Most people living with dystonia have at least some idea about the importance of mindfulness, whether the word makes their eyes roll back in their heads or not. In general, people understand that In a condition defined by nervous system hyperactivity, where muscle contractions often increase in response to anxiety or external stressors, the importance of calming the nervous system is evident. Here’s the problem: to many people with dystonia, devoting time and space to take care of their own needs and finding a sense of calm - is the polar opposite of their natural state. Some studies (which fit with our experience at Re+active) show that individuals with dystonia tend to be “Type A” personalities, high-performing at their jobs, and take on excess responsibility in their occupational and family lives. Task-specific dystonias - runners and musicians being two of the most common - occur primarily in high-performing individuals. Think marathoners, triathletes, and orchestra musicians with regular performance schedules. These are people who have often lived their lives routinely pushing themselves beyond their natural limits, working past the point of pain or fatigue. To many this is a point of pride - it’s what makes them successful, part of what defines them. Naturally for some, this mindset related to their job or athletic or musical pursuits leaks into other aspects of their lives, meaning the idea of “self-care”, or “mindfulness” can be foreign or uncomfortable for them. They might think “I’m not the type of person who needs this”, or “Who has time for that?” 

This is a generalization of course, but even if this does not apply to you - having dystonia is inherently dysregulating. Attending to symptoms is stressful, having your body betray you is stressful. It’s easy to be tense, and to stay tense. When the default state is an excess of sympathetic tone, when work and life obligations cause us to push through our activities in a constant go-go-go even as dystonia interferes with it, this creates an internal environment conducive to more stress, and worse symptoms. This is what mindfulness is attempting to disrupt, and why it is so important - but also why it is so challenging. 

People with traits associated with dystonia often approach mindfulness with the same strategy as they approach their jobs, their workouts, and life. They might think:

“If mindfulness is important, then I have to do it - even if I am very stressed or tired.”

“If one mindfulness meditation is good, two must be even better.”

This approach is what I like to call “Mindfulness or else”. The problem is that it doesn’t work. Why? 

You cannot regulate your nervous system by force. 

In attempting to use mindfulness in this way, it invites a state that is in opposition to the goals of the practice. Distracted repetition instead of present awareness to the body and thoughts. Annoyance instead of acceptance. I am not a therapist or a psychologist, but neither are most people with dystonia. And the good news is, you don’t have to be to enjoy the benefits of mindfulness practice. I have seen what works for individuals with dystonia, and what doesn’t. So what does successful practice look like? I like to think about mindfulness in terms of 3 things: the goal, the how/when, and the what. 

Let’s start with the goal: in dystonia the nervous system is overactive, keeping the body in a constant state of stress, fear, and anxiety. With mindfulness, we are attempting to find balance in the nervous system, to restore a more parasympathetic tone and calmer state. Achieving that state is what allows the system to heal, and for positive changes to occur. 

Notice I did not say the goal is to reduce symptoms - because in the moment, it might or it might not, but this is not the goal. The goal is changing the chronic state of stress over time, creating an environment for change.

How/when to do mindfulness? Adding mindfulness cannot be in itself an additional stressor. Trying to cram in a meditation or breathing exercise at the end of a stressful day when you are so tired you just want to fall in to bed will not be helpful. Take time to try - you will likely find ways that don’t work, but over time you will learn to recognize the positive signals that your nervous system and body provide. For many, a quick moment of mindfulness on their commute, or prior to a public outing that seems daunting works well, for others, after a workout or finishing a project can be best. If this is new to you, let your body tell you the answer

This leads into the what. Mindfulness can take so many forms: mindful walking, guided meditation, body scans, yoga, mindful eating, breathing exercises, and more. For my patients, starting with their favorite locations or activities is often a helpful introduction. No matter what method you try or land on - it must be true to you. The practice should bring attention to your body signals and thoughts - and breaking the connection between that attention and negative emotions that further increase those symptoms. 

The mindset shift that we ask our patients with dystonia to make is subtle but essential: the method you choose, and how often you do it - are actually the least important things. The only important thing is the goal. That means that some days, what helps you listen to your body’s needs and find a state of calm - might mean allowing your body to tell you that it needs rest. It might mean choosing small mindfulness “snacks” rather than committing to week-long meditation retreats. Instead, the goal should be about taking the commitment and dedication that our patients so often give to their jobs, families, and others, and giving that same attention and empathy to themselves. 

So, take a breath. Try things out - see what helps you break the connection between symptoms and stress. And remind yourself: you cannot regulate your nervous system by force. Learning to listen to what your nervous system is telling you is a process that takes time. Think of it as a new challenge - it can make all the difference. 

If you are interested in learning more about Re+active’s approach to dystonia recovery, and how you can make positive changes - we’re here to help. 

• Sign up for our dystonia freebie: a free guide for people with dystonia
• apply for a program on our website
• become a dystonia education class member 
• and share this article with anyone you know with dystonia 

Still not sure how to get started using mindfulness? Download this free resource with two simple mindfulness practice strategies! 

Dystonia Mindfulness: 2 Simple Strategies

Dr. Lincoln Beal, PT, DPT, NCS 

Physical Therapist 

Dystonia Program Director 

re+active Therapy and Wellness 

References: 

1. Davidescu EI, Odajiu I, Tulbă D, Mitrea I, Cucu C, Popescu BO. Psychological Traits and Behavioural Influences in Patients with Dystonia-An Observational Cohort Study in a Romanian Neurology Department. Life (Basel). 2021;11(7):612. Published 2021 Jun 24. doi:10.3390/life11070612
2. Santoro MA, English I, Sezer I, et al. Improvement of Tardive Dyskinesia during Mindfulness Meditation. Neurol Int. 2021;13(3):439-444. Published 2021 Aug 30. doi:10.3390/neurolint13030043