The Disease That Healed Me: GNE Myopathy

The dragonfly as a symbol of transformation.
An insect that leaves the underwater world behind and — just like me — trades its legs for wings.

🕒 Reading time: approx. 10 minutes

In June 2020, I received a diagnosis that turned my life upside down: GNE myopathy – a rare genetic mutation that slowly causes the muscles to weaken. What initially felt like a rupture, a collapse of everything I had known, became, in hindsight, the beginning of a deep inner journey.

In this article, I take you into the moment I received my diagnosis – into the silent panic of fearing I might lose the life that’s worth living – and to the point where I realized that this life, the one worth living, only truly began with the diagnosis. As paradoxical as it sounds:

This is the disease that healed me.

The Premonition — June 10, 2020

I’m sitting in a bright, clean, and nicely furnished consultation room at my new neurologist’s office — Dr. B, a former physician at Charité Berlin. I had a feeling that something wasn’t right, so I asked my partner Tillmann to come with me. It felt different from the countless other doctor’s appointments I’d had over the past four years.

Previously, when I mentioned my “floppy feet,” most doctors would just look at me blankly and shrug. I had been misdiagnosed with everything from a slipped disc to a vitamin B12 deficiency. I had grown used to no one knowing what was actually going on with me.

But Dr. B seemed different. He had seen me once before and had, in his slightly autistic but very clear way, explained what he suspected — and that a genetic test might provide answers.

And now here we were, ready to receive the results.

Tillmann sat to my left, and Dr. B across from us. The greeting was polite, though slightly distant — it was the beginning of the COVID-19 pandemic, and we were all already wearing masks and keeping our distance.

The atmosphere in the room felt friendly and relaxed. Dr. B opened a document on his computer — it must have been my digital patient file. After a few quick clicks, he said,

“Ah, yes! You’re here to receive your genetic results. I’ve got them right here.”

He began to read. After just a few seconds, I noticed his energy shift. His body and facial expression sank slightly.

Then he said:

“Yes, Ms. Krause — I was right in my assumption. You have a myopathy.”

He read aloud the percentage from the report. It sounded like a paternity test: “Yes, you are 99.9% the father.” Very similar, but different.

Tillmann, in true Tillmann fashion, launched into a discussion with Dr. B about the 0.01% chance that I might not carry this genetic mutation.

The Performance of Control

I tuned out. The world collapsed around me. Scenes like this — you only ever see them in films. Who would have thought something like this would one day be real for me?

When Dr. B and Tillmann had finished their discussion, Dr. B turned back to me with a few more explanations. While I faked a polite smile.

But for real, on the inside, I was screaming in panic, and I sat there and kept nodding politely. I even laughed occasionally at his "well-meaning" funny comments. If someone had observed us through a glass window, they would have thought we were having a pleasant little chat.

With every polite nod, my throat tightened more and more. The tears shot into my face — it felt like gasoline burning in my sinuses. And with each fake smile, each performative nod, I pushed those feelings further away from myself.

It felt like a bottle of sparkling water that had been shaken, cracked open slightly, and then screwed shut again — just to make sure nothing spilled. Tighter and tighter.

I didn’t realize in that moment that it was only a matter of time before the whole thing would explode. I kept nodding, smiling like a dashboard bobblehead, and sealed the bottle — seemingly for good.

Dr. B’s final words were:

“Well, luckily, you’re a psychologist — I’m sure you know that fear is a poor advisor.”

That pushed me over the edge.

I metaphorically threw the bottle out the window. I burst out laughing and said something funny — as we were leaving his office.

But that was it. I made a decision: to show no emotion. I didn’t let myself cry.

What strength means to me today is another story entirely. Back then, strength meant not showing my fear or grief. My mind told me to suck it up — to deal with it, because crying wouldn’t help. Later, I learned my mind couldn’t have been further from the truth.

And at the same time, of course, Dr. B was right: If you let fear alone make your decisions, you won’t live a fulfilled life.
You’ll always be longing for the what-if.

We Control to Survive — But Heal with Trust

Looking back now, what I’ve come to understand is this: without fear, there is no courage — and without courage, there is no trust. So fear must be allowed its place. It must be seen and fully felt.

That’s just as true as Dr. B’s words: that fear is a poor advisor.

Tillmann and I left the clinic in silence. In the elevator, I was surrounded by mirrors. I remember looking into my own eyes in the reflection, and suddenly it all rose back up again: the sparkling water.

The sparkling water that wanted to burst out. And I tightened the lid again. Looked away and focused all my energy on not losing my composure.

Tillmann started talking to me — I don’t remember what about. I was too busy performing. Performing like a strong young woman who had just received a life-changing diagnosis — and didn’t seem to mind at all.

How absurd.

Today, that makes no sense to me. But back then, I didn’t see another option. I didn’t even know what I was doing. Everything happened so automatically, so unconsciously — a pattern I had lived out for years.

