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Visible and invisible symptoms of dystonia: overcoming self-consciousness and the need for validation

One of the most common sources of grief, frustration and isolation for people suffering from dystonia is the question of visibility

Some of those affected have very visible symptoms: Diana’s cervical dystonia that causes her head to be permanently turned to the right side, for instance, or Jane’s blepharospasm that prevents the eyelids from opening. 

Externally invisible symptoms can also be present, either alone or together with visible ones. Dave’s jaw and upper cervical vertebrae, for example, are pulled and twisted by the muscles in his head and neck every time he walks. In my own case, the muscles that control my jaw used to contract in a really painful spasm every time I spoke, chewed, walked or focused my eyes on a screen. 

Both visible and invisible symptoms often cause formidable challenges for those affected. 

Individuals who suffer from visible symptoms can often become very self-conscious, feeling like others are staring at them, judging them, pitying them or generally being uncomfortable in their presence. This can lead them to avoid social contact and deepen their distress. 

Jennifer’s neck, for example, starts shaking uncontrollably every time she perceives that another human might be even remotely close to her. Anna’s eyelids shut down whenever she is not fully comfortable with an interpersonal interaction. 

Those who are affected by invisible symptoms, or focal and functional symptoms that only show up in certain circumstances, on the other hand, often feel misunderstood and become exhausted trying to explain their limitations to others. “You look fine to me” is one of the phrases that haunt them and leave them feeling alone in the world.  

Dave, for instance, had a hard time explaining to his coach that despite looking perfectly fine he was not, in fact, able to run around the basketball court and referee the way he used to. I had a hard time, back in the day, explaining to my own employer that even though he couldn’t see it, my eyes and face were spasming uncontrollably whenever I looked at my computer screen. 

Another thing that causes much confusion for friends, family and co-workers of people affected by dystonia is that the symptoms are often task-specific: Claudia, for example, can walk very easily within her apartment, but once she is out on the street her eyes and legs seem to stop coordinating with each other and she can barely put one step in front of the next. 

To the untrained observer, this might look like an indication that Claudia is crazy, or stubborn, or stupidly refusing to do something that she is perfectly capable of doing. Nothing could be further from the truth. 

What is happening, in truth, is that different “softwares” within Claudia’s brain are being triggered by different tasks and different environments. The “walk-at-home software” is pretty functional, but the “walk-in-the-street software” isn’t. 

Whether one’s symptoms are visible or invisible, always present or task-specific, there is a way out.The video on the Eight Steps of the Hope for Dystonia Recovery Roadmap details the most comprehensive and transformative dystonia recovery program out there and charts the path healing in detail. Highly recommended. 

While one works on one’s recovery, it is important to deal head-on with the challenges posed by visible and invisible symptoms. This is crucial because social support can greatly hinder or promote one’s healing. Here are a few tips on how to do so: 

If you are dealing with visible symptoms:

  1. Train yourself little by little to be comfortable in other people’s presence. Start with a loved one and allow yourself to be seen while experiencing spasms, shaking or involuntary movements, then slowly move on to people you are less familiar with once you build a sense of ease.

  2. Remember: trying to control your symptoms excessively by tensing up and contracting more makes the symptoms worse!

  3. The more casual and nonchalant you can be about the symptoms, the easier it will be for others to mirror ease back to you.

If you are dealing with invisible symptoms: 

  1. Work on assertive communication. Be courageous and express clearly what you need and what your boundaries are. Don’t expect others to guess what you are going through.

  2. Validate your own experience. Speak to yourself kindly and use statements like “I know what you are going through. I see you and I know it’s tough. I love you and I care”.

  3. Notice when you are looking for other people’s validation, as if their recognition made your suffering “real”. Remind yourself that it is real even if it can’t be seen, and practice self-compassion statements such as the ones in point (2). 

There is obviously much more to be said about this, and of course some of the tips in this article require some work of personal healing and growth - a big focus of Hope for Dystonia sessions. This is, nonetheless, a helpful start. 

In hopes of providing inspiration, here are some pics of myself when I was dealing with some of the worst of dystonia. As I mentioned, most of my symptoms were not visible, but some were, at least some of the time. Check out the picture in my passport below: it was impossible for me to avoid spasming in that way despite multiple attempts and lots of effort! 

The anatomical changes in my cranium, seen below, were the result of lots of hard work. These are not technically symptoms of dystonia, but cranial asymmetry can contribute to instability of the jaw and upper cervical vertebrae, therefore leading to neurological symptoms (read “What Causes Dystonia, Really?”). Healing the nervous system allowed me to use my muscles to shape the maxilla and the cranium differently. Some of the change you see is also simply a change in muscle tone. 

Here are some more pics from back in the day: notice the asymmetrical sweating (my autonomic nervous system was out of whack!), the big open bite that contributed so greatly to my dystonia, and more facial spasms. 

What you can’t see in these pictures is all the time I spent in bed, angry, depressed and in excruciating pain. You can’t feel the debilitating tension that was gripping the entirety of the right side of my body (hemidystonia), or my inability to connect to the left. You can’t feel the pain of my right condyle pushing into the right temporomandibular joint (oromandibular dystonia) and squeezing my trigeminal nerve into pain so intense it made me want to die (trigeminal neuralgia). 

Like most, I had a combination of visible and invisible symptoms. I went through a really, really rough time feeling alone, misunderstood and desperate. 

And yet, here I am, thriving: I speak for hours at a time, hike in the mountains and spend entire days kayaking. I got my life back and so can you

Here’s a picture of our dog Bubu on the kayak with me. Are you, too, ready to turn your life around

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