Dystonia and Anxiety: How to deal with social anxiety caused by Dystonia Symptoms

Kim Amburgey

For people affected by Dystonia, fear, discomfort or anxiety of speaking are often observed, especially in social situations. This can be heightened due to the embarrassment stemming from movement irregularities.


In this post, I will follow up on a related patient experience about social discomfort and dystonia and another on  depression and Dystonia by sharing some tips to manage your Dystonia related anxiety, stress, and symptoms in social situations.

Ideas to help you achieve your emotional balance when you need it the most

Practice Dystonia Relaxation Exercises before social situations

When first reengaging socially, start out small with little external stimuli.  Go for walks with another where you can chat while moving, or sit together on a bench.  Being side by side takes face-to-face fears and stimuli off the table.  Or pick a gathering that has the focus on things other than social interaction – like a card game, singing in a chorus, watching children play in the street while chatting with a neighbour. Try to pick a venue that isn’t so intense – for instance, a quiet park has far less external stimuli than going to a loud restaurant.  Less stimuli = less triggers.  You can build up to larger venues and more stimuli – every time you attend an outing you will become desensitised to it that much more.

Practice your dystonia relaxation exercises just prior to the outing (and regularly as part of your daily efforts).

Items like Breathing Exercises, Qigong, TaiJi and some Therapeutic Music can be very helpful.  Find what works for you.

Once you are very comfortable with meditating, try to do so in different venues.  At first make it a quiet spot.  You can then, over time, add in external stimuli (noises, etc.).  You can also have your eyes partially open, just a bit, so you include desensitising yourself to any visual stimuli.  The objective is to be able to continue your calm state despite the activity outside of you.  This will help prepare you for public events that have a lot of sounds, visuals, etc., that can trigger our symptoms.

Start your Recovery Journey Today

Join the complete online recovery program for dystonia patients.

Using Eye Exercises to Improve Relaxation Responses to Anxiety

“The eyes of the other are not eyes because you can see them. They are eyes because they can see you.”  (Antonio Machado, Spanish poet)

If you have eye contact avoidance, often look down, or you stare at others unblinkingly, these issues can exacerbate our social discomfort.  We do this unconsciously from our overactive fear response and also our sensory overwhelm (averting eyes limits visual input, staring gives us a sense of control), and this type of eye contact sends a message to our brain that we are in a defensive response mode which causes our anxiety to kick in.  With regular training, we can override our unconscious bias to look away or to stare.  By making it conscious it can be overridden.  Eventually the practiced proper eyeball movements produce contextual muscle memory so the new tracking can run unconsciously in the background without asking for it.  The process needs to be combined with a relaxed confident approach.  Practice in a calm setting at first, eventually with people you find comfortable, then the general public.

To work on eye contact, while desensitising yourself to the human face and eyes, you can start with a photograph.  You can see their eyes and it is easier as you can do so without reaction from their eyes (like the poem).  Put an enlarged photo up on a wall and walk towards it.  Look from one eye to the next in what is considered a normal fashion, as described in “tips for eye contact” link here.  You can then do the same looking at a face on a video or television.  Next step is with a real person – since you will be ‘allowing yourself to be seen’ (as in the poem), recruit a person you trust and feel comfortable with to help.  Practice looking at their face, eyebrows, eyes, nose, cheeks, mouth – for a few minutes at a time in each area, while they are looking at you.  Practice for a few weeks in silence at first, then with conversation, then add on ‘pretend’ heated conversation.  Your goal is to allow yourself to be seen, allow the increase of visual sensory input without reacting with anxiety or overall body tension, eventually “allowing yourself to be seen” with more and more people.

It is important to do the daily eye work in the ‘Eye Exercises’ folder.  Training our eyeballs to track properly, be in sync with each other, strengthen our peripheral vision and relaxation response – all these things directly affect the reactive/fear response and emotional centers of the brain, so correcting any deficits will reduce social anxiety.

Practice the ‘Eye Exercises for Social Anxiety’ they are similar to the desensitisation work described above but more encompassing.

They are also very convenient and crafted by Dr. Farias just for this purpose.  Do the social anxiety eye work daily for some months, but also just prior to any social gathering.  These exercises train us to make proper eye contact with others, and desensitize the human face of which we’ve grown fearful/angry/annoyed due to our inflamed fear response and emotional imbalance.

