Three things that can be done to help address the root of the challenges I am working to solve include; education, access, and awareness. Education for medical providers, patients and caregivers right now. Also expanding education for all to improve health from early childhood through adulthood. Access to proper and timely care that is individualized will come through legislation and the more education the better we will all be. The final area, awareness is for society to improve on the opportunities it gives those who face debilitating chronic conditions that are not yet understood. My ultimate goal is to allow chronic pain patients the ability to perform regular activities in the community and to bolster society’s ability to provide full opportunities and appropriate support for its pain citizens. Through supporting education for pain patients, family members, caregivers and medical professionals, we make an important contribution to the overall knowledge and treatment of chronic pain diseases.
As part of my series about “authors who are making an important social impact”, I had the pleasure of interviewing Barby Ingle, a best-selling author, reality television personality, and lives with multiple rare and chronic diseases; reflex sympathetic dystrophy (RSD), migralepsy, PALB2-var, endometriosis and other pain disorders. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker using her blog and media appearances as a platform to become a patient advocate. She presents at healthcare conferences, speaking publicly, sharing her story, educating and advocating for patients across the globe.
She has received more than 20 accommodations over the years for her advocacy work including; 2012 WEGO Health Ms. Congeniality, 2012 NAF You Are Our Hero Award, 2013 International Inspirational Luminary, 2015 IDA Impact Award, and 2016 WEGO Health Lifetime Achievement. In 2017, Barby was named a Health Information Technology Top 100 Influencer by HealthScene and Top 20 Health Influencer by Insider Monkey Magazine. In 2018, Barby received the Reality All Star Reunion Superstar award for her Social Media efforts and Top 50 Chronic Pain Advocates. In 2020, Barby is listed in the top 50 social media advocates for Rare Diseases and top 10 Healthcare Influencers for All Marketers to Follow, 2020 PharmaVOICE 100, 2020 HITMC Patient Advocate of the Year. In Feb. 2021, Barby is in the top 75 social media advocates for RareDiseases. Recently she was instrumental in the International Pain Foundation winning the Global Health & Pharma’s sixth annual Biotechnology Award for Most Innovative Biotech Non-Profit 2021 & Most Dedicated Nerve Pain Awareness Program: NERVEmber®. Barby is the creator and 2020–2021 director of the NERVEmber® project.
Thank you so much for joining us in this interview series! Before we dive into the main focus of our interview, our readers would love to “get to know you” a bit better. Can you tell us a bit about your childhood backstory?
Thank you for this opportunity to share some of my personal story and journey. I was actually born in Bangkok, Thailand along with my adopted sister. I have two biological brothers as well, one older. We moved to the United States when I was about 4 years old. Although I do not remember much of my time in Thailand anymore, my parents often reminded us of where we were born and what life was like there. I participated in soccer, track team, dance, cheerleading, choir, gymnastics, girl scouts (from brownie to cadet), student government class representative, modeling and beauty pageants. We were always quite busy with each of us doing activities together and some special activities on our own. Another thing that made my childhood unique was that I was diagnosed in 1st grade with a severe learning disability. My parents sued the school district in court and were able to get me and other children at our school access to special education. I remember my elementary school principle telling me that I would never graduate high school. It turned out that I graduated college in 4 years, something that neither of my older siblings were able to do. I was able to use the extra help and individualized learning experiences to excel as a student. Although I did not receive my first A in school until the 4th grade despite giving all my best efforts, I finished my last semester of college with 21 credit hours of classes and a 4.0. A theme that continued in my life, I did not give up or give in. I kept going and success was there for me to achieve.
When you were younger, was there a book that you read that inspired you to take action or changed your life? Can you share a story about that?
Due to my learning disability, I did not like to read or write. Little did I know that I would later in life be told I was a great prolific writer and how much my books and writings meant to so many people around the world. One book I did read from cover to cover when I was younger was Atlas Shrugged. I went through that book with a highlighter and pen making notes all the way through and attribute many of my abilities to fit into any social situation to what I learned in that book. I saw myself in multiple characters in the book over time and as I learned. I still suggest that book to others as it is one of the best books I have ever read.
