For some of us, a fear or discomfort when speaking or being observed, engaging with another or a group can become very pronounced after developing dystonia – and not just because our movement irregularities feel embarrassing – but because psychological and emotional issues are often comorbid with dystonia.
Dystonia can cause an imbalance in the emotional centres of our brain and some unwanted tendencies seem to suddenly become overwhelming – making those emotions now all-consuming for us. As a patient with dystonia, I will share what I’ve learned about the connection between dystonia and social anxiety.
Social discomfort in dystonia can show up as
A fear of being judged negatively by others.
Concern you will not perform up to your own and others’ expectations.
Little patience for others’ input if it doesn’t interest you.
Over-eagerness to contribute your thoughts.
Fear of contributing as you may mess up.
Acute concern your dystonic symptoms will be noticeable.
And of course the “after engagement playback” that goes on in your head – hyper-focusing on how you appeared or performed.
We can also have pre-social-engagement anxiety – spending a lot of time prior in fear of the event. This can cause us to become so overwhelmed, we avoid social gatherings all together unless it’s mandatory.
Please do not feel you are weak, that you somehow are responsible for these emotions
We are not weak and had no choice that this happened to us. Something occurred in our brain that has increased our anxiety and fear response and is making these emotions more prominent – it’s not a conscious choice we make.
We can, however, try to help ourselves to slowly recover a sense of normalcy – to stabilise our emotions along with our movements.
It is strongly recommended that anyone struggling seek assistance from a mental health professional. If you have no one nearby, our Virtual Clinic includes Psychologist Joyce Lutgen, who is available for appointments. She also has dystonia, so understands it from the inside-out.
“The first step every patient needs to go for is the reconnection with society. Reconnecting with the environment and the life you had before the onset of dystonia”
The above quote from Neuroscientist Joaquin Farias during a Harvard talk on dystonia emphasises how important it is for us to start engaging again with others.
One of the best ways to get your social comfort level back is to put yourself into these situations a little bit at a time – each time you do you will become desensitised to it that much more. To paraphrase Dr. Farias, “In dystonia, the brain is oversensitive and over-reactive…… we can tune-down the brain by exposure. Basically, you make the brain react and by repetition, it will naturally tune down into a normal response extinguishing the sensations produced by over-reactivity. The paradigm is simple – Being gradually and regularly exposed to triggers tunes down the response. Avoidance of exposure maintains the trigger as it is. Little by little, day by day remarkable improvements can be achieved.”
Many want to wait to recover full or almost complete function before they step back into the world. The truth is we need to step back into the world around us to enhance our recovery efforts. We may not jump into exactly what we were doing before dystonia – it may be a modified version of what we did – but it will get us out of our own head that is often filled with anxiety and sadness from feeling isolated. It will help us recognise that many of our fears of being in public are never realised and even if they are, so what? So what if you were an anxious mess and your head was shaking or your jaw dropped open, or you didn’t perform well or your eyes slammed shut? In the grand scheme of life, does it really matter? If there are people who judge you negatively, do they really matter? If you don’t feel acceptance from your friends or you are too stressed out at the workplace, maybe it’s time to consider a change to an environment that will embrace who you are today?
The likely scenario is that others who truly matter do accept you, but you have put too much pressure on yourself to look and feel as you did prior to dystonia. Self acceptance and acknowledging who we are at this moment is a process and we all have to work on it. We can find inspiration from others who have, like Maysoon Sayid or Michael Fox – who show us how to put yourself out there despite movement irregularities and to do so with grace, candor, humor, strength and fulfillment.
Allow, Accept, Change Focus, and Wait. Self-directives for social functions
Allow the Symptoms: One of the biggest triggers for an escalation of symptoms is our physical fighting or trying to restrict the spasms or tremors. Allowing the movements to occur for a short period can then allow a quieting down of those same movements. From Neuroscientist Joaquin Farias:
“As a general rule, we do not try to fight or forcefully control our spasms or tremors as it increases pain and slows recovery efforts. It can be uncomfortable getting through the day with this involuntary muscular activity, but this is often a necessary step to recovery as it allows the spasms to release to smaller spasms or tremors, getting smaller and smaller and eventually fading away. Fighting them inhibits this process.
This can be especially difficult when in public during social occasions or in the workplace, as our natural tendency is to want to control the spasms and tremors to avoid embarrassment or function in a certain way. We each do the best we can with what we feel warrants prioritization at that time, and we each also cope in the best way we can to avoid pain and discomfort.
For some people, the relaxing of spasms may trigger more intense spasms which can go on for long periods of time. If this is the case, you can allow the spasm to release but just for a minute or so, and then move your body to its most comfortable position.
Using sensory tricks is fine at any time, as there is no force. Over time as we reconnect our brain with our dystonic muscles and balance our nervous system, we will no longer need sensory tricks.”
Accept the Symptoms. It is a frustrating connection, but if you ask any person with dystonia they will tell you their symptoms can increase in direct proportion with their anxiety levels. While at the event, emotionally acknowledging that we are reacting to either the social or sensorial (lights, sounds, etc.) element, and making a conscious decision to accept this as ‘a phase I am in but working to recover from’, in essence accepting the anxiety as ‘it is what it is, for now’, can help us relax at the very event at which we are struggling. This will help to mitigate an escalation of symptoms from increasing stress levels, and at the same time help to lessen the ones we are having.
Change your focus away from the symptoms. The more we focus on our struggles, the more those same struggles will escalate. Take yourself out of your own head of “oh my gosh, I am having symptoms” to “the light display is beautiful, yes it is bright for me and I need to close my eyes occasionally, but it is rather pretty”. “What an interesting speaker, if the person sitting behind me sees my head moving about its ok, I will do the best I can to relax anyway and find value in the meeting.”
Wait for Symptom Relief. Many with dystonia can find their symptoms start to dwindle in a social setting if they ‘patiently wait it out’. After allowing, relaxing, accepting, changing focus, you will be surprised how you can then start to desensitize yourself to the event, lessening symptoms and anxiety, and that desensitization will build upon itself at each following event.
Keep living in the now, while you are recovering from dystonia for the future
Do not retreat and isolate because you are symptomatic. Although we can all have tough days where we want to relax at home for some much needed physical and emotional rest, those with dystonia have to be careful to avoid turning rest and rehab into isolation. We can already have a tendency towards depression, obsessiveness and/or anxiety – isolating can quickly turn those tendencies into serious mental health issues. It is hard work, facing our fears of feeling different, of being ‘shunned by the pack’, but it’s worth every bit of hard work to keep our mental health from deteriorating (which will also impact negatively our movement symptoms, plus other areas of our lives we may not even consider).
Continue reading, recommended posts about this topic on this Blog:
Author: Kim Amburgey
* Limitless, How Your Movements Can Heal Your Brain. Joaquin Farias, PhD here
** Psychiatric Comorbidities in Dystonia, Emerging Concepts. NCBI, PMC here
***Cognitive and Neuropsychiatric Impairment in Dystonia NCBI, PMC here
Psychological Counseling at our Virtual Clinic click here