5 Unexpected Ways Chronic Illness Built My Resilience

This past May marked four years since I was diagnosed with Idiopathic Intracranial Hypertension (IIH)—a rare neurological disorder that mimics the symptoms of a brain tumor. This milestone had me reflecting on my journey: not just how I got here, but the resilience I’ve had to build along the way.

Living with a rare chronic illness like IIH means constantly adjusting to an unpredictable reality. It’s a condition that demands patience, adaptability, and self-compassion—all of which are critical to building resilience.

As September is Idiopathic Intracranial Hypertension Awareness Month, I wanted to share some of the biggest lessons I’ve learned about resilience while living with this condition. Whether you have IIH or another chronic illness, I hope these insights remind you that you are stronger than you realize.

The Reality of Diagnosis and Adaptation

My life changed in an instant when I was diagnosed with Idiopathic Intracranial Hypertension (also known by its outdated name, Pseudotumor Cerebri), a condition where excess cerebrospinal fluid builds up, causing pressure in the skull. The symptoms—crushing headaches, dizziness, vision problems—were impossible to ignore.

At the time, I was working in the high-stress financial industry, juggling customer service and account management for retirement plans. I thrived on productivity and efficiency. But my body had other plans. My symptoms made it clear: I couldn’t keep up the same pace. I had to adapt—and quickly.

In August 2018, I made the difficult decision to quit my full-time job with no backup plan. It was terrifying, but I knew I couldn’t continue pushing myself to the brink of collapse. With some financial cushion and the determination to prioritize my health, I shifted gears. I found part-time remote work that allowed for flexibility, enrolled in life coach training, and started the long process of learning how to live with my body instead of fighting against it.

This journey hasn’t been easy, but through it, I’ve learned profound lessons about resilience—lessons that extend far beyond IIH and into every aspect of life.

5 Lessons in Resilience From Living With

Idiopathic Intracranial Hypertension

1. Resilience Starts With Self-Compassion

Before my diagnosis, I measured my worth by how much I accomplished. Rest was something I had to “earn.” IIH shattered that belief.

Building resilience meant learning self-compassion—understanding that my body wasn’t failing me, it was communicating its needs. Instead of punishing myself for needing rest, I began offering myself the same kindness I’d show a friend in my situation.

Resilience isn’t about pushing through at all costs—it’s about recognizing when to pause and recharge.

2. Patience Is a Survival Skill

Waiting has become a constant in my life—waiting for doctor’s appointments, waiting for medications to maybe help, waiting for flares to pass. But the hardest waiting is the kind without a clear timeline:

• Waiting for others to understand my condition.
• Waiting for my body to cooperate on important days.
• Waiting to see if a new treatment will work.

Resilience doesn’t mean accepting suffering—it means finding ways to cope while you wait. It means developing patience, not as passive endurance, but as an active strategy for navigating uncertainty.

4. Adaptability Is the Key to Thriving

“The only constant in life is change,” and chronic illness makes that truth unavoidable. My symptoms vary day to day, meaning I can’t plan my life the way I used to. Instead of rigid schedules, I now use flexible frameworks that allow me to adjust as needed.

Adaptability has helped me move from frustration to empowerment—I may not control my condition, but I can control how I respond to it.

5. Rest Is Not a Reward—It’s a Necessity

For years, I saw rest as something to be earned. IIH taught me that rest is foundational, not optional. Without it, everything else falls apart.

When I prioritize rest, my symptoms are more manageable, my energy lasts longer, and I’m better equipped to handle life’s challenges. Resilience doesn’t mean pushing through exhaustion—it means knowing when to step back so you can keep going.

Final Thoughts

Resilience isn’t about being invincible. It’s about adapting, setting boundaries, and showing yourself the grace to keep going—even on the hard days. Living with Idiopathic Intracranial Hypertension has forced me to develop resilience in ways I never expected, and while I wouldn’t have chosen this path, I’m proud of the strength I’ve built along the way.

If you’re looking for an easy way to build resilience and manage your energy more effectively, my Energy Management Toolkit can help. It’s packed with practical tools to help you track your energy, set sustainable routines, and create a system that works with your body—not against it.

Sign up below to grab your copy and start managing your energy in a way that supports resilience.