Why Telling Your Story With Illness Can Be Life-Changing

I’m constantly asked, “Aren’t you angry that you missed out on so much in life? That things could have been different?” My answer is always the same. “No. Had I received a correct diagnosis at a young age, my life would have been very different.”

I have no doubt that had I been diagnosed with dopa responsive dystonia (DRD) right from the start, I would have gone to a different college, never met my amazing husband, Steve, and wouldn’t have my three children. This weekend I realized it’s much more than that. I am changing lives. I, Jean Abbott, am changing lives by sharing my medical journey.

It all began when I received my correct diagnosis. I began writing my memoir, “Misidagnosed: My Thirty-Year Struggle with a Debilitating Disorder I Never Had.” A friend suggested I begin blogging. I had no idea what a blog was, but Google steered me in the right direction. I soon became a contributor to The Mighty, was asked to give an interview to the UK Daily Mail, and the next thing I knew the “Today” show was knocking on my door asking me to share my story with the world. It was whirlwind; I was excited, and at the same time, petrified. I’m not a public person. And I’m not one to share my innermost thoughts with just anyone. In fact, I wasn’t sure if I could do it. Could I share my life’s struggles with millions of viewers? Through prayer and reflection, I quickly realized I had to. I knew if I shared my story, it would help at least one person. Surprisingly, it has helped many, including Sue Pascale.

Sue’s sister-in-law watched my “Today” show interview and thought my medical journey seemed very similar to Sue’s. Sue, who was diagnosed with cerebral palsy (CP) as a young child, was in her 50’s. She needed 24-hour care and was looking at nursing homes because she was having trouble eating and breathing. Her husband, Tom, watched the segment, and thought my gait was similar to the teenage Sue he remembered. Tom and Sue reached out to her doctor and she began a trial of L-dopa. Within an hour of taking the “miracle” drug, Sue began noticing that the tremor in her face had ceased. Within two hours she was able to change the channel with the remote, which she hadn’t been able to do in a very long time. In time, she was even able to walk.

My husband, Steve, and I were able to meet Sue and her husband, Tom, this weekend. Meeting Sue was life-changing for me. I knew I was helping change lives. I was giving others hope. Sue’s husband Tom asked me, “How does it feel to know that you saved someone’s life?” At that moment, I knew I had to keep sharing my story. Just that morning, I had told Steve that I wasn’t sure whether I should keep speaking, blogging, Facebooking, etc. I didn’t understand the point of it at the time. How was it really helping others? Was it worth taking time away from my kids and my husband?

Every day I prayed, asking for a sign about whether to continue sharing my story. I share this with all of you because I want you to know that at times, I too, second guess my purpose in life. I wonder, am I doing the right thing? Am I making a difference in the world? And of course, for each and every one of us who are trying, the answer is “yes.”