The Grief of Dystonia: When Life Becomes Smaller and Nobody Understands
Jun 01, 2026
This article is based on a video originally published on the Hope for Dystonia YouTube channel.
Today I want to talk about something that, in my experience, is huge with people with dystonia. Something I have been through. Something I see in clients all the time.
It is not talked about. And there isn't enough support around this.
I'm talking about grief.
There is real grief around dystonia. Grief that a lot of people don't understand—especially when the symptoms of dystonia are not visible. The people around us may really not understand what is going on with us, and why we are sad, grieving in the first place.
And this lack of mirroring, this lack of attunement, this feeling of being misunderstood and not seen—is extremely painful.
I remember it vividly.
Watch the Full Video
Living With Dystonia Means Losing Things Most People Never See
The Different Kinds of Grief
I want to talk to you about the different kinds of grief that I have seen. And I want to start with the kind of grief that I experienced most strongly.
It was really the grief around who I was—combined with the grief around who I thought I was supposed to be and who I thought I could be.
The Metaphor: Colors, Brushes, and Canvas
Let me illustrate this with a metaphor I used to share with friends.
I told a friend who was wondering about what was going on with me—why things were so hard, what it was that I was grieving, really, with all my symptoms that he couldn't understand or see:
Every Person Wakes Up With a Palette
"Every person wakes up in the morning and has a whole palette of colors, and different brushes, and a canvas every morning.
Each person gets to color their daily canvas in a way that feels true to them—that feels right, that feels exciting, that feels right in whatever way.
At the end of the day, we all have our canvases. Depending on the colors we chose and the brushes we utilized, we come up with different kinds of paintings."
My Canvas Was Shrinking
"What I am realizing is that I am waking up and I have fewer and fewer colors at my disposal. I have fewer and fewer brushes. And my canvas is smaller and smaller.
We all have those days. But for me, it's starting to build up.
I thought that I would paint all these beautiful paintings, and that over the course of months and years, they would amount to something. And I'm realizing that it's just not happening.
I'm not getting the same colors and the same brushes. My nervous system is just not ready to help me do what I think I should do."
The Reality at My Worst
That was my experience at the time. And there was real sadness around that.
There was a feeling of being misunderstood and judged—even if a lot of the time that wasn't true. But a feeling of being misunderstood and judged because I came up with tiny little paintings, so to speak, in black and white.
I couldn't do much with my days.
When my dystonia was at its worst, all I could do was wash a few dishes—and then I would spend the rest of the day in bed in pain.
That was it.
Two Layers of Grief
Grief Around Who I Was
There's the grief around the person I was. The person who could:
- Study full-time AND have an internship AND have a part-time job
- Perform in a way I thought was productive and admirable
(Spoiler alert: it wasn't really. But I didn't know it at the time.)
Grief Around Who I Should Have Been
But there was also grief around what I thought should be and wasn't:
- All the things I thought I should be able to do
- All the things I wanted to do
- The opportunities that were lost
- The fact that I had to say no to more and more things
No to hanging out with friends. No to working on my business. No to taking on new projects. Just no to life.
The Walls Closing In
That feeling of the walls closing in—and life becoming smaller and smaller—was devastating.
And of course, together with that grief, there was comparison. I would compare myself to friends who were able to do all of these things without any problems. They were building their lives. We were in our 20s and 30s. They were getting married and building their careers.
And I was stuck in bed.
It was tough.
The Grief of Being Misunderstood
I see many different flavors of grief with clients.
Perhaps the single most common thing I hear is:
"I am grieving the feeling of being understood, of being seen.
I thought people could get me, could understand me. And now with dystonia, I feel like I'm some sort of alien having this weird condition.
People don't understand my limitations. People don't understand that when I say I can't do something that seems obvious to them, I really mean it. My body is just not willing to do the things I think it should do."
That feeling of all of a sudden being weird and misunderstood is its own kind of grief.
If This Is You
If this is you—in any way, or any other flavor of grief—I want to tell you:
I get it.
I understand.
And you're not alone.
In fact, one of the central pieces of the Academy is helping you feel understood again. Helping you feel seen again. And helping you heal from there.