But this time, it had to be different. This time, the challenge was so intense, I had to finally understand that I needed to stop performing — and learn to be.

When we finally stepped outside, the fresh air caught me. I felt the wind on my face — and I took a deep breath. To this day, I remember that moment clearly.

It marked the beginning of the most challenging journey of my life so far:
The journey to meet myself.

Between Diagnosis & Healing: Words to My Younger Self

Four years later, on April 17, 2024, I wrote this reflection, looking back on the fight I had been carrying for the past four years. The fight not to lose my strength, my beauty, or my sense of worth — because all of it felt tied to my ability to move (independence).

I captured my realizations in the form of a letter — addressed to my 29-year-old self, the woman who received the diagnosis of GNE myopathy on June 10, 2020.

Dearest Lisa,

I would love to give you something for the road ahead. No — more than that, I want to take something off your shoulders.

I want to take away your fear of being seen. You’ve just learned you have a degenerative muscle disease — you’ve received the diagnosis: GNE-myopathy.

Everything is okay. In a few years, you won’t see it as a burden anymore — but as the beginning of your healing.

The next four years will slow you down and make you more mindful. You’ll breathe, feel, smell, and see with greater awareness. Above all, you will begin to meet yourself more fully.

You will begin to reflect on movement — what it means to you, and how much you took it for granted. Through the loss of it, you’ll realize how deeply you loved it.

This wisdom will reveal itself to you through love. You will experience and feel it deep within — and you will never forget it. That knowing will infuse everything you do.

It will hold you. It will guide you.
You’ll lose an essential part of your body — but in return, you’ll get yourself back. This painful process is the price of your liberation.

It’s like coming home. And in a few years from now, you’ll even be grateful for it. You’ll learn to accept the painful loss and transform it into a powerful love that fills your entire being.

You’ll also come to understand: this won’t be the last painful process.
Many more will follow.

But you’ll know this: once pain is fully felt, a piece of you returns.
You’ll keep dying — to keep living.

It won’t get easier. It won’t be more comfortable. It won’t be less frightening. But each time you transform fear into courage, you’ll grow in trust.

You will understand what trust really means. And one day, you’ll feel how this cultivated trust settles in your being — solid and calm like a grandfatherly mountain.

The storm will always exist. But by then, you’ll no longer rely on the steadiness of your legs. You will have found your strength within.

Until then, Lisa — please don’t hide your tears.
Scream out your pain and fear over the loss of your mobility.
Allow these real emotions to live in you — they are your colors and your sounds..

Trust me: One day, they will become music — a song you'll dance to, and that dance will grow lighter with every step.

Allow yourself to be angry at all those who, knowingly or not, never gave you the space to cry, to grieve, to feel hopeless.

Those who aren’t there for you in the ways you needed them to be.
Because in that anger, you will meet your grief — your deepest sowrrow.

The pain of self-denial.

You’re angry with your family because they (unconsciously, unintentionally) taught you to deny yourself in order to be loved.

Now, in times of helplessness, loneliness, at the darkest point of your being, the longing for love — love for yourself — becomes so strong that you can’t help but make space for it. And in that powerful, beautiful act of turning toward your pain, you begin to realize: it was you who has abandoned yourself.

This realization will first separate you from certain people.
Because you’ll want to understand how this could have happened — how you became so distant from yourself.

And you will understand — because you are incredibly persistent.
You won’t give up until you fully grasp it.
Not just with your mind, but with your heart.

And once you fully understand — you’ll forgive.
The anger will soften and the grief will settle.

You will come to know:
You are here to take up space — a space that was made for you, and that takes nothing away from anyone else.

That space is yours to fill — with all of your presence, your emotions, your thoughts, your energy.

Yes, that will bring fear and resistance again.
But this time, you’ll know: that too is okay.

You will learn not only to see and feel yourself, but to share your experienced self with others.

You will learn to turn the shell of self-awareness into a stage.
Because what you have to give matters — and may inspire others.

Like a tree that grows strong and tall toward the sky, drawing nutrients from the earth and anchoring itself with widespread roots — you, too, will take up space — but at the same time —offer shade, bear fruit, and begin to share.

Yes, Lisa — and just as you write these words now — this article will be the first fruit that you offer to others — truly and from the heart.

P.S.
The report from the human genetics lab is dated May 5, 2020. You were born on May 5, 1991. You can see it as coincidence — or as the rebirth of your self.

“The diagnosis wasn’t the end —
it was the beginning.”

The journey started with a life-changing event that wasn’t easy to handle. But eventually, led me back to myself. I’ve learned that real strength isn’t about hiding fear — it’s about giving it space. That vulnerability is not a flaw, but a bridge. Maybe you, too, have known moments when life knocked you off track — maybe you’re right in the middle of one now.

Then let me tell you this:
You are not alone.

And sometimes, where it’s darkest, a new light begins to rise.

Always with courage,
Lisa