The Power of Organization and Intentional Living: Thriving with Chronic Illnesses

Author: Rhiannon Thompson, Patient of the EDS Program

I’ve shared stories and insights from my experiences and connected with many others in the EDS community. One common thing I often hear from fellow patients is how much they value learning from others who are living with EDS and HSD. In this post, I want to share my own experience of creating a journal to help manage the unpredictable nature of the illness. I truly hope you find it helpful, and as always, I welcome your thoughts and comments below.

Every morning, I start my day with a cup of coffee, a prayer, and some time to organize my thoughts. This small ritual keeps me grounded as I juggle the many roles I play. But for those of us living with chronic illnesses, staying organized isn’t just helpful—it’s essential. If you’re living with a chronic illness, you might be searching for ways to bring more order and meaning into your life despite the challenges. Let’s dive into why it matters—and how we can make it work together.

For over 30 years, I’ve been managing multiple health conditions that disrupt my daily life. Even with the best intentions, these challenges always seem to throw me off course. In September 2024, I visited the Ehlers-Danlos Mayo Clinic in Florida, where I was diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS), Fibromyalgia, Dysautonomia, and Mast Cell Activation Syndrome (MCAS). That week of appointments was a turning point—not just because of the new diagnoses, but because it forced me to rethink how I approach my daily routine.

Living with chronic illness means living with unpredictability. Some days, I wake up ready to take on the world; other days, even the simplest task feels overwhelming. That’s why staying organized is so important. It’s not about sticking to a rigid schedule that adds pressure—it’s about giving yourself tools to navigate the ups and downs. Organization helps prioritize what truly matters and gives you a plan for those days when brain fog or fatigue take over.

But organization alone isn’t enough. It’s also about intentionality. Chronic illness often pushes us into survival mode, where we just get through the day without really living it. Being intentional helps us focus on the aspects of life that bring us joy, meaning, and growth. It reminds us to nurture our spiritual health, take care of our mental and physical well-being, and find moments of humor and lightness—even on tough days.

During my week in Florida, I realized that the tools I was using—journals, calendars, checklists—weren’t fully meeting my needs. They helped me stay on top of tasks but didn’t encourage me to focus on my overall well-being. That’s when I decided to create a journal specifically for people like me—those balancing the demands of life with chronic illness.

My journal focuses on four key areas: spiritual health, mental health, physical health, and humor to keep things light. Each day’s prompts are designed to help you reflect, prioritize, and stay purposeful. By breaking your day into smaller, manageable pieces, the journal becomes a tool for both organization and intentional living.

Staying organized and intentional has transformed the way I approach life with chronic illness. It’s not about perfection or checking off every box on a to-do list—it’s about making space for what truly matters and allowing yourself grace on the hard days. What helps you find balance, clarity, and joy amidst the challenges?