October 2019. Downtown Philadelphia.
A healthcare conference is being held inside of an upscale hotel for patients with a rare genetic lung disease.
That conference became the impetus for this book on the numerous emotional obstacles blocking collective fitness goals related to the obesity crisis in The United States.
How could a two-day meeting on a thoroughly unrelated topic lead to a book on psychological solutions for systemic American struggles with fitness and obesity? The answer begins with why we’re in Philly in the first place.
My attendance was on behalf of my employer – one of the leading manufacturers of treatment for this genetic lung disorder. Also in attendance: Disease-state-expert researchers, physicians, and nurses.
All these health-care professionals were giving speeches and seminars throughout both days. There were patients from all over this country who not only learned from these experts, but also bonded with one another, united against the disease.
Amidst the formality of the Philadelphia conference, the true inspiration for this book occurred from conversations during breaks in hallways and at lunch tables.
I was simply curious. I was brand new to working within this disease state. So, I took the opportunity to speak directly with several patients during the scheduled breaks built into the conference schedule. I asked them casually how many of their family members had been tested for this rare disease? Because the test itself is extremely easy, reasonably rapid, and free of charge. It’s a simple cheek swab at your local doctor’s office.
My thoughts were:
“This disease is genetic. It can become a very serious health threat if misdiagnosed. So surely, patients’ families had all been tested, right?”
To my astonishment and alarm, most of the patients I spoke with said their own siblings and grown children not only had not been tested but didn’t want to get tested.
Further than curious, I was becoming a bit distressed. This disease is not an insignificant matter at all. Why on earth would anyone not want to do a free and simple test when they know a close family member has the genes that can lead to this disease?
Perhaps you can presume why.
Realize the source: Because of the emotion: fear.
Not just fear of finding out whether they had inherited the genes for the disease (which is extremely unlikely, hence the designation of being a rare disease). But a fear that they may be required to alter their lifestyle: quit smoking, lose weight, adjust their diet, become less sedentary.
This is the same fear which makes some of us avoid our scale at home or postpone going to the doctor’s office altogether. And make no mistake, as simple as this genetic test is, you still must schedule it at the doctor’s office, which leads to trepidation as well.
Back to the conference. Here’s what led to this book. At lunch, one sweet, elderly patient uttered a simple yet profoundly perfect response to my growing incredulousness. She said:
“Honey, people don’t want to change. They just want to put their feet up when they get home from work and watch their TV shows.”
She was 100% spot on. But for me, my despondency (at the lack of people getting a free and easy cheek swab test) was intensified because of the incredible number of resources assembled at this conference, for these patients with this disease.
The depth and diversity of information at this event was immense:
• World-renowned genetic researchers.
• Tenured, hospital nurses who had been working decades in this disease state.
• A long-standing, highly respected non-profit organization dedicated solely to these patients nationwide.
• Multiple pharmaceutical companies sponsoring the occasion (including my employer) at booths stuffed with data on our products and empathy from highly trained and highly educated personnel.
All these entities were committed to giving advice and care. They were also scientifically arming patients with knowledge. Not to be forgotten, there was an emotional support network attending this event: other patients themselves. It was a sensational network of people.
And yet, fear of getting out of a comfort zone rendered this conference – bearing all the hallmarks of a supportive networking platform - under-attended by people who could benefit from all these numerous resources. It’s not that the efforts of all the organizers were wasted, but so many more people could have been assisted.
The conference was only 2 days. With a whirlwind of information and people it went by rapidly. It was time to drive home. As I strolled out of the hotel and across the parking lot and climbed into my car, those conversations with the patients regarding their families weighed on my mind more than the subject matter itself.
And on this ensuing drive home to Washington, DC, the thoughts kept growing as to how the same scenario seen at this conference unfolds throughout our nation. Meaning: staggering resources met with thunderous apathy. It happens not just with rare genetic diseases but with so many people across the health and fitness spectrum.
I kept my phone and my numerous music apps off. Just my thoughts and the highway. I started reflecting on my time as a personal trainer and a Pilates instructor. I thought about my own struggles to get into “elite” conditioning. I thought about how I’ve been trying (and failing) to help one of my dear friends to lose 100+ pounds.
Through the tolls and tunnels of interstate 95, over the bridges and bypasses, I recalled countless conversations I’ve had with health-care professionals through the years. Their struggles, their despair to beg patients to lose weight and not be dependent on medications always stood out to me in their uniformity of despair.
Two decades of my employment within the field-based healthcare industry became an engine of rumination.