Neverland: A Critical Autoethnography of Aging with Cystic Fibrosis

Authors

Alexandra CH Nowakowski, Florida State University College of MedicineFollow

Abstract

In this autoethnography, I analyze stereotypes and misconceptions about people with cystic fibrosis (CF). I examine these illness representations and their social underpinnings through critical analysis of my journey to conclusive diagnosis with CF after first being tested for the disease in early life, and the events that have followed from that turning point. Using experiential data and prior research, I explore and refute harmful misconceptions about life with CF. I challenge the notion that people with CF never grow old. I also contest the idea that people who receive conclusive diagnoses during adulthood only then transition into patient identities. In doing so, I compare and contrast my own experiences with evidence from other patient narratives. I engage lived experiences from both outside and within the CF community to explore intersectional perceptions of aging. By giving voice to the diverse realities of aging with CF, I illuminate larger gaps in the illness management literature and the health care services it informs. I conclude that narrow representations of illness experience can ultimately impede quality health care and social support for people aging with CF, and that centering diverse patient voices can positively transform both clinical and community experiences.

Keywords

Chronic Conditions, Illness Management, Critical Autoethnography, Aging, Cystic Fibrosis

Author Bio(s)

Dr. Alexandra "Xan" C.H. Nowakowski is a medical sociologist and public health program evaluator. Their work focuses on health equity in aging with chronic disease and is informed by their own lived experiences with cystic fibrosis. Dr. Nowakowski presently serves as an Assistant Professor in Geriatrics and Behavioral Sciences & Social Medicine at the Orlando Regional Campus of Florida State University College of Medicine. They also co-founded and continue to edit the "Write Where It Hurts" blog on trauma informed scholarship. Correspondence regarding this article can be addressed directly to: xnowakowski@fsu.edu.

Acknowledgements

I am grateful beyond words to my spouse, Dr. J.E. Sumerau, for their unwavering support in turning the challenges of life with CF into ways of giving back to the community. I am especially grateful for their generosity in sharing their extensive knowledge and skill in autoethnographic inquiry as I was beginning, with much trepidation, to do this type of work several years ago. Thank you for believing in me then and now, J. I love you so much.

Publication Date

6-16-2019

Creative Commons License

This work is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 4.0 International License.

DOI

10.46743/2160-3715/2019.3549

Recommended APA Citation

Nowakowski, A. C. (2019). Neverland: A Critical Autoethnography of Aging with Cystic Fibrosis. The Qualitative Report, 24(6), 1338-1360. https://doi.org/10.46743/2160-3715/2019.3549