So what happens if we feel fine at home, but suddenly that goes out the window when we are with another or in a group setting?

For those with dystonia, it’s the transition between calm and reactive (stress in our case) that is the most difficult, as Dr. Farias says, we’ve lost the ability “to put on the brakes”.  We can go from 0 – 60 in a split second.  0 being a calm state, 60 being a full force over-reactive state.

The most important thing is to IMMEDIATELY NOTICE you are getting anxious.  NOTICE when your first bit of body tension starts.  Then start to act immediately to calm.  If you instead ignore the anxiety and try to forcefully restrict  your movements,  it will likely escalate your current symptoms and cause you pain in the long run from fighting it.

When we are anxious, our body is in a defensive posture.  Even before we are consciously aware, our undermined parasympathetic nervous system causes an uninhibited sympathetic fear/reactive/stress response that engages our body to automatically react defensively – with things like a change in heart rate, irregular eye contact, enlarged pupils, irregular breathing, tensing up muscles, sensitive hearing, dissociation from those around us  —  all of these things send a message to the brain that something isn’t right and that kicks off our anxiety.  For those with dystonia, this can exhaust our brain and interrupt some of the neural energy needed for proper movement, and the tremors/spasms begin.  This defensive posture sets off the emotions of anxiety as our mind is asking “What’s wrong?”  “Why are you so tense?”.  This in turn starts a loop with our dystonic symptoms, and both typically keep escalating without a deliberate break in the loop – either by leaving the gathering to get to less stimuli and a feeling of safety – or by slowly training ourselves to get out of defense mode at the gathering.

Start your Recovery Journey Today

Join the complete online recovery program for dystonia patients.

How to Switch off a Defensive Posture

We want to switch off the defensive posture and anxiety.  Ways to do this:

As a preventative strategy to soften your fear of worsening symptoms by satisfying others curiosity or concern, you can make a simple statement like “My muscle isn’t working well so you may see me move a bit funny.  I’m in rehab for it but until it improves, try to ignore as best you can.” You can follow that with “I know I will” and give a shrug or a laugh.  Humor and directness is a great calming technique for all.  This simple acknowledgement of your symptoms will take loads off of your mind of “What will they think?” and this will lessen your stress.  If someone asks how it happened, you can choose to go deeper into what dystonia is.  It depends on what you want from the conversation.  Talking about it with those unfamiliar or uninterested may leave you more stressed.  Sharing with those who care or are interested may be rewarding.

Think of the belly and make sure you are breathing! – slowly and deeply. Inhale (imagine into abdomen area), then exhale for a longer count  (for example, inhale for a count of 4, exhale for a count of 5, 6 or 7+).   You can inhale through nose and exhale through mouth (with lips pursed), or you can breathe in and out through nose if that is more comfortable.  Our attention is always on dystonia.  We loop the “I have dystonia” thoughts and changing our focus to the belly calms us by taking us out of our own head.  It also insures we are not rapid/shallow chest breathing from our fear response being triggered.

Try to excuse yourself to find a quiet place – a quick walk outside alone or with another, even stepping into a quiet alcove or restroom for a minute to do some calming techniques without all of the external stimuli.

Do regular body scans throughout the gathering to be sure your body is relaxed as possible in all areas that are currently within your conscious control.  Go from head to toe and relax any area that is tense – we can have compensatory muscles tighten up and many are distinguishable as we have the ability to consciously relax them.

We are hyper focused on others as we are disconnected with our own body and mind, so we become over-concerned with others’ assessments of us. One way to break this obsession is to bring it inside, calmly, by doing some self-soothing talk.  Thinking to yourself, “I am breathing deeper now so I am relaxing” (not ‘I am breathing because I am scared’).  “I am happy to be here and will quietly calm to enjoy this gathering”, “Relax, relax, relax” , “All is safe and I am ok”.

Become a good listener:  Stop trying to fill the silence by talking, especially if you are impatient to do so.  Let others talk more.  We can sometimes feel we have to carry the burden of a conversation, or fill in the empty silent moments, or get our point across quickly.  Relieve yourself of that responsibility and become an enthusiastic and content listener.   Allow the conversation or gathering to occur without your control.  This will give you more time to focus on your calming techniques.

