When you have a chronic illness, learning everything you can about it is both a blessing and curse. The part of me that’s a researcher and a digger at heart, the one who simply can’t get enough information, gathers it nonstop from a variety of sources; after all, knowledge is power.
However, there’s another part of me that is absolutely content to stay in the dark about my condition, to stick my fingers in my ears and repeat, “Naaa naa naa naaa” over and over again.
After all, why waste time and energy to learn if doing so won’t change anything? Why stress about my multiple sclerosis (MS) if there’s no way (as of yet) that I can be cured? And these two instincts — to know and to push it all under the rug — are constantly at odds, which leaves me feeling isolated from those who never have to make such a choice.
One of the ways I scratch the itch is by reading biographies and autobiographies written about and by people who have gone 10 rounds with an illness and lived to tell the tale. My latest read, Brain on Fire: My Month of Madness by Susannah Cahalan, sent me deep into the world of anti-NMDA-receptor autoimmune encephalitis. (And you thought your condition was a mouthful!)
In this book, Cahalan, a journalist for the New York Post, chronicles her month-long descent into madness by piecing together her own sketchy memories, doctors’ notes, her parents’ journals, and other sources. And the result is a terrifying glimpse into just what can happen when a person’s body is pitted against her brain. Thankfully, doctors solved her medical mystery, and by writing the book Cahalan is helping others who present with the same symptoms.
Statistics of power
Toward the end, Cahalan discusses the feelings of survivor’s guilt that people who recover from illness face, and she also brings up some interesting information about these kinds of diseases. She writes: “Although anti-NMDA-receptor autoimmune encephalitis is rare, it is one of the more than one hundred different types of autoimmune diseases that afflict an estimated 50 million people in the United States, a staggering figure that has more than tripled in the past three decades. An alarming majority of autoimmune diseases — around 75 percent — occur in women, affecting us more than all types of cancer combined. Autoimmune diseases are more likely the number one cause of disability in women of all ages.”
Think about that for a minute.
MS is one of 100 different diseases — everything from Addison’s disease to Wegener’s granulomatosis — that affect 50 million people, 75 percent of which are female. We are far from alone. In fact, we’re in better company than we can imagine.
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