These five people, and many like them, chose to cope with chronic pain by taking action. Whether they’re raising awareness, providing support for the community, or pressuring politicians for more research funds, advocates help bring about change that can benefit thousands of individuals. Their firsthand experience of living with a chronic pain condition gives them a unique — and personal — perspective that immediately helps them connect with the broader community.
Experts say that advocacy begins at home. “The best advocates are those who have advocated for themselves. It’s hard to advocate for others if you haven’t done it first for yourself,” said Lynn Matalanna, founder and current president of the National Fibromyalgia Association.
The first step is to learn about your chronic pain condition as much as possible. Then work with your doctor and support team to come up with a treatment plan that ensures pain relief and positive quality of life. Don’t be afraid to ask your doctor or medical team questions, and keep asking until you get a proper diagnosis and answers.
For those who feel called to do more but don’t know where to start, we asked five well-known and up-and-coming advocates how they got started and for tips on how to get involved.
Courageous advocate • Penney Cowan
Penney Cowan, founder and CEO of the American Chronic Pain Association (ACPA), understands the personal needs of the chronic pain community first hand. Her journey with pain started in Pittsburgh in the mid-1970s. As the mother of two young children, Cowan started with neck pain that traveled to her arms and legs.
Like so many chronic pain sufferers, she felt like she was dragging down her family. She was so depressed, she thought it would be better if her husband left her. He never did, staying by her side to get her help. Cowan traveled to the Cleveland Clinic and was diagnosed with fibromyalgia in 1979. After three weeks of exercises and physical therapy in its pain management program, Cowan started to experience some pain relief and realized she would need a wellness plan for the rest of her life.
When she returned home she started sharing her story with others. Cowan realized that a lot more people were suffering in silence who needed help. She started a support group in her local church. At one point, she was leading seven support groups around Pittsburgh. Cowan also developed several manuals and materials about coping with and managing chronic pain.
Working out of her garage, she started ACPA in 1980. Cowan eventually created a board of directors, which helped her spread the word and start support groups around the country — and eventually around the world. At one point, ACPA had about 900 support groups in 25 countries. With the advent of online support networks, the number of support groups is now around 200, but the ACPA provides a tremendous amount of information on its website for patients and their families.
Cowan’s advice to others who are interested in becoming advocates for the chronic pain community is believe in what you’re doing. “Don’t let people say you can’t do it,” she said. “Do it for the right reasons.”
Community activist • Cathy Cartwright
Cathy Cartwright owes a lot to Cowan and the ACPA for encouraging her to overcome her battle with chronic pain. In 1998, Cartwright was working as a substance abuse counselor at a California-based hospital when she suffered a life-altering fall at work. Her lower body twisted one way and her upper body twisted in the opposite direction, which resulted in bulging disks. She was eventually diagnosed with fibromyalgia and arthritis from the injuries.
She eventually had to give up working and curtail her activities until she ended up in bed for nearly eight years. “I was sleeping for 15-minute intervals because my pain was out of control and completely debilitating,” recalled Cartwright. She began epidural shots that provided significant relief and continues them today every four months along with other medications, exercise, a healthy diet, and a positive attitude.
Cartwright was not only looking for pain and symptom relief, but also seeking emotional support. She discovered ACPA’s online resources, including its support groups. There were no local groups so she started a face-to-face peer support group on her own. “That group helped me more than I even realized. It’s a joy to help others because we learn from each other.”
Cartwright is now ACPA’s regional director of Northern California and is thankful that she found her voice to help others. “From a young age, I learned to fight for myself and advocate for social justice,” said Cartwright. “I’ve never looked at myself as a victim and was determined to give back to a community that gave me so much.”
Brave fighter • Trisha Hall
As a former marine, Trisha Hall is used to fighting for what she believes in. She suffered a career-ending traumatic brain injury in 2006, and fell into poverty, and was homeless for three years. “I served my country honorably, but I fell through the cracks like so many veterans,” said Hall.
