Learning to Let Go While Learning to Live - Izzy's Chronic Illness Story

Some years don’t ask politely. They take, they stretch, they force change before we’re ready. For Izzy, this year has been about grief, adaptation, self-advocacy, and redefining what care looks like when the system falls short. It’s a story many in the chronic illness community will recognize. One about listening to the body, honoring limits, and choosing self-preservation without guilt.

Keep reading to experience Izzy’s reflections in her own words and to learn what it means to keep going when the answers don’t come easily.

Grieving the Life You Imagined While Adapting to What Is

This year has been particularly tough, and I’ve had to let go of a lot of things that deeply matter to me. While grieving that reality, it always feels like a slap in the face at first, but I adapt. I’ve learned to find lower-energy ways to experience joy. It still sucks, I won’t sugarcoat it, but small adjustments can end up making a big difference.

Medical Gaslighting, Systemic Gaps, and Becoming Your Own Advocate

This year was full of abnormal tests, medical gaslighting, and systemic disappointment. When it became clear that specialists were waiting for a single “magical” doctor to put everything together, something that’s nearly impossible in a siloed system, I realized that I could do it myself. I didn’t go to medical school, but have one advantage no provider has: I live in my body. Seeing multiple specialties simultaneously allows me to weave diagnoses and body systems easily using valid, open-access research. That advocacy led to mixed results: some overwhelmed by the knowledge, others shut it down entirely, and most didn’t take time to review studies I shared. Advocacy in medicine is messy because each provider can react very differently, and sometimes unpredictably. While I still think it’s important, I keep in mind that you often have to tiptoe.

Choosing Solitude and Emotional Honesty During the Holidays

During the holidays, I value my alone time even more. Sometimes that looks like lying down in silence or turning music up loud to translate my emotions. I’m grateful for the ability to step away, drop the (sometimes unintentional) “everything is fine” mask, and actually feel what I need to feel.

Shifting From Diagnosis-Chasing to Symptom-Based Care

For most of my life, I’ve been chasing diagnoses. While that’s gotten me some answers, it also trapped me in a cycle of invalidation, “we don’t know = do nothing,” and constant frustration. This season, I’m finally shifting my focus toward my symptoms rather than a diagnosis I may never receive. While I know underlying systems, diagnosed or not, are contributing, there are surface-level needs I’ve never explored because I was taught that care only comes with ICD-10 codes. In reality, that’s deeply flawed.

Taking a Break as an Act of Self-Preservation

I hope to find comfort in taking a break from investigating my health and focusing on myself instead. Appointments are exhausting, emotionally draining, and often end in tears, so removing that stressor, even temporarily, feels like an act of self-preservation. I want to learn who I truly need to stay connected with and feel at peace with pausing the search for answers.

Follow Izzy on Instagram to learn more about her journey.