In 1982, I was a 21-year-old ballerina when a minor ballet injury triggered the chronic pain disease, Complex Regional Pain Syndrome, also known as “The Suicide Disease.” For the first thirteen years of my illness, my doctors told me my physical problems were “all in my head” while the CRPS spread throughout my entire body, leaving me bedridden and screaming in pain for a decade – a pain that felt as if I had been doused with gasoline and lit on fire. I’ve now developed Fibromyalgia and Chronic Fatigue Syndrome that starve me of sleep and well-being. None of this had to happen!
After founding For Grace from my wheelchair, I birthed this Women In Pain initiative due to my personal experience and the inspiration of Diane Hoffmann and Anita Tarzian’s report, “The Girl Who Cried Pain.” I drafted my Women In Pain petition as a manifesto to rally around so women’s voices would at last be heard and followed that with my California Senate hearing and awareness month resolution in February 2004. I am excited to see this movement growing rapidly as the leadership and dedicated volunteers here at For Grace forward this effort throughout the nation.
Women’s pain being dismissed is intolerable and it is with absolute passion that I continue this work to prevent the unspeakable suffering that is happening…right now.
Cynthia Toussaint serves as Spokesperson at For Grace and has had Complex Regional Pain Syndrome for 32 years. She founded the organization in 2002 originally to raise awareness about the disease, and later developed Fibromyalgia and Chronic Fatigue Syndrome. Before becoming ill, she was an accomplished ballerina and worked professionally as a dancer, actor and singer.
Since 1997, she has been a leading advocate for women in pain, raising awareness through local, national and worldwide media as well as public speaking. Toussaint championed and gave key testimony at two California Senate hearings. The first in May 2001 was dedicated to CRPS awareness. The second in February 2004 explored the chronic under treatment of and gender bias toward women in pain (the impetus behind For Grace’s expanded mission.) Both of these efforts were the first of their kind in the nation.
Toussaint has been featured on The Discovery Channel, ABC World News with Diane Sawyer, PBS, Discovery Health, TLC, AARP The Magazine, Newsweek, Woman’s Day and the New York Times, among others. She is a consultant for The Discovery Channel, ABC News, FOX News, the National Pain Report and PainPathways, the official magazine of the World Institute of Pain. Also, she is a guide and guest contributor for Maria Shriver’s Architects of Change website.
Her many speaking engagements include the National Institutes of Health and Capitol Hill.
Toussaint is the author of Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.
Toussaint continues to be a leading advocate for health care reform in California. She was instrumental in changing public opinion which led to sweeping HMO reform legislation that was signed by Governor Gray Davis in 1999. Her focus has now shifted to bringing a single-payer, universal health care plan to all in California which will provide a model for the rest of the country.