The Inner Experience of Dystonia: The Exhausting Vigilance Nobody Talks About | Hope for Dystonia

This article is based on a video originally published on the Hope for Dystonia YouTube channel.

Today I want to talk to you about something that not a lot of people talk about: the inner experience of dystonia.

It is my hope that you'll see yourself in this—that you'll recognize your experience. And I hope it will help you feel seen, understood, that there's someone who gets it.

And most importantly: that there is a way out.

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You Stop Realizing How Much Effort You’re Using

The Constant Inner Monitoring

I want to focus on one particular topic: vigilance and monitoring.

A lot of us spend a ton of time with this constant inner monitoring—and we don't even realize that we're doing it.

Let me give you a couple of different scenarios where this really shows up.

Scenario One: The Kitchen Cabinet

Imagine you have dystonia in your face, in your neck, and/or generalized in your entire body.

Now imagine you have to put away some dishes in a cabinet where you can reach, but it's a bit awkward.

You have to squat. You have to reach into the cabinet. You have to maybe move around some other dishes that are in the way.

What Actually Has to Happen

In order to do this, there is actually a lot that needs to happen:

You need to squat — which is its own challenge for a lot of people with dystonia.

You have to coordinate your two hands.

You have to coordinate the muscle tone in your neck, in your shoulders, in your face — as you use your eyes to find exactly what it is that you're going to do and where you're going to put your dishes.

You have to manage the muscle tone in your body, in your diaphragm, in your pelvic floor — especially as you're squatting.

What You Experience

Maybe you're not aware of all of this. But all of it is happening.

And maybe you don't realize, but the simple action of putting the dishes away feels:

• Annoying
• Difficult
• Challenging in a way that causes your body to tense up

So as you approach the kitchen, there is a sort of tension. A sort of dread. A sort of maybe pain that comes on.

For a lot of us, that is not even explicit. It's not something we think about in these terms.

We just think: "Being me is painful. There is tension. And no, I don't like to work in the kitchen."

The Background Tension

This kind of background tension is always there.

And we end up just thinking that this is how we are.

Scenario Two: Meeting Someone New

Let me give you another example—a social one.

Imagine you have dystonia in your face. Maybe you have blepharospasm—tension in your eyelids that causes them to close shut in certain situations.

You're going to meet a new person. You know they're coming over in, let's say, half an hour.

What Starts Happening Internally

Internally, something begins to work already. You begin thinking:

"Oh my gosh, how am I ever going to manage my symptoms in such a way that they don't think I'm weird?"

"How can I make a good impression on this person?"

"How am I going to explain what is happening in my face? How can I explain that my eyes close shut?"

"How can I not get nervous and actually maybe keep my eyes open a little bit?"

"How can I look normal?"

"What will this person think of me?"

"How can I not make this conversation awkward?"

And maybe this person is coming over because you actually need to work on something together. So you're also thinking:

"How can we actually work on that something if this person's attention is going to be on my eyes and on my face the whole time?"

Very Typical

All of this is very typical. It's another example of the same kind of guarding I spoke about in my first example.

Two Kinds of Guarding

It's guarding of two kinds really:

Guarding Type One: "I need to look okay."

The monitoring of appearance, of symptoms, of how others perceive us.

Guarding Type Two: "My body doesn't know how to organize itself properly, and so I just dread doing certain things."

Maybe you dread getting up in the morning and doing anything at all—because you know that the minute you open your eyes, all of this is going to start happening.

Or maybe you dread coming to your instrument—because the minute you look at it, something in your hands starts spasming.

The Cost: Everything Becomes a War

This has a cost.

This is exhausting.

Because everything becomes a war. Everything becomes the kind of situation where we have to tense up, where we have to have this extra monitoring on ourselves—rather than just being.

If This Is You

If this is you—and I know that this is you, if you have dystonia in ways that maybe you recognize, and perhaps ways that you don't yet recognize—I want to tell you that I get it.

I understand.

You are not alone.

And this is not you forever.

This Is Learned—And Can Be Unlearned

This is just a way that you have learned to function.

This is learning that has compounded—different layers of adaptations.

And all of these layers can be undone.

