Annual Women in Pain Conference Focuses on Relationships

Sept. 13, 2012— -- In many respects, Cynthia Toussaint is unlucky. She was a ballerina who had a role in the show "Fame." Then she was brought down by a then-nameless chronic pain disorder that left her mute and in a wheelchair for years.

But in one respect, she is lucky. She is one of the few women she knows whose partner, John Garrett, didn't leave her during years in pain. He stayed with her during the 13 years doctors told her the pain was in her head, and the 17 more as she gradually found her voice and started lending it to other women with conditions like complex regional pain syndrome (CRPS) and fibromyalgia.

"He said he never doubted me, but he did not understand it," Toussaint said. She said Garrett has taken care of her and their home since they were 21 or 22 years old. Now, they're 51. "To not leave is amazing."

Garrett said he met Toussaint in 1982 when they were 19-year-olds at the University of California, Irvine and planned to move to Los Angeles to pursue careers in entertainment. Then Toussaint suffered a ballet injury that went from "bad to worse to catastrophic."

The pain from the injury to her right leg spread through her entire body, which is typical of CRPS, though she did not know it at the time. CRPS has no known cause, but doctors suspect it is either a damaged nervous system response or an immune system response. The young couple wouldn't get a diagnosis until 1995.

"She was bedridden, housebound, wheelchair bound," Garrett said. "Everything was being turned upside down and inside out, and you don't really know what's going on."

And for years, he tried and failed to sleep in bed next to Toussaint at night as she writhed in pain.

"There's no manual, no textbook on how to take on something like this early in your life," he said, noting that most people who care for elderly parents are middle-aged. "I had fantasies of fleeing, of getting the hell out of here. I'd get in a Honda Civic and head out on the I-15 and just keep going."

Garrett worked odd hours to bring in money and still be around to take care of her. His acting career would have to wait.

Toussaint compared caring for women in pain to caring for an Alzheimer's patient: "We don't get better, and we don't die. It's just the truth."

But he stayed because he loved her, and what he really wanted was to make her feel better. He made her meals, helped her dress and even helped her go to the bathroom when things were at their worst.

Toussaint's CRPS diagnosis was the real turning point, he said. And when she founded For Grace, a nonprofit to educate and help women in chronic pain, he became its executive director.

They're about to have their fifth annual Women in Pain conference on Friday, and they have a bill on California Gov. Jerry Brown's desk to ensure effective pain treatment for patients.

There are pitfalls of being a caregiver, but he has stayed with Toussaint for more than three decades. They'll celebrate their 32nd anniversary on Sept. 15.

"Sometimes, you lose yourself. You lose your identity, giving yourself over to caregiving for somebody," he said, adding that it's important for him to reconnect with his desires and goals when he can. "If you truly love someone, you'll go through hell and high water to help them in any way you can."

Heather Grace, who has pain from a spinal injury in her neck, was not so lucky. The pain started a year after she met Jeff, the man she thought she might marry -- and three years before it would cause him to leave.

"I don't hate him," said Grace, now 38.

She had been working a desk job since 1995, and got an MRI in 2002 for her pain. The news wasn't good. It showed a disc in her spine near the base of her neck was out of place. But getting worker's compensation to pay for it was a battle, and it took until 2007 to get her spine fixed. By then, Jeff was long gone, her employer had laid her off and another spinal disc had shifted out of place.

Soon after the pain started, Grace noticed Jeff would find excuses to stay away from her, and she had a hunch her pain was stressing him out. He eventually went to see a therapist for antidepressant medication, even though it was out of character for him, and he became so stressed that he would cause a fight just to push himself farther away.

When Grace confronted Jeff about whether her pain was hurting him, he refused to admit it, she said. She realized their relationship wasn't healthy, and told him it was OK that he wasn't OK with it. Even when they tried to be friends, Jeff was "tortured" by the fact that he walked away from Grace while she suffered.

"You think you have this person that's going to be there for you at the worst time, and you can't depend on that," she said.

Gail Williamson is another woman with chronic pain, but she first began experiencing fibromyalgia symptoms when she was 7 years old, long before she met her husband. Back then, when doctors told her she was making it up, her mother would validate her pain and rub her aching legs at night.

Doctors told Williamson she was a "princess," a "blueblood" and that she "should sit on a pillow and not lift groceries or babies." When she broke her finger as a child, she once told her mother she didn't want to go to the doctor, fearing they wouldn't believe her. In junior high school, a doctor told her she was growing too fast. As an adult, Williamson worried her husband by sleeping every second she wasn't at work.

Williamson finally got her fibromyalgia diagnosis about 15 years ago, and her pain has become significantly more manageable. Like CPRS, fibromyalgia has no known cause, but it results in long-term, body-wide pain. It affects soft tissues like tendons, joints and muscles, according to the National Institutes for Health.

Now, Williamson cares for her 87-year-old mother, who is due for cataract surgery this month, but also has a pain condition called spinal stenosis, which puts pressure on her nerves.

She said the role reversal helps her to ask the right questions so her mother is on the right medications and isn't underreporting her pain to the doctors.

"It's very comfortable," Williamson said. "She cared so much for me that it's really easy to care for her at this point."

It's important for the caregiver to take care of himself or herself, too, said Donna Benton, a psychologist who directs the Los Angeles Caregiver Resource Center at the University of Southern California. Often, people don't realize their role as caregivers, and don't seek help from other people when they feel overwhelmed or isolated.

Benton likes to tell caregivers to remember the acronym CARE: Communicate, Advocate, Relax and Engage. It's also important for them to talk to other caregivers from time to time.

"Really, the hard part is for caregivers to realize they have to establish a balance between their care-giving responsibilities and doing other things," she said, adding that Garrett didn't realize he was a caregiver for years.

When it comes to relationships, she said people often think their lives will somehow get back to normal, but instead they'll have to adapt.

"You have to except that there's a new normal," she said.