Dystonia Is Not Just a Muscle Problem | Hope for Dystonia

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

For years I worked on my cranial nerves, my jaw and my tongue, and I could only get so far. The shift came when I started working on the wounding I carried within — the patterns that kept my nervous system in a state of chronic dysregulation. Once I learned to work with them, I found a degree of freedom I did not even believe was possible.

If you’re on a healing journey, this one is for you. Most of us think of dystonia as a muscle problem. In this article I want to bust that myth and walk you through the five patterns I had to rewire to get my life back — patterns that stay hidden for most of us. As you read, I invite you to keep an open mind and ask yourself: do I do this sometimes? You may find surprising patterns in yourself that are actually opportunities to heal.

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Is Dystonia Really Just a Muscle Problem?

We tend to think of dystonia as a muscle problem, and to pin the problem on the specific muscle that’s affected. If we have spasms in our neck, the neck becomes the “bad” muscle. If our hand cramps when we play an instrument, we decide there’s something wrong with the hand.

And of course we want to take care of the specific muscles that are affected — looking at hypo- and hypertonic muscles is a big part of what we do in the Academy. But on its own, this misses the mark. More often than not, dystonia is a pattern of chronic dysregulation that just happens to be visible in those specific places, while it actually affects our entire nervous system.

Patterns We Learned Early, Through No Fault of Our Own

More often than not, there are patterns we adopted — sometimes very early on — that keep us in that state of chronic dysregulation. And we did so through no fault of our own. We learned that certain strategies were useful, and we adopted them.

The ways we behave, the ways we think, the ways we relate to our emotions, the way we navigate our inner landscape and the way we are with other people are all relevant to chronic dysregulation. Often it shows up in those places well before it shows up as a visible spasm, and well before it organizes our movement.

This is not an exhaustive list, but these are five of the most common patterns I have noticed in myself and in others.

Pattern 1: People-Pleasing

Yes, that famous fawning — the desire to placate everyone and make everyone happy before we even consider our own needs. I have had the blessing of working with individuals with dystonia for seven years, and this is something I see extremely often.

At its core, people-pleasing is a strategy we adopted at some point. It tells us: if we want to stay safe, if we want to make sure no one yells at us, if we want to be psychologically safe and relaxed, we need to bend over backwards to meet everyone’s needs. Sometimes we also do it because it earns us praise. As children, maybe we were the kids who always made mom and dad happy, or who took care of everything they were too busy or overwhelmed to take care of — and we saw that making them happy brought praise and love. That became a strategy we carried into later parts of our lives.

The cost is that we forget ourselves. We don’t just put our needs on the back burner, we toss them out the window. We paint ourselves into corners we don’t want to be in, and then we’re at war with ourselves, feeling like we shouldn’t be feeling what we’re feeling. At some point the nervous system can’t keep it up, and the body tells us so.

That’s when we feel lost: do I need to be selfish? Do I need to stop taking care of other people? It doesn’t make sense when we’ve lived in this pattern. What helps is reconnecting with what we want and what we need, and recognizing that these are the compass that lets us build a life where we can stay in our window of regulation. We need to make those needs legitimate again.

Pattern 2: Perfectionism

Perfectionism is all about making sure we never make mistakes, that we’re never wrong, never vulnerable, never criticized. We hold up the highest possible standard so that we are safe, and so that we can maintain a good image of ourselves. It’s a way of managing our self-esteem and our sense of shame.

And it’s an exhausting pattern. It keeps us in chronic dysregulation because it never ends: everything is a test, everything can be improved upon, and there is never a day off for a perfectionist. We stay in a kind of sympathetic over-engagement, stressing ourselves out and never letting our guard down.

We have a hard time relaxing in the knowledge that we are enough the way we are. We grasp at the idea that if only we do things the right way, we’re good people — and once again it’s a trap that keeps us dysregulated. That dysregulation can then get mapped onto all kinds of other factors that may lead to the visible symptoms of dystonia.

Pattern 3: Hypervigilance

Hypervigilance is about waiting for the next shoe to drop. We’re always feeling that some new danger will inevitably come, as if we’ve been trained to brace for impact. For some of us, that’s really how we grew up: there was always a new crisis, someone yelling or worse, or some sort of uncertainty that led us to guard and to create tension internally — and, of course, in our bodies and our muscles.

Needless to say, hypervigilance keeps us outside our window of regulation, in a constant fight-or-flight mode. It has us jump at every little noise, or see danger everywhere, even when there isn’t any. In many ways we end up making an enemy of the world. And when life throws us a curveball, we’re already running on an empty tank.

That’s why it’s so important to help the nervous system reconnect with a sense of safety — and that is something that can be done.