Can you share the funniest or most interesting mistake that occurred to you in the course of your career? What lesson or take away did you learn from that?
The most interesting mistake I learned through the process of my career, as an author has been that on my first two books, I did not hire an editor and had typed pubic instead of public. I never caught it on my own. A doctor who purchased the book (after thousands had already been sold) let me know at a public speaking event I was presenting at. Therefore, some people out there who have purchased that book have the original version, funny how they did not point this mistake out to me. Maybe they were embarrassed for me or maybe they read the word as intended instead of as written. Either way, it taught me a big lesson — pay for a good editor.
Can you describe how you aim to make a significant social impact with your book?
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. According to the World Health Organization, 1.5 billion people globally are affected with a condition that causes pain, so it is bound to affect you or someone you know. 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 books will inspire an eventual transformation filled with HOPE and motivation while providing better access to care and options. I have authored 9 books and am working on 4 more. I always think, I am done but continuing life with a rare disease and chronic pain, so much information has come to me and more books are warranted. I believe the most significant impacts socially are from 2 of my books — From Wheels to Heals and Aunt Barby’s Invisible, Endless Owie. From Wheels To Heals is about my journey of developing a rare disease, being wheelchair bound and overcoming the challenges this brings into our lives as patients and for our caregivers. I have had professors use my books as class materials in medical school classes as well as support group leaders buying copies for all of their members. I wish we were all taught how to navigate the health system earlier in life so when someone we know develops a chronic condition we can get help faster and access to the treatments we need. The healthcare system is not always what we are led to believe. Unfortunately, so many other patients experience my story. I now share my knowledge of overcoming the challenges that we face every day with our activities of daily living. I had to learn the hard way and now I pass on my knowledge to give hope and answers to all patients, caregivers and healthcare professionals. I hope by speaking out about my journey stops it from happening to anyone else. My social impact with Aunt Barby’s Invisible Endless Owie was on youth. I am not able to have children of my own, but I have seven nephews and a niece. The older four are great, but our relationship is not. All they were taught of me is do not touch Aunt Barby, be quiet around her. They were afraid of me. With the youngest four, I was able to use the book to set the expectation from a very early age and we are all very close. The book is a tool for families around the world to help them understand that just because someone is disabled does not mean that they have no abilities. We want to be social and interact to make an impact in the lives of those in our life and around the world. We have much to offer.
Can you share with us the most interesting story that you shared in your book? (From Wheels to Heals)
A month after the accident in 2002, I attended physical therapy, which was excruciating and seemed to make things worse. Finally, in May of 2005, I found my way to a pain clinic here in Arizona. My doctor took the time to listen to my history and look at my entire situation. The thought of being examined again was frightening. After an hour with me, he said he thought I had Reflex Sympathetic Dystrophy (RSD) and wanted to run yet another test. He told me he was going to stick a needle into my neck and put a chemical of some sort in my ganglion nerve bundle. If the test worked and the pain was helped even for a short time, it meant that I did have RSD, as all my signs and symptoms had pointed to all this time.
The thing is, I had a doctor four months earlier tell me that he was 100 percent sure that I did not have RSD. This same doctor did an electromyography (EMG) on me 6 times, which was awful enough, so the thought of a test that involved a needle was beyond scary. I had found a site on the web and put in my symptoms, even the ones that did not seem to fit with the others. After the site led me to an advocacy organization, I was sure I had the disease. Why didn’t my original doctors believe me? They saw the symptoms, saw me walk into walls and pass out from the severe pain and more. When my new doctor, Dr. Mark Rubin, suggested that I might have RSD, my first response was, “Dr. Steier was sure I did not.” What test had Dr. Steier done to be so sure? NOT ONE!
After finding so little information out there and having so many doctors who did not know about RSD trying to treat me, I realized that I am the one who should teach my providers. While teaching them I have learned so much myself that I was inspired to write this book. I have included tools I wish I had in my starting stages of RSD. I want you to have the whole story. In my research I have found very little literature that tells the whole story and I know how important it is to have the big picture. What information is out there? What is fact and what is fiction? What is old news and what are the newest options for patients?