Not Through Force

They can be undone not through force, but through moments like these:

• Moments of recognition
• Moments of being seen and attuned to and understood
• Moments that can help your nervous system have a different experience—one where it can relax

Little by little, as these experiences accumulate, this can become the default of how your nervous system organizes itself.

From Chronic Guarding to Safety

This can be done. We do it all the time in the Academy.

It's a powerful way to rewire your nervous system:

Away from chronic guarding Away from chronic monitoring Away from the chronic tension that says the world is an enemy and reality is a battle and I'm a warrior

Toward safety Toward attunement Toward a different way of being

It May Feel This Way, But...

I know it may feel this way—like life is a constant battle, like you're always at war with your own body and the world around you.

But again, this is just something that you have learned to do. And you can unlearn this.

Your Brain Retains Plasticity

I'm not saying this lightly.

Whatever situation you think you're in that might be hopeless... or you think you've had this for too long and you're too far gone... or you're too old...

Your brain retains plasticity.

It retains the ability to learn and change.

The Two Scenarios Compared

What You May Not Realize

Here's what many people with dystonia don't recognize about their own experience:

The monitoring is constant. It's not just in obviously challenging moments—it's background noise that never stops.

Simple tasks aren't simple. What seems like a minor action (putting away dishes) actually requires enormous coordination and creates tension.

The dread starts before the task. You begin tensing up as you approach the kitchen, before you've even done anything.

You've normalized it. You think "this is how I am" rather than recognizing it as a pattern that developed.

It's exhausting. The energy cost of constant vigilance and monitoring is enormous—but because it's always there, you may not notice it.

The Path Forward

Recognition Is the First Step

Moments like these—moments of recognition, of being seen and understood—are not just emotionally comforting. They're actually how the nervous system begins to change.

When you recognize: "Oh, this is a pattern. This is something I learned. This background tension isn't just 'how I am'"—something shifts.

Accumulation of Different Experiences

The nervous system learns through experience. By accumulating moments where it can relax—moments of attunement, safety, recognition—a new default can form.

This isn't about forcing relaxation. It's about creating the conditions where relaxation becomes possible.

What the Academy Provides

In the Self-Healers Academy, we work with exactly this:

• Recognizing the patterns of vigilance and monitoring
• Understanding the layers of adaptation that have compounded
• Creating experiences where the nervous system can learn something different
• Building a new default—one of safety rather than chronic guarding

You Are Not Alone

If you recognize yourself in these scenarios—the kitchen cabinet dread, the social anticipation anxiety, the constant background tension—know this:

You are not alone.

I understand.

This is not you forever.

This is learning that can be undone. Layers that can be released. A nervous system that can organize itself differently.

Not through force. Through recognition. Through being seen. Through moments that accumulate into a new way of being.

Your Next Step: The Recovery Roadmap

If you recognize your experience in what I've described—if you feel seen for perhaps the first time—we invite you to download the Hope for Dystonia Recovery Roadmap.

This free resource provides:

• A framework for understanding the inner experience of dystonia
• How vigilance and monitoring develop and compound
• The path from chronic guarding to safety and attunement
• Introduction to the Self-Healers Academy approach
• Tools for beginning to create different experiences for your nervous system

Download Your Free Recovery Roadmap →

This is invaluable information that will help you make sense of things and take charge of your recovery.

Final Thoughts: Being Me Doesn't Have to Be Painful

"Being me is painful. There is tension."

If this is how you experience life—if the background tension is always there, if every task feels like a battle, if you're constantly monitoring and guarding—I want you to know it doesn't have to stay this way.

This is not who you are. This is what you learned.

And what you learned, you can unlearn.

Not by forcing. Not by fighting harder. But by accumulating moments of recognition, attunement, and safety—until these become the new default.

Your brain retains plasticity. It retains the ability to learn and change.

Whatever situation you think you're in—however long you've had this, however far gone you feel, however old you are—you can do this.

You are not alone. And there is a way out.

Ready to feel seen and begin creating a different experience for your nervous system? Download the free Hope for Dystonia Recovery Roadmap and discover the framework that makes lasting change possible.

Download the Free Recovery Roadmap → 

The Roadmap offers invaluable information—the kind of orientation I wish someone had shared with me when I was in the thick of it.