Zebra Seeking Spoons

Sometimes I worry that people only see the part of me that talks about chronic illness.

My social media is filled with poems about pain. My blog is full of stories about living in a body that doesn’t cooperate. I advocate for people with chronic illnesses. I raise awareness for Ehlers-Danlos syndrome. I speak openly about grief, exhaustion, and hope.

And sometimes I wonder if people think that’s all there is to me.

The truth is…it’s not.

I don’t wake up every morning wanting my life to revolve around illness. If I could choose, I would much rather spend my days writing about adventures, traveling, celebrating milestones, or sharing stories about all the ordinary moments that illness has stolen from me.

But this is the life I have.

And somewhere along the way, I realized I had a choice.

I could let my suffering exist for no reason at all.

Or I could let it become a light for someone else.

When I first got sick, I felt completely untethered.

I had lost so much more than my health. I had lost dreams I had spent years building. I had lost independence. I had lost confidence in my own body. I had lost the future I thought I was walking toward.

Most painfully, I lost my sense of purpose.

I remember wondering, If I can’t do the things I thought I was meant to do…then who am I now?

That question haunted me.

Writing slowly became my answer.

At first, it was simply survival.

Then it became healing.

Eventually, it became purpose.

Every time I share something vulnerable, I picture the person I used to be—the one desperately searching the internet at two in the morning, hoping to find someone who understood what living with constant pain felt like.

I write for that version of me.

And I write for the people who are living that reality today.

Because if one person reads my words and feels less alone…

If one newly diagnosed zebra realizes there is still hope…

If one caregiver better understands what their loved one is carrying…

If one person decides to keep going because they finally feel seen…

Then this life, however different from the one I planned, has meaning.

That doesn’t mean my illness defines me.

It means my compassion does.

Please don’t mistake what I write about for all that I am.

You are seeing one room in my house, not the whole home.

You aren’t seeing the person who laughs until she cries.

The one who loves deeply.

The one who dreams about traveling.

The one who finds joy in sunsets, books, babies, animals, and quiet conversations.

The one who still has hopes that reach far beyond doctor’s offices and medical charts.

Those parts of me still exist.

They always will.

My illnesses are chapters in my story, but they are not the title.

I refuse to let them be.

I talk about chronic illness because silence is lonely.

I write because I remember what it felt like to believe no one could possibly understand.

I advocate because too many people are still dismissed, misunderstood, or forced to fight battles they should never have to fight alone.

This community gave me something I thought I had lost forever.

It gave me purpose.

So if my words make someone else feel seen…

If they help carry someone through one impossible day…

If they remind someone that their life still has value, even if it looks nothing like they imagined…

Then every difficult sentence has been worth writing.

I am not my diagnosis.

I am not my pain.

I am not my limitations.

I am simply someone who chose to turn one of the hardest parts of her life into a hand reaching back for the next person still trying to find their way.

And if you’re reading this while feeling lost, I hope you know this:

You are so much more than your illness.

And so am I.