If you live with pain or other chronic conditions and have anxiety and fear, it is not your fault
Having lived with a life changing health condition called dystonia since 2001, I have learned some really tough lessons about myself, other people, and life in general. When it comes to dystonia itself, it has been decades of trial and error to deal with all of the unknowns about the distress my body is under every day. For anyone who has this condition, the “not knowing how we will feel from hour to hour or day to day” is a huge emotional burden that is very difficult to ignore. The physical symptoms are forever present and/or on our mind almost constantly because we never know when the severe symptoms will rear their ugly head and completely turn our day around. It is an incredibly uneasy feeling and one that keeps us on edge.
Early on when I was at my most severe, I mainly primarily focused on treating the physical symptoms. But I also went through many intense emotions including depression, anger, deep loss and sadness, the stages of grief that still cycle on and off even to this day decades later, frustration, envy, resentment… you name it. I lost almost all physical abilities for many years, so these emotions are a natural part of the process of coming to terms with such a dramatic life change. For me it was especially traumatic having been an extremely active person that lives a very different life now.
If you are battling these feelings, don’t beat yourself up. It is totally normal. Emotions play a massive role in our well-being. When I began to learn how to address that side of myself in addition to the physical, I saw greater overall improvement. I had to work on regaining a sense of “self” to feel emotionally grounded and not live a life that was run by my physical symptoms of pain and uncontrollable muscle spasms in my neck and back that involuntarily moves my head around. Midway through my 25 years living with dystonia is when I shifted much of my focus on my mind and the mind/body connection, which is what I want to discuss in this blog.
In addition to writing blogs, I also send out a bi-weekly newsletter called Weekly Words of Wellness. You can click here to read about the things that I cover. Recently, I have been putting an emphasis on the mind/body connection. In a recent issue I discussed Somatic Symptom Disorder (SSD) which will be the focus of this blog.
Preceding that newsletter, I shared information from Dr. Alan Gordon about how to react differently to pain to reduce its intensity based on neuroplastic changes that take place when you live with something chronic. You can view that newsletter by clicking here. The newsletter prior to that I discussed Interoceptive Anxiety (click here to view), which is a type of anxiety where bodily sensations are misinterpreted as threatening, leading to avoidance, fear, anxiety and panic. All of these topics, including SSD, are linked together.
So let’s jump into Somatic Symptom Disorder (SSD), which is prevalent in some people with my health condition called dystonia, as well as many other health conditions. Somatic Symptom Disorder is also a stand-alone condition. SSD manifests as an intense preoccupation with physical symptoms such as pain or fatigue, accompanied by an emotional response to these symptoms. This emotional response is what keeps the brain locked in a cycle of pain and fear. The image below illustrates how this can look.
Retrieved from Auckland Home Birth Association
https://ahba.org.nz/articles/alternatives-to-waterbirth/
If you have chronic pain or other chronic issues and this pattern describes you, it is not your fault. Over time, individuals living with pain can develop neural pathways that keep them on high alert for pain and other uncomfortable sensations. It is the brain’s way of protecting us but can become maladaptive over time.
The primary issue is our interpretation and emotional reaction to physical symptoms rather than the specific symptoms themselves that perpetuate a cycle of pain (anger, hatred, bitterness, resentment, etc.). It is imperative that we become more aware of our emotional reaction to painful stimuli and change these negative reactions because they do indeed cause more pain and fear of pain, thus keeping us on high alert, similar to what one could observe in the fight/flight behavior of squirrels.
When we consistently fear pain and perceive uncomfortable sensations as dangerous, this turns on the “worry alarm bell” in the brain too often. It keeps us in hyper-alert mode where we find it hard to rest and relax and be at ease. When this loop is kept alive for a long time it can be hard to break the pattern. Dr. Alan Gordon authored a book called The Way Out that provides more details on this topic. I also highly recommend The Pain Habit by Drew Coverdale. Click here to see an article about a real life experience where I was able to avoid an overt emotional reaction to an injury and how I worked through it. It is called, My test to find relief in the midst of a serious pain episode.
