Patient Advocacy — A Rocky Ride With Lessons to Learn

Last week I was watching my daughter at her horse lesson when suddenly the horse lost his footing and was crow hopping (think bucking without as much drama).

As I jumped up in panic, my daughter held on to the horse’s mane, then pushed off the horse’s body and landed squarely on her feet. After she landed, the horse stopped abruptly and they both stared at each other wondering what had just happened.

My daughter had a big smile on her face, proudly declaring it was the first time she had fallen off a horse and she impressed with herself for landing on her feet. While we had all expected a few tears, she brushed herself off and got right back on the horse. More confident than ever.

I’ve spent a lot of time reflecting on this 30-second event and the many lessons I can learn from how a nine-year-old handled a tough situation. No drama, no tears, just pure determination. She never got mad at the horse or blamed him. Rather she owned her role as a rider, and was more assertive with the horse when she re-mounted.

I entered the world of patient advocacy not by choice but by necessity (which I expect is the same for many of you). After two high-risk pregnancies, and having a baby in NICU, I had to pick up a patient advocacy hat and learn how to become my son’s voice.

Like my daughter, I’ve had a few rough rides along this journey. I feel like I’ve been bucked off a few times in the medical system. And like my daughter, I’ve dusted myself up and got back on the patient advocacy horse. Sure, a few times I’ve spent longer on the ground nursing my wounds than other times. And yes there are times when I was terrified of the horse and had no desire to ever get up.

But my love for my son, and sheer stubbornness, has pushed me to keep on riding the horse of patient advocacy. Guess what? Each time I fall off and get back up I’m a strong, more confident rider.

I’m better able to anticipate the bumpy parts of the ride, know when to hang on tight and when to jump off so as to not be bucked off. I have also made it my mission to share the lessons I’ve learned with others. After all, much of what I’ve experienced is common to other parents and patients, not just me.

I was inspired to write two patient advocacy books to share my rough rides, my smooth rides and lessons learned along the way with others.

I challenge you to take a moment to reflect on your patient advocacy journey. What are two rough rides you’ve had? How did you react to getting bucked off? What lessons did you learn? And how can you share these lessons with others so they can learn from you?