We have to develop the ability to wait. We are often too prepared with what we want to say and have no ability to ‘let the conversation flow on its own’.  We have to learn to hold back, just as we are learning to manage our lack of inhibition in movements, we also do so with our thoughts.  Before you speak, be sure you are speaking from a calm place and not out of your impatience (a lack of inhibition).  First allow your body to be relaxed.  Your shoulders, abdomen, larynx, eyes, hands, jaw, all should be relaxed.  Then you can talk (if you are able).

Try not to internally react to every statement or action by other people.  You do not need to react, you can instead breathe deep in and out and allow yourself to be a detached observer.  Let others control the flow of the conversation until you are more desensitised and comfortable.

Initially we are making social contact, but maintaining the contact without trying to control nor to always participate.  The idea is that by exposure (without trying to participate) the intensity of the defensive, fear response lessens.

Do some visualisations, like this one suggested by Dr. Farias:  Imagine you are a big tree, with roots and branches. Others in the group are also trees.  Extend your imaginary roots and branches out to the other trees.  This can help you reconnect with others in a positive way.

You can use your hands to engage with others in a calm manner.  When speaking, have your hand extend outwards towards others to help you feel connected.  You can also use your arms/hands discreetly to calm your own tremors/spasms, by slowly moving your hands downwards, almost “directing” the spasms and tremors to go at the slower pace and eventually stop.

Gently touching or lightly tapping different areas of body can engage a neural network that helps us calm and softens movements.  Experiment and find if one works for you.  For example, those with CD can find tapping/touching next to the mouth/cheek area on one or both sides of face can calm their spasms/tremors.

Smiling tells our brain all is ok – smile if able, feel the sense of a smile if restricted.  Smile knowing that in your heart you want to be able to socialize comfortably again, and you will.

Become a hugger. Hugs (with a willing other person) help us feel connected and cared for.  Ask family or a group of friends if they would do a hugging experiment – that every time you meet up – you greet each other with a quick hug.  It can help break the tension you feel, and you would be surprised how many human beings are longing to be held in the same manner so everyone benefits.

Pick one or two of the suggestions above and try them for a few outings – do not try to do them all during one outing as it will just cause you anxiety and be counterproductive.  It’s about consistent, patient practice.  Find the ones that suit you best over time.  Sometimes a tried and true method to help socially stops working.  This is normal.  Just try another and alternate them, eventually you can go back to your favorite methods as they will feel effective again.  If you have methods that help you, please share them with us by making a post in the forum.

Sometimes nothing will work and you just have to deal with it for that outing.

Maybe the visit to the dentist, gathering with acquaintances or your workday was just too stressful and your efforts to calm didn’t work or eventually stopped working – you got into “the loop” and couldn’t get out again.  Your dystonia may be in a highly symptomatic cycle, and your symptoms may also reflect the phase your are in.  Whatever the case, just let your symptoms happen and be honest with anyone watching.  Relax when you get home and try your hardest not to beat yourself up about it.  Remember – you did not create this problem in yourself – it’s something that happened TO you.  Give yourself as much understanding as you would give a total stranger with the same condition.

There will be another outing and you will be that much more prepared for and desensitised to it.  Try again and again as eventually it will get easier.

Remember, you are still working this program so internally, without you realising it, your body is getting more in sync, more at peace and this will help with your social engagement both on the physical and emotional side.

Those with dystonia have one character trait in common —  we are not a patient bunch of people!  We want improvement quickly, but improvements in emotional health that trigger our symptoms can take time, years for many, but it is achievable.

It’s all about patience, mindful practice, and most importantly self-acceptance because who knows how long we will have some symptoms socially so we may as well get comfortable with it.

A friend of mine with Blepharospasm, who has been following Dr. Farias’s protocol for over 8 years told me,  “You know, even though I’ve gotten most of my function back, I continue to notice subtle improvements.  Every year I look back and realize that, even if it’s in the slightest increment, I’ve improved.  Not just with having less triggers for eyelid spasms, but with overall happiness.”

We are on a life changing journey.  Having an expectation of immediate improvement or a cure will get you nowhere but frustrated.  Taking on this protocol as a long term goal for incremental improvements in physical balance and mental peace is the most logical and effective way forward.

Hope something above helps you as it has me,

Kim Amburgey

Continue reading, recommended posts about the topic on this Blog:
social discomfort and dystonia


Start your Recovery Journey Today

Join the complete online recovery program for dystonia patients.