reported by the author(s).

Ethical approval

Approval of the research plan was obtained from the ethics committee of the University of Humanistic Studies. According to Dutch law, this study did not require any further ethical review.

Data availability statement

The authors confirm that the data supporting the findings of this study are available within the article according to FAIR principles (Findability, Accessibility, Interoperability, and Reusability).

Authors’ contribution statements

This article is based on the empirical research of ML. ML collected data, transcribed interviews, coded transcripts, and wrote memo’s. AN helped ML design the research, discussed findings, and took part in the revision process.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/17482631.2023.2289668.

Notes

1. One of the ten participants was too ill for an interview and thus answered the interview guide questions in voice memos totalling over an hour, with follow-up questions answered in writing.

2. The full selection of images can be provided by the authors on demand.

Additional information

Funding

No funds, grants, or other support was received.

Notes on contributors

Marishelle Lieberwerth

Marishelle Lieberwerth has a bachelor’s degree in Humanistic Studies. Currently, she is a second-year Humanistic Studies master’s student and a Teaching Assistant at the University of Humanistic Studies. She is also active as an intern in the field of hospital chaplaincy. Her interests revolve around how people experience meaning in life, in particular when the fragility of life and social injustice are experienced.

Alistair Niemeijer

Alistair Niemeijer’s line of research focuses on precarious practices of care and well-being of and for the (chronically) vulnerable. He has (co-)authored scientific articles in a diverse range of scientific journals and has also contributed to several Dutch media outlets and policy reports on topics related to medical and care ethics. Having both a chronic illness and a young son with Down’s Syndrome and epilepsy, Alistair is intrinsically and professionally motivated to carry out research which is aimed at understanding better what it means to live with a chronic disease or disability and what the everyday aspirations of caregivers entail. Currently he works as an assistant professor in care ethics at the University of Humanistic Studies in Utrecht.