How We Work With Grief
The way we work with grief is not by suppressing it. Not by saying "I should just not go through this" or "I should power through this."
It's actually by saying:
"How can I open my heart to my own pain?"
"How can I make room for this grief?"
"How can I bring love right where it's needed?"
Sounds Easy, But It Isn't
This sounds easy, but it isn't. It takes guidance. It takes community. It takes practice.
But here's the deal:
Once we learn how to do this, our sense of who we are expands.
We are no longer identified with the emotion, the grief, the story of who we should be.
And the door opens to us becoming someone new:
- Someone wiser
- Someone more in our hearts
- Someone less tied to the vicissitudes of daily life
- Someone who has broader perspective
- More presence
- More capacity
Dystonia Is Happening FOR You
It might be hard to hear this when we are in the midst of grief.
But dystonia is not happening TO us. Life is not happening TO us.
Life is happening FOR us. And yes, dystonia is happening FOR us.
My Biggest Gift
In retrospect, I can tell you that dystonia—and healing from dystonia—was perhaps the biggest gift I received.
In that it forced me in a way to grow. It forced me to come into my heart. It forced me to face the patterns within me that were running the show under the radar, without me really realizing.
Opening My Heart Changed Me
Opening my heart to my own experience—and yes, to my own grief—helped me become a more liberated person.
I am not run by the same patterns in the same way.
I still have plenty of reactivity and all kinds of things. Don't think I've arrived at some sort of Nirvana.
But that's not the point.
It's not about getting to total peace—at least not yet.
It's about saying:
"Can I live this life with more empowerment?"
"Can I live this life not at war with myself, but in alignment with myself?"
"Can I live this life in a way that feels fulfilling—where I can, little by little, find all my colors again, and all my brushes, and my canvas can grow bigger and bigger?"
The Gift of Relating to Dystonia Differently
That is the gift we can receive when we relate to our dystonia differently.
Not fighting it. Not suppressing the grief. Not powering through.
But opening our hearts to our own pain—and finding that in doing so, we become more than we were before.
The Flavors of Grief in Dystonia
Grief Over Who You Were
- The person who could do everything
- The high achiever, the performer
- The "productive" version of yourself
Grief Over Who You Should Have Become
- Lost opportunities
- Saying no to life
- Watching others build their lives while you're stuck
Grief Over Being Understood
- Feeling like an alien
- People not understanding your limitations
- The invisibility of your suffering
Grief Over Your Shrinking World
- Fewer colors, fewer brushes, smaller canvas
- Walls closing in
- Life becoming smaller and smaller
The Path Through Grief
What Doesn't Work
❌ Suppressing the grief ❌ Powering through ❌ Pretending it's not there ❌ Comparing yourself to others ❌ Identifying completely with the emotion
What Does Work
✅ Opening your heart to your own pain ✅ Making room for the grief ✅ Bringing love right where it's needed ✅ Being seen and understood (community) ✅ Recognizing grief as part of the journey, not a failure
What Becomes Possible
- Expanded sense of who you are
- No longer identified with the grief
- Becoming someone wiser, more present
- Finding your colors, brushes, and canvas again
- Living in alignment rather than at war with yourself
The RAIN Meditation for Grief
On the Hope for Dystonia YouTube channel, you'll find different meditations. There's one in particular called RAIN—Recognize, Allow, Investigate, and Nurture.
I've adapted the RAIN meditation to really fit individuals with dystonia. I learned it from incredible teachers—Tara Brach, Jack Kornfield, and others.
This version of RAIN can really help you with grief. If you're looking for an immediate resource, go check that meditation out.
Your Next Step: The Recovery Roadmap
If you recognize your grief in what I've described—if you're living with a shrinking canvas and fewer colors—we invite you to download the Hope for Dystonia Recovery Roadmap.
This free resource provides:
- A framework for understanding dystonia as something happening FOR you
- How to work with grief without suppressing it
- The path from being at war with yourself to alignment
- Introduction to the Self-Healers Academy community
- Tools for opening your heart to your own experience
Download Your Free Recovery Roadmap →
This is invaluable, life-changing information that will help you turn this around.
