I Am a Rare-Disease Survivor

This is personal.

It is scary to go public and tell people that I am a rare-disease survivor.

I had hereditary spherocytosis since I was a child. I no longer have a spleen and a gall bladder. My spine is weak because of degenerative disc disease. My brain is prone to bleed because of cavernoma. My immune system is always at risk. I get sick easily.

There are days when the fear is loud.

“You will always be the sick one.”

“Your body will fail you again.”

“You cannot build anything that lasts.”

I have heard these voices in quiet rooms, in the middle of work.

If your body has ever made you feel small, I know that feeling.

I know what it is like to look fine outside and feel fragile inside.

I know what it is like to wonder if your weakness is too much for God.

It is not.

These sicknesses are real. The pain is real. The weight of them is real. And I will not pretend they are small.

But they are not my Savior. They do not get the final word over me. They do not name me.

Christ does.

He holds my story, and even these hard parts He uses for His purposes.

That is the only sentence that holds me together on the hard days.

Not my discipline. Not my freelance income. Not my testimony. Christ Himself.

I am a survivor. I have been freelancing since 2015. I teach people how to start working from home for free. I walk with them through the steps to grow into a Social Media Manager.

I do this from a body that is not always cooperating.

And that is the point.

There is still life even if you are sick.

There is joy even in your pain.

There are ways to earn and serve outside the corporate world.

God never makes a mistake.

Our pain has a purpose.

Our suffering is meant to show who God is, not how strong we are.

When everyone has left you.

When everything has fallen apart.

God is the only rescue you need.

The beauty of this vast universe shows that human beings are nothing but dust. A helpless creature apart from God.

That is not meant to crush us. It is meant to correct the posture of our hearts.

We are small. God is not.

We are weak. Christ is enough.

I cannot promise you healing in this life. I cannot promise you an easy body or a quiet diagnosis.

But I can point you to the One who was broken so we could be held. The One who knows what a tired body feels like. The One who does not turn away from sick people. He welcomes them.

That is the hope I want to carry.

Not the hope that says, “Look within yourself.” Not the hope that says, “Hustle harder.”

The hope that comes from God alone.

If you are carrying sickness today, do not let pain write your whole name. Bring your weak body to Christ. Receive the grace for today. Then take the next small step.

Teach what you can. Serve who you can. Rest when you must.

Our lives are small offerings. He receives them.

Let us keep moving on.

For the glory of God.

- Lala