Kelly connects with Amy Kurtz, a patient advocate, health coach, and author of the trailblazing book “Kicking Sick: Your Go-To Guide for Thriving with Chronic Health Conditions.” Amy has been featured on Good Morning America, Oprah Daily, The Boston Globe, Fox and New York Magazine. She has a new book, “But You Look Fine: Trapped in the Hell Between Sick and Well and How to Break Free.” 

Chronic pain started for you as a kid and you note that it wasn’t just hard for you, but others had a hard time dealing with a person in pain. 

“I was totally carefree, a normal kid. I was very vivacious, full of life. I had no worries. And then all of a sudden, when I was fourteen, I started to develop really debilitating back pain. I had muscular pain. I had nerve sensitivity in my back. I grew up in the suburbs of Philly. I went to a lot of doctors, but nobody ever mentioned Lyme disease, and nobody ever could figure out what was wrong. And the answer was just to put me on anti-inflammatories to ease the pain. But it’s insane now looking back, knowing that outside of Philly is in the Lyme belt. I was outside barefoot running around all the time. And nobody ever mentioned Lyme. And then that became the first time that I really had to pivot where I felt okay, now I have to adapt to this pain. And being a 14-year-old girl is hard enough. It’s so treacherous in so many ways. And then being a kid in pain and trying to fit in is a whole other thing that you have to navigate aside from the pain itself. So that was the first time that I felt like I really was aware that other people were uncomfortable with me being in pain.” 

So, the crux of this book is about secondary trauma – the trauma that you experience dealing with chronic illness. 

“I found myself in this fresh hell that I couldn’t explain. And I didn’t even know that I was experiencing it because nobody ever told me it was a thing. I’m really the type of person that thought I was doing all the things to get better. But we have this societal expectation or dichotomy that you’re either sick or you’re well and that there’s nothing in between. And it’s literally insane to say to somebody who’s been acutely ill or experienced acute, detrimental, life-changing loss that there’s no in between and that there’s no processing of the things that happen to us. Or if you’re a patient that you shouldn’t have feelings about what’s happening to you. And I found myself not even understanding what was happening. It wasn’t until my husband said something to me where he said, ‘Hey, I feel that there’s a second phase that you’re going through right now,’ and I’m looking at him like, ‘What?’” 

And this is like an invisible illness. 

“The truth is that you’re told to just get back up on the horse after tough things happen. But, there’s no more horse. The horse is gone. Everything, as you know it, has changed, no matter what the difficult experience or the loss. Everything about you has changed. It’s impossible to expect people to just move on as if nothing’s happened.” 

Photo Credit: Peter Hurley