Dystonia, chronic pain and the highly sensitive person
This is an update to a blog I wrote a while ago about a personality trait called “Highly Sensitive Person.” It often comes up as a popular topic due to the many people whose well-being is negatively impacted by various stimuli in the environment (sounds, lights, smells, crowds, etc.), as well as feeling deep emotions that are exhausting, so I wanted to share it again with some additional information.
For a long time, it has been my belief that a good number of people with dystonia (which I have lived with for almost 20 years) and other chronic health conditions have similar personality traits, one of them being “Highly Sensitive Person” or HSP. An HSP is a person having the innate trait of high sensory processing sensitivity (or innate sensitiveness as Carl Jung originally coined it). Roughly 15 to 20 percent of the population is considered HSP.
I go into more detail below, but generally speaking, an HSP has a sensitive nervous system that makes it harder to filter out stimuli (sounds, lights, smells, crowds, etc., as mentioned above), they are aware of subtleties in their surroundings, more easily overwhelmed in a highly stimulating environment, and more in tune with the feelings of others. HSPs are often great listeners, cry happy and sad tears more often than others, get overwhelmed at large gatherings, want and need to spend quiet time alone, experience deep empathy for others, and struggle with feelings of anxiety and/or depression, to name just a few. Not everyone who is an HSP shares the same attributes and experiences, so these are just a few examples. On the surface, being called “highly sensitive” could have negative connotations, but an HSP has many desirable traits.
Common traits of an HSP include great imagination, a curious mind, high intellectual abilities, creativity, conscientiousness, and compassion. They are hard workers, problem solvers, objective, and able to see the big picture. HSP’s also tend to process events in their lives deeper and more intensely than others. This is due to a biological difference in their nervous systems which often makes them intuitive, assertive, and strong willed.
On the other hand, HSP’s can take things too personally, over-analyze things, feel defensive, experience social discomfort, are easily aroused, are sensitive to subtle stimuli, shy, overwhelmingly sensitive to the moods of other people, and hold onto intense experiences and emotions. I believe that some of these attributes, especially the last one, may contribute to some of our health problems.
When we hold onto intense experiences and emotions, it becomes stored in the body (somatic memory) and overwhelms the nervous system. This keeps us in an aroused and anxious state (fight, flight, or freeze), which prevents the body from healing from physical and/or emotional trauma (please see my book, Diagnosis Dystonia: Navigating the Journey, for more on this topic). It is when we learn to let go that the body is able to find its relaxation point to allow for healing. How we “let go” is different for all of us. It is a difficult concept to grasp and put to practice, but crucial for our well-being.
In her book, The Highly Sensitive Person, Dr. Elaine Aron outlines the characteristics of an HSP and how to live more easily in our often chaotic world. One of the biggest keys for an HSP is setting boundaries and managing energy. An HSP spends the day picking up on deep feelings and moods of others, which can leave them feeling drained. Different sounds, lights, and busy environments also take a toll on an HSP. For example, a few weeks ago I had lunch in a loud, busy restaurant. I could barely hear the people at my table or follow much of what they were saying. I heard every painfully loud, sharp sound in the place. It was like I had a pinball machine in my head. I was only at the restaurant for about an hour and I was physically exhausted and dizzy afterwards, which altered the rest of my activities for the day.
There are other examples of when this happens (and it is not just sound; all other senses can be affected), but for the sake of space, imagine if two people were yelling in each of your ears while you were trying to have a conversation with someone in front of you. That is how it can feel when exposed to stimuli (noise in this case) that overwhelms the nervous system. I have even heard people say that merely listening to or seeing a car blinker (or other repetitive stimuli) can be system overload, which should put into perspective just how sensitive the nervous system is for some people.
For people with chronic pain and movement disorders, such as dystonia which I live with, noise, lights, smells, crowds, etc., and especially all of these coming at us at one time, can moderately to dramatically increase symptoms. It is very hard for people not affected by these things to understand just how much the most seemingly harmless stimuli can bother us. For example, loud noises might reverberate like nails on a chalkboard through our head. Even a normal range decibel radio or TV, or the radio/TV on while someone is talking at the same time might be too much for us to handle for very long. This is something that bothers me, sometimes to the point that I can’t concentrate and I feel the energy being sucked out of me.
HSPs also tend to ruminate, which leads to further exhaustion. The trick for an HSP is not to put a personal story to every experience. We have to learn to experience life and then let it go. The story line/meaning we give to experiences is often more painful than the experience itself because it lingers, causing a racing mind.
For example, have you ever had a conversation with someone or been to a party and then immediately afterwards or when you got home you replayed every nook and cranny of your interactions over and over, wondering if you said the right thing, didn’t offend anyone or sound stupid, didn’t allow for your sensitivities or anxiety to show, etc.? If so, you know how incredibly exhausting this can be. Please work hard to let go of what is done and over with, trust in your “performance” and move on to the next new moment.
Pay close attention to the input you allow into your life. Limit time with toxic people and be careful about the different forms of media you expose yourself to (the news itself, let alone social media, can be major system overload for an HSP). Lastly, if you are like most HSPs, you are a hard worker and demand a lot from yourself, so building in periods for rest and recovery in your day could be your saving grace. Self-care without guilt is of great importance. An HSP tends to do more for others than they do for themselves, which for probably most HSPs borders on being a “people pleaser”, leaving them to suffer the consequences. If you fit this description, please know that your worth is just as valuable as everyone to which you give so much of your time and attention. A little more loving kindness towards ourselves goes a long way in helping us better deal with all life challenges and not be so mentally and physically exhausted all the time.
Strategies for monitoring your HSP qualities that drain you:
– Identify your stressors/triggers and either eliminate or work around those stressors/triggers
– Plan ahead so your mind is calmer and better prepared
– Take retreats out in nature
– Engage in gentle exercise
– Seek out like minded people and know that you are NOT alone
– Treat yourself with compassion
– Create healthy boundaries; not rigid emotional walls
– Grounding activities
– Listen to your body and let go of guilt for taking care of yourself
– Have at least one quiet room or space to retreat in your home
– Wear noise-reducing headphones
– Wear photophobia (light sensitivity) glasses
– Schedule decompression time
– Give yourself time and space to get things done
– Limit sugar and caffeine
– Surround yourself with beauty and nature
Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and the author of 2 books: Diagnosis Dystonia: Navigating the Journey (2015) and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges (2021). He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, volunteer for the Dystonia Medical Research Foundation (DMRF) as a support group leader, and is a member and writer for Chronic Illness Bloggers Network, The Mighty, Patient Worthy, and The Wellness Universe. To learn more about Tom, get a copy of his books (also on Amazon), or schedule a free life coaching consult, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.