Finding Yourself Again: A Call to Those Who Feel Lost in Chronic Illness

If you’re reading this and feeling like you’ve lost yourself, like the person staring back at you in the mirror is a stranger, this is for you.

I want to tell you something that took me years to understand: you are not alone, and you are not broken.

Living with chronic illness changes everything—your body, your identity, your relationships, and your dreams. It’s like trying to hold onto water as it slips through your fingers. One moment, you’re living a full, vibrant life. The next, you’re struggling to recognize yourself in the fragments of what remains.

My Journey: From Thriving to Surviving

In 2010, my life was fast-paced and full of purpose. I worked 16-hour days in hospitality, swimming daily, thriving in a career that felt more like a calling. My work was my joy—organizing events, building connections, and spending more time with my work family than with anyone else. I loved every second of it.

But then, things started to shift.

• I woke up one morning feeling like I was walking on a pebble beach, my feet stiff and aching.

• My energy drained faster than it should have, leaving me burnt out no matter how much I rested.

• I began to experience strange symptoms: passing out unexpectedly, unexplained injuries, and even stroke-like episodes.

I sought answers. I went to doctors, specialists, and hospitals, desperate to understand what was happening to my body. Each time, I was met with the same response: “You’re overworked,” “It’s stress,” or worse, “It’s all in your head.”

The breaking point came during an appointment with a specialist in London. After years of being dismissed, I was told outright: “There’s nothing wrong with you. Your lab work is fine. This is all in your head.”

Those words shattered me. I walked out of that appointment and made a decision: I was done. Done searching for answers, done explaining my symptoms, and done hoping for validation. If it was all in my head, I told myself, then I’d figure it out on my own.

But instead of finding answers, I buried the questions. I masked my pain—not just from others, but from myself. I powered through, pretending everything was fine, until I no longer knew who I was.

The Turning Point: A New Decade, A New Perspective

By 2020, everything was falling apart. I couldn’t keep up at work. The 16-hour days that once fueled me had become impossible. Pain and exhaustion consumed me, leaving little room for anything else.

Then the world changed. On March 23rd, 2020—my 40th birthday—the UK went into lockdown. The pandemic forced us all to slow down, but for me, it did something more: it forced me to confront myself.

“You can’t hide it anymore,” my partner, Sam, told me.

He was right. For the first time in a decade, I stopped pretending and allowed myself to feel everything I had been avoiding:

• Sadness for the life I had lost.

• Anger at the years I had spent being dismissed and invalidated.

• Fear of what the future might hold.

But amidst the grief, something else began to emerge: determination. I wasn’t the same person I had been before, but I wasn’t broken either.

Rebuilding Myself: A Phoenix Moment

The person I was before chronic illness is gone, and I’ve made peace with that. In her place is someone stronger, more resilient, and deeply committed to making a difference.

This wasn’t a quick or easy transformation—it was a process, built on small, deliberate steps:

1. Educating Myself

   After years of being dismissed, I decided to take matters into my own hands. I armed myself with knowledge, diving into research about my symptoms and conditions. Eventually, I was diagnosed with Ehlers-Danlos Syndrome (EDS) and Chiari Malformation. Finally, I had answers.

2. Letting Go of Fear

   Fear had been my constant companion—fear of being seen, fear of being judged, fear of what I might find if I stopped masking. Letting go of that fear allowed me to rediscover myself. I stopped hiding and started living authentically.

3. Focusing on What I Have

   Chronic illness takes a lot, but it doesn’t take everything. I stopped fixating on what I had lost and started working with what I still had: my curiosity, my passion, and my drive to help others.

4. Finding Spirituality

   Spirituality became my anchor, giving me perspective and purpose. It helped me connect with myself and the world in ways I hadn’t before, turning my pain into growth.

A Message for You

If you’re feeling lost right now, I want you to know this: it’s okay. It’s okay to grieve, to be angry, to feel unrecognizable. But it’s also okay to take that first small step toward rediscovering yourself.

Here’s what I’ve learned:

• You Are Not Alone. No matter how isolating chronic illness feels, there are others who understand what you’re going through.

• You Are Not Broken. The person you are today is just as valuable and worthy as the person you were before.

• You Can Rise Again. Even in the ashes of what once was, there is always the potential for growth.

The person in the mirror may feel like a stranger now, but they are still you. And they are capable of so much more than you realize.

I see you. I hear you. And I want you to know: you are not alone on this journey.

What Comes Next?

For me, the journey continues. I’m still learning, growing, and finding ways to use my experiences to help others. Whether it’s through advocacy, storytelling, or simply being there for someone who feels as lost as I once did, I am determined to make a difference.

And for you? Your journey is just beginning. Take it one step at a time, and remember: you are stronger than you think. Be Kind to yourself, My Chronically Ill friends.