Without access to adequate medical care and benefits, she struggled to stay alive and recover from her injuries. Through hard work and determination, she scaled her way back like a tough warrior.
She got involved with the Thank a Vet program, which helps veterans transition from military service to civilian positions through mentoring, training, and education.
Hall wanted to do even more for veterans and other under-served communities. In 2016, she founded Operation R.R.R. (Rescue, Restore, and Rehabilitate) to help disenfranchised individuals who are suffering with pain and disabilities get back on their feet. The organization is still in its infancy and doesn’t have offices or support groups like other nonprofits, but Hall has ambitious goals.
In Los Angeles, Hall organized several volunteers to help homeless veterans living on the streets to provide food, water, clothing, and personal hygiene kits. She also wants to raise awareness about the health disparities of veterans, homeless, inner-city youth, and LGBTQ community who are suffering in pain.
“I’m good at being in the trenches and pulling people back up,” said Hall.
Cheerleader of hope • Barby Ingle
As a former cheerleading captain turned chronic pain advocate and author, Barby Ingle has one of the most unique resumes in the chronic pain community.
After cheerleading through college, Ingle landed her dream job as the head coach of the spirit program, overseeing the cheerleaders, dancers, and mascot, at Washington State University. She was unstoppable until a car accident in 2002 sidelined her career. She experienced what was thought to be severe whiplash. She tried to continue working, but was so exhausted she slept in her office and was forgetting important details like whether she had choreographed routines.
For three years, she traveled from one provider to another to find the cause of her problem. “No one was looking at the big picture, and just identified symptoms, but never pieced it all together,” said Ingle. She was spending more time in bed and getting around in a wheelchair. After meeting with 43 doctors, she was finally diagnosed with full body reflex sympathetic dystrophy (RSD), also known as central pain syndrome.
Ingle’s large family was a source of support during this period. Every Thanksgiving, her family chose one local charity to help. In 2006, her dad came up with the unusual idea of creating an organization to help Ingle and others cope with RSD. They formed the Power of Pain Foundation, which focused mostly on the RSD community, but eventually opened it up to include all those affected by chronic pain diseases. Ingle’s dad was the foundation president for the first few years, but once Ingle regained her strength she took over as president in 2010 and led the organization while it was renamed the International Pain Foundation.
Ingle has worked tirelessly with the Foundation to advance rights for those living with chronic pain. She does this through radio interviews, television appearances, speaking engagements, articles, and books, including her autobiography, From Wheels to Heels.
She attributes all of her leadership skills to cheerleading. “We’re taught to be hopeful even when the team is losing. I took what I learned through cheerleading and I’m going to keep cheering, but now for those facing chronic pain.”
Awareness raiser • Lynne Matallana
Fibromyalgia is on the map thanks to the work of Lynne Matallana, founder and current president of the National Fibromyalgia Association.
Matallana remembers living with pain during her childhood. She was very athletic and loved dance and gymnastics, but then she dislocated her arm, broke some bones, and faced other health issues. She and her parents didn’t know what was wrong, but she was raised to ignore pain and not talk about it.
As an adult, the symptoms worsened. “The pain felt like acid running through my veins,” she recalled. Matallana pushed on with different career opportunities in journalism, public relations, and advertising and graduated from the London School of Economics.
After seeing 37 doctors, she was diagnosed with fibromyalgia in 1995. After her diagnosis, she started massage, acupuncture, and physical therapy, improved her nutrition, and found ways to get better sleep.
In the mid-90s, fibromyalgia was still a stigmatized disease. Matallana was determined to change that by starting a nonprofit for the community. In the beginning, the group’s main focus was raising awareness of the unknown disorder. Her background in media helped her get the topic covered by countless national magazines, TV shows, and radio programs. She wrote the book The Complete Idiot’s Guide to Fibromyalgia and launched a magazine for the community.
“Starting the foundation became my purpose and I soon realized it’s what I’m supposed to do with my life,” said Matallana. “We’ve been able to bring the needs of the millions of people living with fibromyalgia to the forefront of the medical community’s discussions and the public’s attention.”