We Need Whole-Person Care in Chronic Disease Management | Jessica Caron’s Story
Jessica Caron, MS
Patient Advocacy Advisor
Healthcare delivery is evolving, especially as patients’ demands for better care are being brought to the forefront. This is especially true in the management of chronic illness, which can be an incredibly challenging and confusing journey for many, particularly when patients don’t have the skills or support they needed to thrive.
Slowly but surely, pockets of healthcare are evolving to appreciate that chronic illnesses are most effectively managed when care is personalized and driven by patients who are involved, informed, and empowered. This has now long been the case for me, but for years it was not.
For IBD, the path to finding effective treatment is arduous
I was diagnosed with Crohn’s disease in 2008, following a confusing time when the rapid onset of symptoms left me anxious, isolated, and incredibly fatigued. While I was struggling to find answers about what was happening to my body, I watched as my friends joyfully celebrated our final year in college and prepared for graduation.
There were many days where I stayed home, eating mashed potatoes for almost every meal and stressing about the amount of blood I was passing. Meanwhile, my college friends were busily making plans to start their lives in “the real world.” I didn’t trust my body enough to make plans to leave the house, let alone embark on the next chapter in my life.
Helpless, alone, and in pain were the challenges that defined my life during this period. I didn’t know anyone else that could relate to what I was experiencing, and it would be years after my diagnosis before I even meet someone else with Crohn’s. After countless costly tests, scopes, scans, and visits to a handful of clinicians across two states, I finally got my diagnosis.
Receiving a diagnosis was progress, but it did not bring the immediate relief that I had hoped for. I was admittedly shell-shocked by the process and felt overwhelmed and frustrated by ineffective treatment plans, insurance battles, and concerns of a progressing disease. I began to fear … would I ever be able to accomplish what I hoped for in life?
Learning to be resilient is key to thriving
Ultimately, I decided to turn the early hardships with IBD into the motivation that drove me to achieve remission.
With a lot of thought and care, I worked to strengthen my voice to advocate for better health. My first step was to better educate myself about my disease, so I could more confidently communicate with my medical team during appointments. I also began tracking my diet and exercise to slowly make some improvements on my own at home, too. Finally, I began setting and achieving personalized goals for my treatment and care.
It wasn’t until my disease was under control that I was able to fully reflect on the long and painful experience — emotionally, physically, financially, and socially — that it took to attain well-being.
Today, I’m able to look back on more than a decade with Crohn’s disease and feel thankful for my marriage to my college sweetheart, my wonderful children, multiple advanced degrees, and a career that has allowed me to advocate for other patients who, like me, desperately need healthcare to rise to meet their whole person needs.
Because I developed resilience in the face of IBD, I was able to make these things happen and establish habits for managing lifelong illnesses with success. When I think about my difficult early experience with diagnosis and finding treatment, I know that it never should have taken me this long to feel confident that I can manage and direct my own care.
No one should have to suffer in pain, isolation, and confusion — sometimes with irreversible consequences — because they did not know how to advocate for the care that would fit their needs.
Advocating for whole-life care
I wish that my experience was unique, but unfortunately it can be a common process for people living with chronic conditions like IBD. While many advances in medications and treatments have been achieved in the years since my diagnosis, how we support an IBD patient’s whole-life experience is still lacking.
Our healthcare system still focuses primarily on treating physical symptoms, often neglecting the complex interactions of emotional health, nutrition, social support, and daily behaviors and thoughts for improving health outcomes in people living with chronic conditions.
Our healthcare system should strive to provide the following to all people with chronic illnesses:
- Patients deserve to feel that they have support while navigating life-altering diagnoses, like IBD.
- Personalized planning, with a focus on how the disease may impact every part of a person’s life, is paramount.
- Access to clinicians that support many different aspects of the disease management journey, especially specialized mental health support, should be the norm.
- All patients should see building confidence and habits to sharpen their disease-navigating abilities as an essential part of their healthcare.
Programs like Trellus Health’s Gaining Resilience Through Transitions (GRITT™), I believe, are a big step forward in the movement to help bridge this gap that has existed in healthcare for far too long.
As a Patient Advocacy Advisor for Trellus Health, I’m proud to hold an elevated patient voice in ways that didn’t exist back when I was first diagnosed with IBD. I don’t sit on a disparate committee, but rather act as an important part of a dedicated team to constantly evaluate program design and experience so it can be specifically tailored to suit IBD patient needs — pulling in a multitude of patient preferences and disease experiences to ensure that this viewpoint is held highest.
For both veterans in their disease management and those newly diagnosed, finding a sense of strength to keep pushing until your best personal outcomes are achieved can be a vital step to making the move towards a future that feels full and hopeful.
My personal journey in managing Crohn’s disease showed me just how life-altering it is to confront chronic illness, and how powerful it can be to develop a sense of resilience that drives you to keep moving forward.
About the Author
Jessica Caron, MS is a passionate healthcare professional and patient advocate in the Inflammatory Bowel Disease (IBD) community. As a nationally recognized speaker on patient advocacy, Jessica shares her experience as a patient living with Crohn’s disease, advocating for a co-facilitated approach to advancing medical care. She blogs and supports patients across the globe through her website, Chronically-Jess.com.
Jessica has a psychology degree from the University of Maine, a Master of Education in Human Relations from Plymouth State University, and recently earned her master’s in Health Care Delivery Science (MHCDS) from Dartmouth College. Jessica currently lives and works in New Hampshire with her husband and two young sons.