“You can’t let the pain win!”
That’s what a young woman in her late 20’s battling pain from a number of auto- immune diseases told a community forum in Pasadena, California.
Arlene Grau, who has rheumatoid arthritis, migraines, fibromyalgia and lupus, was part of a panel sponsored by KPCC Southern California Public Radio for a forum on pain called “Invisible Suffering.”
(You can hear the audio replay of the forum here)
Grau, who is a mother of two young girls, was very candid why she was willing to share her story.
“Pain patients need to hear that we can’t let the illnesses change who we are,” said Grau, who estimates she’s been hospitalized ten times in the last year.
When an audience member said, “No one should have to hurt this much,” Grau said it was important not let her anger about the chronic pain she suffers overwhelm her.
“I have good days and I have bad days,” Grau told the audience. “Enjoy the good days.”
Grau was critical of doctors who have treated her in the past, saying that they didn’t listen. But she’s very happy with her physician now.
Grau also made the point that patients bear some responsibility in their treatment, and she emphasized the importance of telling your doctor everything.
“It’s best to be clear and honest with your physician.”
The panel was the brainchild of Jose Martinez, a reporter at KPCC who conceived of the pain forum because of his mother’s battle with rheumatoid arthritis. Martinez moderated the panel with Grau, Dr. Andrew Charles, professor of Neurology and Director of the Headache Research and Treatment Programs at UCLA’s David Geffen School of Medicine and Nancy Clifton-Hawkins who is a public health consultant in Southern California.
Grau’s frankness in talking about her pain, and how she deals with it was one of the highlights of the session.
“I’ve always been a positive person,” she said,” but sometimes I just need to let it out. I will scream into my pillow, and sometimes it helps.”
Audience members, many of whom are chronic pain sufferers, shared their own stories. One spoke of the frustration she feels when people, even her loved ones, don’t really understand what she is going through.
“Someone might tell you, ‘hey you look good’ and it can actually irritate me because I don’t feel good,” said the woman who didn’t identify herself.
Grau, who can no longer drive after an auto accident this spring, told the audience she’s happy to be alive, to be a mother, husband and daughter and that she plans to continue to speak out so that people can learn more about people who suffer from chronic pain.