Chronic Illness Turned to Education and Empowerment

Barby Ingle had it all. She had just been hired by Washington State University as the head coach of their spirit programs, started her own cheer and dance training company, and was living the post-collegiate life and was well on her way to success.

In 1997, Barby was in pain—excruciating pain. After a visit to the doctor, she underwent a full hysterectomy due to endometriosis and then, in 2002, she was diagnosed with Reflex Sympathetic Dystrophy. What is RSD, you ask?

RSD is a chronic illness that affects the sympathetic nervous system. The R stands for Reflex, the S stands for Sympathetic and the D stands for Dystrophy. The pain is so intense that it feels as if your body is burning from the inside out and nothing can put out the flames.

But RSD isn't all that Ingle suffers from. Add in the mix of kidney stones, gallstones, seizures, vertigo, and colitis, and many more illnesses, plus injuries from cheerleading and dance; most people would just give up and not fight the rest of the battle of life with chronic pain.

With misdiagnosis after misdiagnosis, Ingle has written books about her journey with the US healthcare system. After her initial diagnosis in 2002, she was bed-bound and had to use a wheelchair to get around. Once a young professional, Ingle was hit hard by diseases.

"It took 3 years to get a proper diagnosis and another 4 years to get the proper treatment that got me walking again," Ingle said.

Ingle has since been involved in multiple conferences, speaking out about awareness for chronic illness and patient education. She is the current president of iPain, or the International Pain Foundation. Through her work with iPain, she works year round to bring awareness to those who battle with chronic illnesses.

"I advocate for all who are challenged with a condition involving chronic pain as well as their family, caregivers, healthcare professionals and public. My hope is that my speaking engagements and books will inspire others to be filled with HOPE and motivation to also fight for the best care available to them," Ingle said.

Nervember, which is celebrated all November long, is one of Ingle's biggest awareness months. The month of November is Nerve Pain Awareness Month, and iPain hopes to spread awareness throughout the month and year of those who battle with nerve pain.

iPain's goals are focused in four main areas: Education, Awareness, Community, and Access to Care. With education comes awareness, and with awareness, the spark of public discussion comes into play. When discussion happens, people who share the same pain can connect and help others find access to care.

iPain's newest creation has been made through music. Music is known to be a healing power, and as such, "Hope is True" was born. Though the artist is being kept a secret, it's an ever present reminder that hope is an important part of fighting through any trouble, health related or not.

"I had a dream one night about the song and how it changed the world for the better. As a dancer and cheerleader, I know how music can change a mood, setting, and mindset. I wanted to create this Music Moves Awareness project to show how music can bring people together and also physically help pain patients at the same time," Ingle said.

Barby's journey with RSD and chronic pain has helped so many and has given hope to those who fight on a daily basis to never give up. Through books and music, Ingle is just trying to help bring change to the way healthcare is handled for those who suffer from chronic pain.

"We are constantly creating and innovating resources for the chronic pain community and will continue in our main areas of patient education, public awareness, social events for patients, and access to care for all," Ingle said.

To get involved with iPain, you can visit their website. Do you have the nerve to be heard?