Rare Disease
On Writing My Rare Disease Memoir
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I have always wanted to write a book. I just never planned to write about my rare disease. It started as a graduate class assignment. During the spring of 2020, I took an elective class called ‘Race in Contemporary America.’ The final assignment was to write our own autoethnography of race. Mine began: “I cannot write my story of race without writing about rare disease. I have been very sick all of my life.” When I was complete, the document was twenty-three pages. After I submitted the paper to my professor, I was so emotionally exhausted that I did not do much work for a month afterward.
I was born with a rare metabolic condition called phenylketonuria, more commonly known in its abbreviated form as PKU. In this context, the only important facts to know about the disease are that it is lifelong, and the symptoms are neurological, but patient compliance to treatment greatly determines the degree of impact. In my paper and throughout my life, my disease story wove itself into the larger narrative of race and diversity in America.
Of course, it is not self-evident that a perspective on intersectionality would have been the outcome of my condition. But my disease made me an outsider in my predominately White, middle-class, suburban environment. While I was never overtly ostracized by my peers, I also never really felt like a participant in my own culture either. The ones who were often on the sidelines with me were not White, and they became my friends too. I preferred spending time with people who were not affirmed by White normative standards, likely because of my own ‘other-ness’. And thus, diversity of friendship was normal and common to me. I did not realize this was also a rarity until recently.
I wrote my paper during the height of the George Floyd protests, with the constant wail of sirens and whirring of an overhead police helicopter as the soundtrack outside my Chicago home. When I received initial feedback from the professor, I determined it was going to become a book. Because what I do know is what it feels like not to be believed; to be minimized or invalidated over difference of experience. My illness is cognitive and invisible. It is discrete to my body and recognizable only to people that live with the condition.
