Inspired to take action by speaking out about pain and seeking out the help we need

How have you been able to get people to realize they should share their story
by Barby Ingle

When I first began to deal with the symptoms of reflex sympathetic dystrophy (RSD) 11 years ago, it was life changing. It took nearly 3 years just to get a proper diagnosis. I felt alone, isolated, and I didn’t have the knowledge to get through the system on my own. Through all of my surgeries and complications I had hope that I would find relief someday.

As I was searching for help, I realized that each time I spoke out about what happened to me I was providing HOPE to others who are going through similar situations. As a cheerleader who could no longer perform physically I redirected my efforts to become a cheerleader of hope. Before that happened I had to become the chief of staff of my medical team and be my own best advocate. I keep a positive mental attitude even on my worst days. I did this by being responsible for the treatments I chose to undergo. I learned to say no, when I needed time to do more research and ask questions. Most of all, I learned that the only way I could be a source of hope for myself and others was to share my story and encourage others to do the same. I began speaking out to anyone who would listen.

Sharing our experiences brings other patients a more timely diagnosis, access to appropriate care, and proper treatment options for many pain conditions.  I have had doctors tell me that because of hearing my story, they were able to recognize and diagnose others quicker. This showed me that speaking out has a large impact.

Putting faces to pain is helpful in reducing the societal stigma of chronic pain. The spotlight on chronic pain advances public knowledge and helps society better provide for its pain citizens. With over 100 million Americans in pain we make a difference by sharing our pain stories. We are not alone in the fight against pain; we should not feel that we are with so many others facing issue.

We need to shine the biggest spotlight on pain issues that we can. I have turned my efforts to celebrities that deal with pain or have a family member who deals with pain, and asked them to share their spotlights. Many have joined with me to do just that including Paula Abdul, Ace Young, Diana DeGarmo, Scott MacIntyre, Kirsten Storms, and Jerry Mathers. Through these efforts I have learned that the more people share their story the more others have hope, inspiration, and better access to healthcare. Putting a face to pain makes it easier for those patients and their loved ones who are diagnosed in the future.


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