Chronic or life-threatening illnesses can have a devastating impact on your entire life. I have come to realize that I am the only one responsible for my health. Many doctors who are not connected with a research hospital or university do not have the time to keep up to the minute with the latest information. RSD is just one type of chronic pain. It does not always respond to treatments that other chronic pain conditions would respond to. Even among RSD patients, there are differences in response to treatments, as RSD is a fluid disease.
What was the “aha moment” or series of events that made you decide to bring your message to the greater world? Can you share a story about that?
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.
I lost my physical abilities and was bed bound for years. Using a wheelchair from the time I got out of bed became very strenuous on my body and I upgraded to a power scooter. 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 actually be what you are experiencing. As I search for a cure, I have had to become my own best advocate and work hard at sharing the information so others do not have the same life struggles. 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 to my own medical team. If I can do it, anyone can. We all just need support and HOPE! The book does just that.
Without sharing specific names, can you tell us a story about a particular individual who was impacted or helped by your cause?
I have received hundreds of messages like this one. A patient tells me… “When I first got diagnosed with RSD, a disease I have never heard of, I went on the Internet for information about the disease. What I found was I had a horrible progressive neurological “pain” disorder. I also found that there was not much information out there but a whole bunch of chat rooms of people complaining about their “pain” disorders rightfully so. Unfortunately, 99% of them did not have RSD and I refused to let myself go to a place of negativity. While I was searching the internet for information, I decided to do an Internet search for books about RSD. The first book I found was yours. I ordered two copies of it. One for me but also one for my loved ones so they could understand what I was going through. From the moment, I started reading that book I could not put it down. It was as if I was reading my life. For the first time in five years, I felt like someone understood my pain and what I was going through. For five years, I kept telling doctors about my pain and they kept misdiagnosing it. It was not until I changed doctors that I was diagnosed. By then the disease had progressed to already having signs of irreversible damage. Your book helped my mom understand what RSD was and when I said I was in pain what that truly meant. Our relationship has never been stronger and your book is a big reason. She did not understand pain disorders like so many other people do not and by sharing your very personal story, you show what it is like to live with an invisible disabling pain disorder. I then went on to discover your foundation, the International Pain Foundation and followed on Facebook. Since I was diagnosed in September of 2012, you have been my cheerleader motivating me every day through your amazing work you do with the Pain Foundation and the books you have written. Without the book, I truly do not believe I would have been able to communicate to my mother and my husband exactly what I was feeling every day. You may wear a different uniform now but you are my true inspirational cheerleader. Please never stop believing for a second that RSD took anything away from you. As my mom says to me now when I get upset about what I used to be like. “You may never get back to that but maybe there was a reason you needed to slow down to appreciate everything around you.” Keep up the amazing work you do Barby!” — ACH, RSD Pain Patient. This makes my soul dance. I know I am fulfilling my purpose here on earth when I get life changing messages of encouragement from readers of my books.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
Three things that can be done to help address the root of the challenges I am working to solve include; education, access, and awareness. Education for medical providers, patients and caregivers right now. Also expanding education for all to improve health from early childhood through adulthood. Access to proper and timely care that is individualized will come through legislation and the more education the better we will all be. The final area, awareness is for society to improve on the opportunities it gives those who face debilitating chronic conditions that are not yet understood. My ultimate goal is to allow chronic pain patients the ability to perform regular activities in the community and to bolster society’s ability to provide full opportunities and appropriate support for its pain citizens. Through supporting education for pain patients, family members, caregivers and medical professionals, we make an important contribution to the overall knowledge and treatment of chronic pain diseases.
How do you define “Leadership”? Can you explain what you mean or give an example?