Pattern 4: Hyper-Independence

Hyper-independence comes with a need for control, and sometimes a need to do everything by ourselves, on our own, not needing anyone. I’m just going to do it better myself. I can’t rely on anybody. I don’t need to open up to anybody. I’ve got this under control.

But that’s just not how life works. We are social beings, and we all end up needing someone. Hyper-independence is really driven by fear — a fear of disappointment and a fear of vulnerability. It’s a guarding pattern, a pattern of protection.

This too keeps us tense and in chronic dysregulation, because we never let ourselves be held or supported, and we can never let go. The whole world is on our shoulders, and that makes it so much harder to find regulation.

Pattern 5: The Guarded Heart

The fifth pattern is the trickiest one. The guarded heart is often the pattern of someone who wants to trust, who wants to relax, who wants to connect with others and open up — but feels there is a wall. And the minute there’s a little bit of opening, there’s a pull to go back to guarding, or to freak out, or to push the other person away.

This is something to look at with a lot of care and tenderness, because this push-pull pattern is rooted in early experiences that told us connection and relaxation — and the sources of those things — were unsafe. So we learn to want connection and to freak out when it’s available. We learn to want relaxation and soothing, and then we need to fight our way out of it because it has become unsafe.

The push-pull dynamic of the guarded heart requires a lot of patience, attention, tenderness, love and care. If we want to stay in our window of regulation, we need to teach that wounded part of us that staying there is okay — that it’s safe, and that we don’t have to jolt out of it.

These Patterns Are Not a Sign That Something Is Wrong With You

As you read all of this, take a moment to check in with yourself. Some things may resonate immediately. Some you may be trying on for size. Some may feel tender, like you’ve touched a sore spot. If that’s the case, be gentle with yourself and don’t rush through any of it.

If these patterns exist in you in any way, they are not a sign that something is wrong with you. They are opportunities — possibilities for change, for healing, and for cultivating the regulation we keep talking about.

You Can’t Convince Yourself Out of a Pattern

Here’s the catch. You don’t come out of perfectionism by telling yourself you should stop being a perfectionist. You don’t step out of hypervigilance by telling yourself everything is okay. You can’t just convince yourself to stop one of these patterns — it doesn’t work. (If you haven’t seen it yet, my video on the 3 depths of change sheds a lot of light on why.)

For the nervous system to feel ready to change a pattern, it needs to trust that it’s okay to do so. That happens through successive experiences of safety. It doesn’t happen through convincing, discipline, or practicing specific exercises — whether affirmations or exercises for dystonia. To go to the root, we need to give the nervous system enough experiences of safety, attunement, delight in your essence, soothing, and encouragement. These are five qualities of secure attachment, and they are at the heart of what we do in the Academy.

When we experience enough of them, we build an inner secure base. From there, it’s much easier to judge whether something truly calls for vigilance. It’s much easier to opt out of a perfectionism that says we must constantly prove we’re good enough. And it’s much easier to come back from a moment of anxiety or panic, because we have a way to orient in our experience.

Even as adults, our nervous systems are plastic and can change. We can’t control or force the nervous system to do this or that — but we can provide the messages it never received enough of early on, and allow it to adapt. Just as, in dystonia, it learned to adapt to messages that led to maladaptive learning.

What Changed for Me

I did plenty of work on the cranial nerves, learning to awaken what was sleepy in my face, my jaw and my body, and plenty of work trying to repattern my jaw and my tongue. And I could only get so far, until I started working on the wounding that led me to stay in a state of chronic dysregulation.

Once I learned to work with these patterns, I wasn’t just able to do something different with my jaw, my neck and my face. I was able to opt out of the spirals of dysregulation that led to episodes of spasming and pain in the first place. I used to be terrified of putting myself out there, because I thought I was secretly bad and flawed, and I worked so hard to keep people from seeing it. That kept me miserable — until I learned to give my nervous system experiences of unconditional love and delight in my essence.

That allowed me to show up in the world with greater and greater trust that I’m fundamentally okay. It brought so much more ease into my body, and it helped me take the volume way down on the spasms and pain of dystonia. It was a crucial piece of my recovery, and I have seen it over and over with the individuals I’ve been blessed to work with.

So if this is you — if you recognize these patterns of chronic dysregulation, the ones I mentioned or any others — please trust that even as an adult, things can change. It takes the right kind of support and guidance, and that is what I try to offer through the Academy.

Your Next Steps

There are two free resources that pick up exactly where this article leaves off:

1. The free Dystonia Recovery Kit. The foundational information I wish someone had handed me when I was in the thick of it.

2. The free workshop. Dystonia Myth Busting: The Five Patterns I Rewired to Get My Life Back, live on Zoom on Sunday, November 15, at 12:00 PM EST / 9:00 AM PST / 5:00 PM GMT. A recording is shared with everyone who registers.

No cost, no catch — just a new way of understanding your body and yourself. Much love to you.

If I did this, so can you.