Chiari Malformation Awarness Month

September is Chiari Malformation Awareness Month.

For me, this month means more than sharing facts or wearing a color. It is a reminder of a decade of symptoms, unanswered questions, countless appointments, and learning how to live in a body that often felt like it was working against me.

It is also a reminder of how much I wish people understood about Chiari Malformation.

So, this month, I want to share a few things I wish everyone knew.

1. You can’t always see it.

One of the hardest parts of living with an invisible illness is that you can look completely fine while struggling tremendously on the inside.

I learned this firsthand.

There were days when I showed up to school, work, church, and everyday life while carrying headaches, dizziness, fatigue, brain fog, and pain that no one could see.

I smiled. I participated. I kept going.

And sometimes, people assumed that because I looked okay, I must have been okay.

But looking healthy and feeling healthy are two very different things.

2. Chiari is more than “just a headache.”

Chiari Malformation is a structural condition involving the cerebellar tonsils at the base of the brain and their position in relation to the opening at the base of the skull.

For some people, Chiari can cause symptoms such as headaches, neck pain, dizziness, balance problems, fatigue, numbness or tingling, vision problems, difficulty concentrating, and many other neurological symptoms.

But Chiari can look different from person to person.

That is one reason diagnosis can be so difficult.

There isn't always a simple checklist that applies to everyone.

3. Getting a diagnosis can take time.

My symptoms started when I was 14.

For years, I knew something wasn't right, but I didn't have an answer.

I spent years trying to understand what was happening to me and wondering why I didn't feel like myself.

I was just a few months away from turning 24 when I was finally diagnosed with Chiari Malformation.

Almost ten years.

Ten years of symptoms.

Ten years of questions.

Ten years of wondering if there was an explanation.

That experience taught me something I will never forget:

Sometimes the person sitting in front of you knows something is wrong long before anyone can tell them why.

4. Being believed matters.

If someone tells you they are hurting, believe them.

If they say they are exhausted, believe them.

If they tell you they don't feel like themselves, believe them.

You don't have to understand someone's illness to believe their experience.

Instead of saying, “But you don't look sick,” try saying:

“I believe you.”

Instead of, “Have you tried ___?” try:

“How can I support you?”

Sometimes the most meaningful thing you can give someone living with chronic illness isn't advice.

It's validation.

5. Surgery doesn't necessarily mean the journey is over.

In December 2023, I underwent posterior fossa decompression surgery for my Chiari.

I remember thinking about everything that had led me to that moment.

The appointments.

The tests.

The uncertainty.

The years of pain.

And finally, surgery.

But surgery wasn't a magical finish line.

Recovery took time. My body had to heal. My symptoms changed. And I had to learn what life looked like after surgery.

Healing isn't always a straight line.

Sometimes progress looks like getting stronger.

Sometimes it looks like resting.

Sometimes it looks like adjusting expectations.

And sometimes it simply looks like making it through the day.

6. Chronic illness can affect more than your physical health.

Pain doesn't stay neatly contained in your body.

It can affect your friendships.

Your plans.

Your confidence.

Your mental and emotional well-being.

Your relationship with yourself.

There were things I lost because of chronic illness that people around me couldn't necessarily see.

And there were things I had to grieve that I didn't even realize I was grieving at the time.

But through all of it, I also learned that my illness does not get to define the entirety of my story.

My diagnosis is part of my story.

It isn't the whole story.

7. Faith doesn't mean you never struggle.

One of the biggest lessons I've learned through my Chiari journey is that faith doesn't make difficult things disappear.

Being a Christian doesn't mean I never felt frustrated, afraid, angry, exhausted, or discouraged.

It means I didn't have to walk through those feelings alone.

There were moments when I didn't understand what God was doing.

There were prayers I wished had been answered differently.

There were days when I wondered how much longer I could keep going.

And still, God was there.

Sometimes He didn't give me the answer I wanted.

Sometimes He gave me enough strength for one more day.

And sometimes, He reminded me that even in the waiting, He had not forgotten me.

Awareness means more than knowing the name.

I hope Chiari Malformation Awareness Month does more than teach people what Chiari is.

I hope it teaches us how to listen.

How to believe people when they tell us they're hurting.

How to stop judging someone's health based on how they look.

How to make space for people whose journeys don't look like ours.

And how to recognize that invisible illnesses are still illnesses.

If you know someone living with Chiari or another chronic illness, you don't have to have the perfect words.

You can simply say:

“I believe you.”

“I'm here.”

“You don't have to go through this alone.”

Those words can mean more than you realize.

And if you are the person living with the invisible illness, I hope you know this:

You are more than your diagnosis.

You are more than your symptoms.

You are more than the days when your body doesn't cooperate.

Your story is still being written.

Mine is too.

And after everything I've walked through, I can say this with confidence:

There is still so much life beyond the diagnosis.

My Story Is Almost Yours to Read

For almost a decade, Chiari was a story I was living.

Now, I've put that story into words.

My memoir, It’s All In Your Head: Enduring Pain, Embracing Christ: Living with Chiari Malformation, will be available on Amazon September 5th—tomorrow!

Writing this book has been one of the most vulnerable things I've ever done. I wrote about the symptoms, the uncertainty, the diagnosis, surgery, recovery, the emotional toll of chronic illness, and the ways my faith carried me through seasons when I didn't understand what God was doing.

I hope my story helps someone feel less alone.

I hope it helps someone recognize that their pain is real.

I hope it gives family and friends a glimpse into what life with an invisible illness can actually look like.

And most of all, I hope it reminds people that even when we don't understand the journey, God is still present in it.

If you've ever felt alone in your pain, I hope you'll remember: your story matters, your pain matters, and you are not alone.

This Chiari Malformation Awareness Month, let's choose awareness, compassion, and understanding—not just for a month, but every day.

And tomorrow, September 5th, I'll finally be sharing a piece of my story with you.

It’s All In Your Head will be available on Amazon.

Thank you for being part of this journey with me. 💜