Chapter 1 - The Crisis of Diagnosis

Summary

Recently, I was diagnosed with a life-threatening rare disease. My efforts to obtain treatment and medical care, though not as difficult as my now daily struggle to survive, reflect the inherent challenges of navigating the U.S. healthcare system and more pointedly so as a woman of color who happens to be an African American. If my life did not depend on obtaining effective treatment, all of these experiences together might have merely proven to be an inconvenience, something I might have complained about as much as I would have complained about the ill-mannered driver who cut me off while driving the other day. And, if it were just a matter of turning to any one of the powerful online search engines that exist to find effective treatment, my ongoing experience would merely resemble an ambitious trek down a mildly interesting path. This was not the case.

Early on, I decided to document and interrogate my observations and experiences about this process in a somewhat happenstance fashion. That is to say that the idea for an ethnography recounting those experiences came later. Prior to this crisis, I could not have imagined knowing about the steps involved in being diagnosed with a life-threatening illness, followed by the desperate searching for treatment and care, and ultimately obtaining life-prolonging treatment.

From the beginning, I kept a small journal in which I recorded this process, highlighting the various situations in which I found myself. I did so because of the challenge I faced in remembering what any one of the doctors and specialists to whom I turned told me. It was all very overwhelming, and the only way I could process the information (sometimes contradictory) that I received was to dutifully record it for later and sometimes multiple reviews. My first entry and each one thereafter included not only what I was told but also my observations about the exchange and my reactions to the doctor. This journal and the notes recorded serve as a basis for this text.

There is a long-standing historical tradition within the realm of qualitative research for this approach to gathering information.