If the Institute of Medicine is right, there are 100 million Americans who suffer from chronic pain. Many of them, the IOM says, are undertreated.
Cynthia Toussaint of Los Angeles is one of those Americans.
Ms. Toussaint chronicles her extraordinary 30-year battle with and against chronic pain in a memoir: Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.
Ms. Toussaint and her life partner of 33 years, John Garrett sat down for an interview with the National Pain Report to talk about their experience, the book and the lessons they are trying to share with other chronic pain patients, especially women.
Cynthia was an aspiring ballet dancer who was finding professional success in Southern California when she felt a burning sensation behind her knee. As ambitious athletes are sometimes prone to do, she continued to dance and perform while trying to endure the pain.
“It felt like my leg was on fire,” she said, “but every time I spoke with a doctor about the problem, I was essentially told ‘it was all in my head’.”
Thirteen years later, it was finally diagnosed as Reflex Sympathetic Dystrophy — today known as Complex Regional Pain Syndrome (CRPS) — a chronic pain condition that can affect any area of the body, but often an arm or a leg.
In her book, Cynthia is highly critical of the doctors that treated her. Those 13 years were “pure hell” she says.
“I couldn’t speak for five years, and was bedridden for ten. I contemplated suicide. I tried to hurt myself and, at times, I just hated everyone and everything.”
John met Cynthia in college at UC Irvine, he an aspiring actor and she the dancer, and never left her side. John shares his feelings at the end of each chapter in the book.
“To say that our relationship was tested is an understatement,” said Garrett. “The pain that she suffered didn’t play by the rules, but here we are today.”
Toussaint has turned her considerable energy into a role as an advocate for chronic pain patients.
Her experience has made her skeptical of the medical profession and urges patients to “be in charge of our own pain.”
She has also become politically active and testifies often in Sacramento on state health legislation.
“I also talk a lot about gender bias,” she said. “More women suffer from chronic pain that goes undiagnosed and undertreated. I’m hearing from many women who share their stories and thank me for going public with mine.”
Life for Cynthia and John is better these days.
Cynthia is physically active again after almost two decades without exercise. She swims 60 laps every morning and is able to do pilates .
Her voice came back, she is singing again and the non-profit organization she and John started, For Grace, is promoting these issues including an annual Women in Pain Conference held each September.
She does this because she remembers and wants other chronic pain patients to know that she understands.
“Because I was candid about my mal-adaptive behaviors in Battle for Grace, women have confided to me their unfortunate choices – such as self medicating, domestic violence and literally committing crimes as a cry for help, all in the pursuit of just trying to feel normal again,” she said. “It is a conversation about the “unspeakables” that we all need to have as chronic pain patients, loved ones and caregivers. That’s why I wrote this book.”
(Editor’s note: We have asked John Garrett to write a future guest blog for the National Pain Report to talk about the challenges that loved ones and caregivers face with chronic pain patients. If you know of other patients and loved ones who would like to share their story, please contact us at the National Pain Report.)