Chronic illness and pain remains a lonely journey in a world seemingly dominated by impossible ideals of beauty, by super-soccer moms, gyms on every corner and an endless supply of drive, ambition and achievements. Most people have very little understanding of fibromyalgia. It’s hard for them to comprehend that just getting out of a bathrobe is a major undertaking. Significant others and children, whose lives are colored and affected by the limitations of a loved one struggling with pain and emotional turmoil, can only stand on the outside and look in. Those who want to understand are often held back by the pride or bravery of the sufferer—who doesn’t want to complain all the time or be perceived as not strong. On this pathway of never being well and not of our own choosing, we struggle to find meaning and achieve a balance.

“No one understands” is very true, and the isolation is as painful as the loss of all we once were. To find a friend, even one, who can relate to our footsteps and anguish is a gift that eludes too many of us. This is the primary reason I do what I do: write, talk by telephone, travel around the country to speak, hold hands, listen and finally say, “I understand.” I know how powerful those words ARE. They nearly always elicit tears. They were words I never heard said to me. A cure was never as important, to me, as being understood; I might become well but much of my life would always be a mystery to those who had never been sick.

I met Carol Hetler as part of an online support group. Her words blazed out and many of our members seized them and asked for more. Writing journals to retain our sanity, pouring out what we could not say, in Carol’s words we recognized a kindred spirit. Her story touched us and gave us more words to help us describe our disease to others. For a long time I only knew Carol as faceless words she sent over the internet; later I saw her pictures and realized that she was a beautiful, real, vibrant person. Now I can see that woman in her words as well, as she chronicles her return to health.

Carol’s words via the GuaiGroup list have touched the hearts of thousands already; now, through The Pain Behind the Mask, Volume I and II, she is reaching out further, opening her heart and soul to us. They are gifts for those of us on a lonely road, ones that will inspire and comfort. I know you will enjoy Carol as I do.

Claudia Craig Marek

Co-author with Dr. St. Amand of What Your Doctor May Not Tell You about Fibromyalgia, La Jolla, California, October 2006

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