Perspective on pain and suffering – Is it all in our head? Powerful words from a fellow patient

April 10, 2023

As many of you know, I have lived with a painful neurological movement disorder called dystonia for the past 22 years. Utilizing different treatments, therapies, extensive self-care and plenty of trial and error, I have learned to better manage my symptoms.

I still deal with involuntary muscle contractions, pain, balance issues, fatigue, and other symptoms, but they are not as intense as they used to be when I could barely sit or stand for more than ten minutes because of blinding pain from my head locking towards my right shoulder at a 45-degree angle.

Knowing how brutal dystonia and pain can be, and the impact it can have on us emotionally and socially, I dedicate my life to helping others through writing, speaking, and using my skills as a life coach to work one-on-one with those who reach out to me for guidance.

While the physical symptoms are very important, the emotional component is often neglected, especially by our medical community. To help fill this void, I write and speak extensively about the mind-body connection and the importance of honestly expressing our emotions, as well as being realistic about the challenges we face in coming to terms with our pain and suffering.

I have a client who does this beautifully and I would like to share some of his words with you. He suffers from a very painful connective tissue disorder called Ehlers Danlos Syndrome, along with dystonia, non-epileptic seizures, small fiber neuropathy, post-orthostatic tachycardia syndrome (POTS), and other forms of dysautonomia. At times he has questioned the psychological components of his issues and has openly discussed with me the idea of his pain and suffering being just all in his head.

Through some recent discussions and self-reflection, this is what he wrote to me:

I think that I am slowly learning lessons about how wonky my body and brain are, and what I need to do to stay on even footing.

If anything is actually psychological, I’m being very careful about dealing with things. Creating boundaries, not forcing myself to do things I can’t or don’t want to do, making sure that positivity is key because negative energy can really affect me.

I’m realizing I’m here to be positive, to help others be positive, and to walk away from those who are not – and not out of hatred or fear. It’s about realizing that we all have our own versions of the world and if we see it as negative, the negativity and the people who feed on it will find us. Therefore, at least for me, my body has been telling me that it needs positivity to function. So, I’m being positive.

All in all that makes it sound like my illness is psychological. It’s not. It’s just how my body created itself based on what I needed to concentrate on most. If I was well, I would still be a desk jockey working in insurance. Being sick has inadvertently given me the opportunity to reflect about myself, my motives, other people’s motives, etc.

And I know that all sounds like I’ve been eating mushrooms. I’m just really embracing the best of myself and taking the bad stuff – pain, sadness, whatever, and looking at those things as catalysts for positive growth. I personally wish I didn’t have to live a life of pain before I started to understand. But, I guess that’s what I chose this life to be.

Unlike many of us, to our detriment, rather than resist and get angry about the things that are happening to his body, he is very introspective and curious and interested in what’s going on, and how he can use it to learn and grow as a person. He strives to live the best life possible for himself and others, despite any limitations he might have.

He is a perfect example of Post Traumatic Growth (PTG), a term coined by professors at University of North Carolina at Charlotte in 1995, but the theory has been around for centuries. PTG refers to people who become stronger and create a more meaningful life in the wake of tragedy or trauma. I wrote another blog about this topic in more detail. If you want to read it, please click here.

None of what I am sharing is meant to suggest that your pain or other symptoms are in your head. Quite the contrary, but perception and attitude can make a big difference in how we cope. Research has demonstrated that people who maintain a positive outlook, even when feeling physically unwell, respond much better to tough times. It enables us to reduce the harmful health effects of stress on our body. I cover stress, PTG, coping, and many related topics in greater detail in my two books, Diagnosis Dystonia: Navigating the Journey and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges.

I hope you were inspired by my client’s powerful words. As this individual demonstrates, I believe more than ever that the way we respond to life events (health challenges or otherwise) determines how well we manage and cope with tough times and find meaning in our lives.


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 and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges. 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 volunteer writer for Chronic Illness Bloggers NetworkThe Mighty, and Patient Worthy. To learn more about Tom, get a copy of his books (also on Amazon), or schedule a free life coaching consult, visit Follow him on Twitter @Dystoniabook1 and Instagram.










6 responses to “Perspective on pain and suffering – Is it all in our head? Powerful words from a fellow patient”

  1. Tina Heselgrove says:

    Hi I have suffered dystonia for past 5yrs midges sydrome I recently visited my gp telling him about pains in my legs and neck basically everywhere. Asked him if could be linked to my dystonia? I was shocked at his reply he said no as dystonia is not painful

  2. Vic Shumate says:

    As always, very informative Tom! Thanks for
    Sharing! I constantly think positive and stretch, stretch and stretch the effected neck muscles, along with magnesium oil and Theraworx and of course Botox! But the positive thinking is
    a MUST for me! If I can’t talk positive, I just whisper a prayer to get me through! Just wish my wife would less of a worrier lol …..great article!

    • Tom Seaman says:

      Thank you for your very kind words Vic, and for also sharing what you do to keep your body and mind as healthy as possible. I do much of the same and like you, without the mindset portion, I am doomed. Thanks again!

      • Tom Seaman says:

        I am shocked as well Tina! This goes to show how little these doctors know and why we need to keep educating them. After so many years with dystonia getting more exposure, you would think by now they would understand better. I’m sorry. It’s shameful.

  3. RJG says:

    You and your client, Tom, are to be Commended! I first experienced the Power of Positivity when my mother took ill 35yrs ago this Easter. Her Confidence in Self, wonderful and carefree attitude of Healing, suc as being able to sing during ambulance rides and to others while waiting in sitting areas for 14 weeks of radiation treatments for brain cancer, was the Greatest last gift she could give me, as I said my last goodbye to her, then proceeded to follow her on the same radiation table, with her same medical team, to treat my breast cancer. I have survived breast cancer twice, and find it much harder now staying as bright and upbeat as I did back then, as I deal now with uncontrollable muscle and leg movements, through my dystonia. I encourage people to read Tom’s books and visit his website as I have done, for the abundance of understanding, insight and tools provided are a constant support to me! We are Fortunate, Tom, to have your Inspiration and from others, such as your client expressed, to help us remember that there are healthy, constructive and doable ways to make each day bright. Staying positive takes effort, too, but starting with Gratitude for those available to us such as yourselves, is highly valuable! Continue doing what you do, Tom, for IT MATTERS!!! Thank you!

    • Tom Seaman says:

      Thank you so much Ruth!! You shared in such a beautiful way some very powerful and beautiful experiences that I hope others will read and take to heart. Your passion for living, as it was with your mother, is infectious! Thank you!!

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