The journey of the lone protagonist, forgotten and consigned to oblivion, is the plot of innumerable movies, dramas, novels, and historical narratives. Something about a single individual, whether stranded and alone, battling the elements or striving to find meaning in the chaos of modern day life, calls to something within. Often the protagonist is confronted with a seemingly impossible conflict, and resolution requires periods of intense isolation. In other iterations, the hero is abandoned by the group or cast out in exile and forced to seek some deeper knowledge and understanding within.
A recent book I have been reading tells a similar story, though it is about a two-century-old mathematical model that has slowly survived academic and intellectual battles. Once celebrated two hundred years ago, the Bayesian theorem fell into disuse. For a time it disappeared almost entirely from notice. Though it was a crucial tool for breaking the Enigma code of German military communications during World War II, the methods used were classified by Winston Churchill. Now Bayesian statistics has finally achieved its heyday at the dawn of the dawn of the 21st century thanks to its utility with Big Data. To my surprise, even stories about a mathematical theorem can be told as a narrative of struggling against odds and surviving.1
Living with a chronic illness is just such an unseen story.
What I find missing from these prototypical narratives that permeate popular discourse, is that not all isolation is glamorous, results in the discovery of inner truth, or is a journey of new discoveries. Living with a chronic illness is just such an unseen story. The isolation that can come from having friends and family minimize what they often do not see and cannot know is a devastating neglect of a very basic social need of mutual understanding, empathy, and a sense of belonging.
I often encounter the claim that the Internet is creating more anonymity and social isolation rather than bringing people together and that human communication is losing authenticity. Though I can see some truth in the viewpoint, in terms of having a chronic disease, I find the opposite is true. Though anonymity exists online and I will likely never meet the many people whose essays, thoughts, and comments I read...
I find that just knowing that others are also striving through this type of suffering brings me determination and hope.
The story of an individual suffering with a chronic illness may not be glamorous, or the plot of the next blockbuster or best seller, but it is a powerful one. Millions of people throughout the world go about their daily lives in intense pain, frustration, and disappointment. They often do so with few (if any) in their immediate circle who understand. That requires daily courage. That requires immense perseverance. It is a story worth telling.
When was your last flare?