For Grace: A Voice for Women in Pain
“I wanted to start what I needed when I got sick.”
Cynthia Toussaint is a woman with a mission. She wants to help women in pain get better treatment and live better lives. Originally inspired by being recognized as the "Ballerina to Bedridden HMO Victim," yet no one could remember the name of her disease, she created For Grace, a nonprofit for people living with Complex Regional Pain Syndrome (CRPS).
“I had a picture in my head of a women lying in bed with CRPS, wanting to kill herself. I wanted to stop her,” Cynthia says. She and her partner John Garrett created For Grace to provide “knowledge, awareness and resources.” She wasn’t satisfied to focus on North America, but had a goal of creating worldwide awareness. They worked with the Discovery Channel on a documentary entitled Pain Matters: Exploring Chronic Pain in America (broadcast dates this fall include November 16, December 7 and 14, 8 AM).
Women in Pain and Gender Bias
As For Grace worked to create awareness, Cynthia became increasingly aware of the issue of gender bias in healthcare. “It was always women who called. When a man occasionally called to share his story, I asked if a doctor ever said they were crazy. The answer was always no.” When women called Cynthia, they told stories of being “dismissed, diminished, offered sedatives and psychiatric referrals,” she says. “For women it’s ‘you’re 50 now, pain is normal.’ They’re told they are making a mountain out of a mole hill or told it’s hormonal. At first, I was comforted by other women sharing my experience, then I got angry — they’re all suffering so much.”
After reading an important study by Hoffman and Tarzian entitled The Girl Who Cried Pain: A Bias against Women in the Treatment of Pain, Cynthia knew what she wanted to do. “I wanted to be a voice for all these women and as loud as I could be,” she says. “I’d like to create change so women in pain are treated on an equal level as men in pain and much better than they are now.” It was natural to expand the mission of For Grace, changing the focus from CRPS to women in pain.
For Women in Pain by Women in Pain
For Grace recently celebrated their sixth annual conference. The conferences are “for women in pain by women in pain,” Cynthia’s explains. “All members of the steering committee live with pain, I call them ‘my sisters in pain.’” The theme for 2013 was Getting Real and included topics like self-care, forgiveness and creating pain memoirs in six words. This year’s conference had 125 attendees. A worldwide webcast was seen by over 3000 people, some of whom had “pain parties” and questions were submitted by social media from all over the world. A webcast of the 2013 Conference is available online.
When this conferences first started, there was some resistance from the medical field. “One doctor said that you could never put these women with healthcare professionals in the same learning environment, it would never work. But it does,” she explains. In fact, it’s a very loving and powerful day. “Nurses come up to me and say ‘now I get it,’ and ‘this will change everything I do,’ while crying.
Cynthia explains that her work has helped her personally, as well. It has “made me a better patient. I explain my problem better, more thoroughly and I’m more understanding if the doctor doesn’t get it. I am responsible for my own well-being and before the appointment, I try having an idea of what the problem is so I can pitch in and work more as a team with my doctor.”
In addition to providing resources and awareness for women in pain, For Grace is also engaged in legal advocacy. They have sponsored the Step Therapy Bill in California, which seeks to end the right of insurance companies to require that “you have to fail up to five cheaper medications before you can get the medication your doctor prescribed. You can lose your chance for a cure,” of e.g., CRPS. “It makes me very angry,” Cynthia says. The bill is currently stalled and they will not be able to reintroduce it until January 2015. Cynthia is determined, though. “I’ll never give up until the governor signs it.”
Over the next year, Cynthia, John and For Grace will be continuing their advocacy for women in pain, planning the 2014 conference and doing consulting work. Cynthia is also working on her second CD.
Lene is the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain. Her new book is 7 Facets: A Meditation on Pain.