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power in numbers

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.

There is power in numbers, too. I am one of 50 million people around the world who ask questions that are, for now, unanswerable. Who get up and face each day not knowing what kind of challenges will come our way. Who work, volunteer, raise children, give back to their communities, create beauty, and make the world more altogether lovely for our efforts. Who live boldly and bravely and utterly without compromise.

And so are you.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

 

Jamie A. Hughes was diagnosed with MS in 2004 at the age of 25. But she’s so much more than those two letters. A wife, adoptive mother, daughter, sister, friend, teacher, and writer/editor, she lives life the only way she knows how — one day at a time. An Arkansan by birth and Floridian by choice, she now lives in the Atlanta, Georgia area. You can read more of her writing at tousledapostle.com and follow her on Twitter @tousledapostle.
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3 comments

  1. Tony McD says:

    Thank you for writing this. I am not afflicted but my wife is. I am an engineer by trade and I seek to find answers and understanding and “order” everywhere I look. MS is very frustrating in this sense and I really appreciate that you wrote this article not just for the MS warriors but for the MS worriers as well.

    • Jamie Hughes says:

      Tony,

      Thank you so much for letting me know that this article helped you and your lovely wife. I too have an “MS Worrier” in my life, and I sometimes I lose sight on just how my illness impacts him. Good to know I got it “right” with this one. Keep fighting, sir!

  2. Hello Jamie,

    John-David here, the chronic pain detective.
    I’ve become very aware of MS in the last four or five years, as clients coming to me increasinly express MS as their chronic condition.
    Certainly I find George Jelinek’s approach to MS very interesting – search overcomingmultilpesclerosis.org
    but my own expertise is in the emotional context of the illness.
    Past traumatic events, often forgotten or buried, triggered by more recent stressors often manifest an autoimmune condition such as MS.
    I’d be interested in your thoughts, and indeed future discussion with you.
    With best wishes,
    John-David

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