Academic journal article The Qualitative Report

Neverland: A Critical Autoethnography of Aging with Cystic Fibrosis

Academic journal article The Qualitative Report

Neverland: A Critical Autoethnography of Aging with Cystic Fibrosis

Article excerpt

Introduction

In a previous autoethnography (Nowakowski, 2016b), I outlined the duality of social constructions of chronic conditions with visible consequences. I used an illness as deviance framework to analyze experiences of visibility and invisibility within different social environments and contexts and illustrated connections between these two components of the visible chronic illness experience. Within this framework, I explored how representations of chronic conditions are formed and adapted, and how these representations can both offer valuable information about what people with specific diseases experience and reproduce structural inequalities that deepen the disadvantage associated with chronicity.

When I wrote the original article, I incorporated unique insights from my life with a chronic condition that was both severe in symptoms and ambiguous in diagnosis. However, I also mentioned that my disease was very similar to cystic fibrosis (CF), a genetically inherited disease of the mucous membranes that causes severe damage to multiple organ systems. Indeed, the question of whether I had CF had been raised at multiple times. I was even cared for in childhood by a doctor who was convinced that I had the disease but received no follow up after early adolescence. About three months after my article appeared in print-just before my 33rd birthday-I was in fact diagnosed with CF. Several weeks later, I attended an annual conference to connect with other scholars doing qualitative health inquiry. There I presented my research from that first article to a diverse group of researchers who championed the value of autoethnography for critical analysis of illness experience. Critical autoethnography lends unique perspective to analysis of lived experience by both amplifying and challenging the author's personal standpoints (Holman Jones, 2016). Rather than presenting the article in its original context, I chose to contextualize and reflect upon it through the lens of the new information I had learned about my disease.

Creating dialogue around the simultaneously unsurprising and shocking reality of being diagnosed with CF at 33 years old allowed me to enrich the concept of duality that played such a key role in the original manuscript in three different ways. First, it elucidated how receiving a more conclusive diagnosis often assuages some ambiguities of the illness experience while enhancing others and introducing new ones. Second, it illuminated the fact that many people do not realize it is possible to age substantially with CF, let alone meet anyone who can help to debunk the notion that people with this condition never get old. Third, it exposed how other people living with CF may simultaneously connect with other patients on a very fundamental level and know very little about their individual experiences-of aging or anything else. All of these additional axes of duality reflect back on the central notions of visibility and invisibility that anchored the original article.

I realized in that moment that the unlikely sequence of events leading to my eventual diagnosis with CF represented a unique and valuable opportunity to enrich the qualitative literature on chronic illness further. I was living with something quite literally construed as a never event: surviving to age 33 with a relatively mainstream physical presentation of a disease that often kills in childhood, and then finally getting a diagnosis after more than three decades of false starts. My CF had been lurking inside of me that entire time, simultaneously visible and invisible to both myself and others. Likewise, the permanent damage done to my body by those 33 years is sometimes visible to others and sometimes not. But what struck me most of all was realizing, as I followed this thread of inquiry ever deeper, that I had become an invisible population within a very visible one, largely because of inaccurate stereotypes of how CF presents in the body and impacts people's lives. …

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