Conditions such as dystonia, pain, fibromyalgia and many others may be associated with SSD. In my health coaching practice, this maladaptive coping mechanism is often observed. When this arises, I work with clients using strategies for emotional regulation in addition to addressing physical symptoms. Emotional regulation is a huge key to symptom reduction/elimination and must not be neglected.
SSD doesn’t mean our pain is fake or we are making it up. It is very real. It means that our brain has been in a state of hyperarousal for so long that the wiring for pain, fear, adrenaline, anxiety, worry, panic, and more pain has become stronger… leading to a lower pain tolerance and threshold, and fear of bodily sensations that leads to higher anxiety that impacts all areas of our lives. For those of you who have been accused of “making it up” or told to “just get over it,” you might want to share this information with those perpetrators because there is a physiological basis for all of it.
Important Considerations:
- SSD symptoms are real. Individuals with SSD genuinely experience physical discomfort and distress.
- The main problem is excessive focus and worry about the symptoms.
- Seeking professional help is crucial for persistent and distressing physical symptoms, and over-worrying and fear.
SSD Therapies:
- Cognitive Behavioral Therapy (CBT)
- Pain Reprocessing Therapy
- Somatic tracking (somatic experiencing)
- Trauma Release Therapy (TRE)
- Emotional freedom technique (EFT- tapping)
- Meditation, prayer, breathing techniques, visualization, mindfulness practice, singing, humming, grounding techniques such as walking barefoot in grass.
- Developing a strong therapeutic relationship with a coach or therapist.
If you have been following recent newsletters and blogs, my focus has been on these mind/body topics due to an increasing number of people I see dealing with higher levels of anxiety, fear, and worry which can create physical health problems or worsen existing physical health problems. Strong negative emotions linked to behavior changes can also strain relationships, which I have noticed becoming more of a pattern.
Isolation and depression are also more prominent because of a lack of understanding from others. We want support, but sometimes being alone is a lot easier for many of us, but isolation can cause a whole new set of problems for many people. I don’t want to jump into that area right now, but feel free to check out this blog I wrote about this topic called, Isolating ourselves to feel less alone.
For more information on the connection between emotional and physical symptoms, please refer to my books: Diagnosis Dystonia: Navigating the Journey and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges. Additionally, consider setting up a free coaching consultation with me by clicking here to discuss individualized support in this area.
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Tom Seaman has lived with dystonia since 2001 and devotes his life to worldwide education and awareness for this life changing disorder. He is the author of 2 books: Diagnosis Dystonia: Navigating the Journey, and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges, as well as hundreds of articles on dystonia, pain, and emotional health topics. Tom is a Certified Professional Life Coach in the area of health and wellness, working directly with people to help them manage their physical, emotional, social, and vocational challenges. He is also a motivational speaker and chronic pain and dystonia awareness advocate. Tom is also a volunteer writer for Chronic Illness Bloggers Network, The Mighty, and Patient Worthy. To learn more about Tom, get a copy of his books, or schedule a free life coaching consult, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.
Tom, you have nailed it!!! Especially the brain being on constant OVERDRIVE. I work on that everyday and for me it is the hardest part of my CD. I have very little pain. Thank goodness sleeping is no issue except I have to always sleep on my back if on my side I spasm.
Again thank you for all you do for us!!!
Thanks very much Suzanne. You are not alone with the brain being in overdrive. It can even happen when we have low pain but other symptoms. Anything that the brain deems scary or threatening or “not normal” can ramp up the adrenaline. I have a similar issue when I lie down to rest or sleep. Any pressure on my head causes strong neck contractions and head pulling, no matter what side of my head. It has been happening on and off the past 25 years, but I did things to make it better where lying down was my most comfortable position, but the last 3 years it started up again and I can’t seem to figure out what to do about it. I am being patient with it, as I have combated it before, so I hope to again. Wishing you all the best!