When I was diagnosed with moderate to severe Crohn’s disease 7 years ago, I wanted a simple and straightforward “cure all” treatment. To my dismay, I learned that relying on one silver bullet drug, would not suffice. Controlling this disease was like trying to tame a wild animal and would require balancing many factors. I became attuned to how psychological stress and poor diet negatively affected my symptoms. With a careful combination of transient targeted steroids, immunomodulatory drugs, vigorous exercise, and lifestyle changes, I regained my ability to thrive. I returned to my former state of athleticism, regularly tackling the intense and unforgiving northern California waves with my surfboard.
I soon entered the University of California, Santa Cruz’s neuroscience and psychology programs. While I was intensely focused on my academics and extracurriculars, the foundational nature of the human brain became seemingly more important. Comprised of approximately eighty billion neurons or brain cells, the vast intricacy of this three pound organ is extraordinary: The relationships or “connections” between these neurons –– called synapses –– outnumber the stars in our home galaxy. These small spaces are in actuality busy microcosms of information transfer between neurons. Minute chemical messengers called neurotransmitters serve as the communicational media. It is widely believed that the way in which brain cells are connected and their chemistry determines our psychological state.
I took note: under times of intense pressure or stress my physical symptoms manifested. Was this just a mere coincidence? Or was there really something going on? With a neuroscientific lens, I investigated.
I found that the connection between the brain and body and its interactions in disease are well-recognized by the scientific community.1 Modern day stress is seemingly connected to our most primal of reactions – activating a “fight or flight” response – that would be more useful to us in prehistoric times in our interactions with predation. A stress hormone called Cortisol serves to direct our body’s resources (in the form of glucose) away from non-vital functions like digestion and immune activity. For this reason, scientists believe that prolonged stress plays a pivotal part in a myriad of autoimmune conditions.
The extent to which psychological states influence the disease progression of IBD is still somewhat unclear. Numerous studies and review articles, however, suggest that these psychological states play a role in both direct disease progression and how patients deal and cope with their disease. 2, 3, 4, 5
Reducing stress is just one of many changes that help me live with Crohn’s Disease. Further, just as important is staying informed and imaginative. This blog and the entire ImproveCareNow community represent a beautiful medium for these concepts to flourish. Thank you for your part in this community.
When I’m not leading improvement activities in the ImproveCareNow network, I’m busy raising a family. As a parent of young kids, I do a lot of bedtime reading. Recently, I was reading The Little Prince (Le Petit Prince) by Antione de St. Exupery to Finn, who is 7. After a few pages, Finn just wanted to go back to his other book (I will have to try again in a few years!) but it made me want to reread it after a long time.
This quote appears not far into the book:
“Grown-ups love figures…When you tell them you’ve made a friend they never ask you any questions about essential matters. They never say to you “What does his voice sound like? What game does he love best? Does he collect butterflies? Instead they demand “How old is he? How much does he weigh? How much money does his father make? Only from these figures do they think they have learned anything about him.”
As ImproveCareNow builds an awareness and engagement campaign aimed at bringing many, many more patient and parent partners into our work, we have such wonderful models for storytelling about the “essential matters”—the story of the whole person, not just the figures like lab results, medications, and BMI. Our Patient Advisory Council (PAC) members so often share their stories as people, not just patients. They articulate their journey with IBD in ways that are wise beyond their years and make us pause and think about how we can try to be wiser and learn from them. Our Parent Working Group members have challenged us to see their children’s whole lives and faces when we look at the data we use to drive improvements. And our colleagues at Empowered by Kids are using their amazing commitment and individual talents to reach other families who need to expand their own “village.”
I am off to Chicago tomorrow for the ImproveCareNow Fall Learning Session. Learning Sessions are a time to celebrate the achievements of the past six months, but also to ponder how best to leverage the strengths of our community to do even more together. The essential questions for us now are: How will this Learning Health System reach and engage and partner with many more parents and patients? How can we pair the right people with the right action – bringing new energy and perspectives to how we run the whole network, and how things are done at each individual care center?
We know we will be even better at achieving our aims (the most important of which is getting more and more kids into remission!) with more people working with us, sharing their experience and talents and perspective. So as we plot out next steps for ImproveCareNow, I think we need to stay focused not only on “figures”, but also on “essential matters”. Our many parent, patient and clinician partners are already teaching us the importance and the impact of a story. I know I can’t wait to hear from—and really learn about—more and more of them.
The better we know each other, the easier it will be to create the future of ImproveCareNow together and to find joy in learning and leading together.
See you in Chicago!