This personal narrative pleads for a supportive and comprehensive system or sub-system similar to that which exists for cancer patients, to deal with undiagnosed illnesses. By describing the torment of living with a debilitating illness that medicine could not easily recognize, then by contrasting this experience with my wife’s experience of the cancer care system, and by referring along the way to lessons learned many years ago from reading the works of the inciteful neurologist, Dr. Oliver Sacks, I hope to inspire the medical system to develop a separate, supportive and comprehensive system to deal with the undiagnosed. As it turns out, my mystery illness was a spontaneous cerebrospinal fluid (CSF) leak. This condition is all too often missed in diagnosis or dismissed, and treatment is often significantly delayed, such as it was in my case for nearly two years. At the same time, my wife experienced the cancer system, allowing us to draw contrasts between the two experiences and leading me to implore the system to draw the two approaches together by identifying some of the missing elements for those with undiagnosed illnesses. To conclude, I make reference to the relatively new Undiagnosed Diseases Network as one possible model to accomplish the above goal across the medical system or within local medical systems.

Experience Framework

This article is associated with the Quality & Clinical Excellence lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework)

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