Barby is the winner of the 2016 Lifetime Achievement award. She is a patient leader, motivational speaker, author, and President of the International Pain Foundation. Learn why she does it and her greatest advice for other patients.
I advocate for all of us challenged with a chronic care condition involving chronic pain as well as their family, caregivers, healthcare professionals and public. Why do I do it, because an 8-second accident changed my life.
I was living my dream. I trained and performed cheerleading, dance, and gymnastics starting at age 4 through college. Straight out of college I started my own cheer/dance training company. A year later I was hired by Washington State University as the head spirit program coach.
I have been battling chronic pain since 1997. First with Endometriosis which resulted in a full hysterectomy and left oophorectomy. Then in 2002, I developed Reflex Sympathetic Dystrophy (RSD), is a progressive neuro-autoimmune condition that affects multiple systems in the body and needs to be treated early so that disability does not take over and many secondary conditions. I lost my physical abilities and was bed bound for years. Using a wheelchair to get to get out of bed to go to doctor appointments.
It took 3 years to get a proper diagnosis and another 4 years to get the proper treatment. I know firsthand how hard it is to continue looking for relief, perfect answers, and then coming up against healthcare professionals who blow you off or do not believe what you are saying could be what you’re experiencing. That’s when I turned my skills from cheerleading physically to being a mental cheerleader – a Cheerleader of HOPE.
As I search for a cure, I have become my own best advocate and work sharing the information so that others do not have the same life struggles that I have. Even after seeing over 100 healthcare professionals, having major surgeries I didn’t need, complications such as internal bleeding, medication interactions, kidney stones, tumors, severe constipation and so much more – I did not give up or give in!
I was tested to my limits and realized they are past the boundaries I placed on myself. I had to become the Chief of Staff of my Own Medical Team. If I can do it, anyone can. We all just need support and HOPE!
I am most proud as an advocate when I get positive feedback. Especially from people I don’t know and are only connected to due to my advocacy efforts. When they say I helped that’s when my efforts are validated. The best time was right after a television interview I did aired and the phone rang. It was a woman who said she had been lying in bed waiting to die for 7 years. She has the same medical condition as I do. When she saw me she realized her doctor was wrong and that you can have a life even when living with something as bad as RSD. It was like talking to someone who got me, and was being reborn into a new person because I shared. That was a moment that is unforgettable.
My biggest challenge is learning to ignore the haters and bullies in the pain community. The more I accomplished the more they attacked. Its only a handful of people. I now remind myself that there are 7 billion people on earth. I am not going to connect with everyone and if I do make a bad connection that I can let it go guilt free. I don’t have to participate in a bad communication. I can remain positive and I do remain positive.
Keep working towards your goals. Sometimes they seem small and challenges pop up that prevent you from accomplishing them as fast as you would like. A wise mentor once taught me the best way to eat an elephant – one bite at a time. Same goes for lifetime accomplishments. You don’t fail until you give up. Keep going!
My secret to leading award winning advocacy efforts is learning to ignore haters and bullies. I choose not to shake a bullies hand or even engage with them no matter how hard I want to defend myself. I also learned that not everyone wants help. So, I do the best I can do to fulfill your life purpose and you will help others along the way. They must want the help we can’t force it. We can only share our experiences and in doing that we give others hope, help, and understanding.
I balance blogging, writing, tweeting and social media by being very organized in when I need a break being sure to take it. I have over worked myself and past my physical boundaries only to find that it holds me back having flares and coming out of remission. If I take care of myself first and then do what I can to help others, knowing that is enough, I continue to make a difference and better the world in the process.
One in three people (116 million) in the United States are affected with a condition that causes pain, so it is bound to affect you or someone you know. But until you feel the pain it is difficult to understand all of the challenges it brings on. Whether physical or mental, pain can and will consume you if you allow it to and only the patient can begin the process of healing! My hope is that my speaking engagements and
books will inspire your eventual transformation filled with HOPE and motivation. I want people to know that Hope is True. We will fight for better access to proper and individualized care and nothing can turn us down. We are a united, we know what to do, and we will win the struggle.
About Barby: chronic pain educator, patient advocate, and President of the International Pain Foundation, as well as a motivational speaker and bestselling author on pain topics. She has been a pain patient since developing endometriosis in 1997, and reflex sympathetic dystrophy in 2002. She began mentoring other patients in 2006. Barby also serves on the board of advisers for CureClick, WEGOHealth, is a member of SPPAN, and a founding member of CPATF. Follow her on Twitter.