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

We have previously posted stories and insight from our large network of patients. And we often hear from our patients how much they appreciate learning from those with the lived experience of EDS and HSD. In this post, we share the insight from one patient who created a journal to help build a practice of organization to address the unpredictable nature of disease. We hope you enjoy. And as always, please share your comments in the section below.

Every morning, I sit down with a cup of coffee, say a prayer, and organize my thoughts for the day ahead. This small ritual keeps me grounded as I navigate 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 reading this, you might be searching for ways to bring more order and purpose into your life despite the challenges you face. Let’s explore why it matters and how we can do it together.

For over 30 years, I’ve been managing multiple health issues that often disrupt my daily life. Even with the best intentions, these challenges always seem to find a way to derail my plans. 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 for me, not just because of the new diagnoses but because it forced me to rethink how I approach my daily routines.

Living with chronic illnesses means dealing with unpredictability. Some days, you wake up feeling ready to take on the world; other days, even the smallest task feels insurmountable. That’s why staying organized is so important. It’s not about creating a rigid schedule that adds pressure to your life—it’s about giving yourself tools to navigate the ups and downs. Organization helps you prioritize what truly matters and ensures you have a clear plan for the days when brain fog or fatigue set in.

But it’s not just about staying organized; it’s also about staying intentional. When you’re dealing with chronic illnesses, it can be easy to fall into survival mode, simply getting through the day without really living it. Intentionality helps us focus on the aspects of life that bring us joy, meaning, and growth. It reminds us to nurture our spiritual health, care for our mental and physical well-being, and find moments of lightness and laughter, even on the hard days.

As I reflected on my own routines during that week in Florida, I realized that the tools I was using—journals, calendars, and checklists—weren’t fully meeting my needs. They helped me stay on top of tasks, but they didn’t encourage me to be intentional about my well-being. That’s when I decided to create a journal specifically designed for people like me, who need to balance the demands of life with the challenges of chronic illness.

This journal focuses on four key areas: spiritual health, mental health, physical health, and moments of humor to keep things light-hearted. Each day’s prompts are designed to help you reflect, prioritize, and stay purposeful. By breaking your day into manageable and meaningful pieces, the journal becomes a tool not just for organization but for intentional living.

Staying organized and intentional has transformed how I approach life with chronic illnesses. It’s not about perfection or ticking off every box on a to-do list—it’s about creating space for what truly matters and giving yourself grace on the tough days. Through this journal, I hope to share that approach with others, helping you find clarity, balance, and joy amidst the chaos.

Now that you know why I created this journal, let me walk you through how to use it effectively. At the beginning of the journal, you’ll find empty calendar pages to plan your extended schedule in one place. You can use this space for things like events, workouts, or kids' activities. Each day, you’ll fill in the daily portion of your journal, which spans from 6 a.m. to 9 p.m. This allows you to outline your day—and you can even go back later to fill in the gaps as they unfold! On the right-hand page, you’ll encounter rotating themes that focus on mental health, spiritual health, physical health, and something funny. These thoughtful daily questions are designed to keep your answers honest and intentional, helping you maintain a fresh perspective while navigating your day.

You can find this journal on my website at www.eformsmobile.com/shop. Use the code MAYO for 10% off. Most orders ship out the same day.

Here’s to embracing the challenges of chronic illness with grace and determination. Let’s stay organized, intentional, and hopeful together.

Author: Rhiannon Thompson