To me leadership means having trust that tomorrow will be a better day and that as a leader I get to take action and make that happen. I cannot remember a time in my life that I did not have hope. Leaders lead with hope, compassion and a willingness to get involved to make a difference. Involving a diverse population of patients, caregivers, providers and industry leaders on our projects has helped me create life-giving events, messaging, and ongoing resources as a leader. However, the hardest lesson I had to learn was that not everyone wants the help I have to offer. Leaders take chances. I cannot say I missed an opportunity, but I have taken all the ones I wanted. Not all were winners. I failed at some, but I cannot say I missed any. As a leader, I help others and I have changed their life path in a positive direction despite failures along the way.
What inspires you: A desire to do good things for the world. The joy of life, family, and friends.
As a cheerleader, we are taught that we keep going, we keep smiling, and we keep doing until the game is over. You could be cheering for a team that is losing 50–0 but you keep cheering knowing that you have a chance to make an impact that could change this outcome. In life, the game is not over until you pass away. I keep going because I know that I am fulfilling my life purpose here on earth and I only have a limited time to do it. I believe my desire to do good things for humanity is part personality that I was born with and part learned through life’s experiences. Each of us has the ability to do good things for the world in our own way, from the gifts I was given, I have chosen to be the best me I can be and that includes lifting others up along the way.
What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.
The first thing I wish someone had told me when I started, as an author was the need to be flexible with time. My first book took 6 years to write. Do not give up if you have something important that can change the lives of others for the better.
I would also want to know the values in knowing your weaknesses. To overcome them, find someone with that strength, and team up. Mine is editing. Working in teams to accomplish a goal is a great way to do it better. I found out the hard way. I did not get an editor on my first book to save money. It would be worth the funds and time to put in an investment to your work.
Next, realize that haters hate. I have learned to ignore, delete, and block the negative messages written with the purpose to pull you down. The time you spend interacting with them will not change their opinion. Your actions and continued success will. They are not worth your time. Now if it is constructive, take it and make yourself better.
People will attempt to imitate you when you reach a level of perceived success. You will be thinking you are still climbing the mountain of success, but others may strive to be exactly where you are. Your valley becomes their mountain. You can offer a hand up without letting them pull you down, or stalling your success. You do not need to compare your success with others in the same field. If you have more to do, keep going. If you can get it into one book that is great too.
Finally, knowledge equals power. Look for more options. There is always something new coming down the pipeline, do not get stuck because that is the way you have always done something.
Link to “my 5 things” video — https://youtu.be/asTPSMzMO1A
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
“DO NOT CRY BECAUSE IT IS OVER; SMILE BECAUSE IT HAPPENED” — Unknown
The physical pain I experience is severe and relentless. I have to receive help getting dressed, showering, getting to doctors, cooking, cleaning, shopping, etc. Through it all, piece by piece, I am rebuilding a life. It is different from before, but I am doing things now that I never would have without the motivation to find a cure. I am a person who never gives up, stays as positive as possible and never takes a minute of life for granted. I am now on permanent Social Security Disability. Not where I thought I would be in my lifetime. It is a big life change and it has been hard. Through all of this, I have learned that how we handle disappointment, failure and stress and how we behave is something we can control and have power over. This battle with pain I endure makes me stronger as a person. The most important thing in life is the relationships with other people in our life. With the guidance of prayer and the support of my family, I have been able to face my new life head on and with continued hope. No one can take away what I have accomplished or my life moments. Even though I could not do most of them today, I was lucky enough to get the experience in the first place.
Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂
I have met this person, I made it happen. My person is Paula Abdul. She has the same rare disease I do and we both have the dancing and performance backgrounds.
How can our readers further follow your work online?
Follow Barby’s work online –
Blog — http://barbyingle.com/blog
Facebook — www.facebook.com/BarbyIngleOfficial
IMDB — www.imdb.me/barbyingle
Instagram — www.instagram.com/kenandbarbyshow
LinkedIn — https://www.linkedin.com/in/barbyingle
Twitter — www.twitter.com/BarbyIngle
Website — www.barbyingle.com
YouTube — www.youtube.com/user/barbyallyn
Thank you for these fantastic insights. We wish you only continued success in your great work!
Social Impact Authors: How & Why Author Barby Ingle Is Helping To Change Our World was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.