Isolating ourselves to feel less alone
This may sound like a strange title so let me explain. I live with a health condition called dystonia, which is a neurological movement disorder. It is the third most common movement disorder after Parkinson’s disease and Essential tremor. It is not a well-known condition, and the symptoms and treatments and life many of us have to live to manage this disorder can be difficult to understand. This can make us feel uncomfortable around other people. Even if we are in a huge crowd or amongst our closest friends, we can sometimes feel completely alone because no one “gets us.”
So, going back to the title of this article, sometimes it’s easier for us to avoid other people, or isolate ourselves, to feel less alone. Sometimes just being with ourselves, as depressing as it can be, is sometimes less depressing than being around others because it stings to not know how to fit in. I don’t really feel this way too much anymore, but I did for many years and know it is common for many other people, so I wanted to write this to acknowledge you and what you experience. I know how tough it can be and will share some ideas at the end for how I worked through this, much of which I share in far more detail in my two books, Diagnosis Dystonia: Navigating the Journey and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges.
For several years in the beginning of my journey with dystonia in 2001 where my symptoms were profound, people couldn’t grasp what was happening to my body. Nor could they grasp the nature of a chronic condition. We are all used to getting sick or injured and having an expected time for recovery. That doesn’t happen when you have something chronic, AND symptoms are often different day to day, so it may appear we are getting better when the next day knocks us back a couple steps. Because of this, I was judged harshly by some people so I didn’t like being around anyone. To make myself feel better, I purposely isolated myself because, in an ironic way like the title of this article, I felt more alone with people because they didn’t understand and it was exhausting trying to explain it and why I wasn’t able to keep up with them.
We are often told to avoid isolation. I often say this too, but usually, it is in the context of trying to reduce the potential for more anxiety and/or depression if that is what a person is experiencing. It can spiral downwards very quickly. In other words, sometimes we practice avoidance because of our anxiety and fears, and sometimes we feel depressed and have no interest in doing anything. In these situations, isolation can often make anxiety and depression worse, so we must be careful (please see my books for more on these topics).
While it is true that when we lose connection with others it can intensify anxiety, depression, loneliness, and/or fear, what do we do when that seems like the better option if being around others who are maybe not so accepting or understanding of what we are going through creates more depression and loneliness and fear and perhaps even anger?
Truth be told, I don’t really have the answer. I think the answer is different for all of us. For me, I had to find little things to do every single day to feel part of the world again., BUT ON MY TERMS. I had isolated for so long (over 5 years) that I forgot how quickly the world moved. I had to learn to be comfortable driving in my car again, going to the grocery store, having conversations with friends, but especially with strangers and re-learning how to meet new people. All of this was terrifying to me which is why I took baby steps where I put myself just a little bit out of my comfort zone so those things eventually became comfortable. The key was doing this consistently so I could extend beyond each new comfort zone I created.
Something else that was and still is incredibly important for me is to set boundaries and choose who it is that I want to spend my time. My time and my life are incredibly precious to me. I will not sacrifice it for people and things that rob me of my energy. I only have a certain number of functional hours in the day, and I choose to spend them as wisely as possible.
Every morning, I think of things I want to do that day that will be fun and fulfilling, and I schedule everything around it. For me it is usually some kind of a creative project. Nothing major. Just something that makes me feel like I am feeding that desire inside of me to accomplish something that I find meaningful. The more I do, the more value I add to my life, the more I value my life, and the more interested I become in new things. This then makes it easier for me to maintain my boundaries to give that precious time to myself and the most important people in my life. I encourage you to try to do the same, and also evaluate the level of isolation you choose and the reasons for which you choose it to make sure it is serving your best needs.
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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, 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 www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.
I am in a long distance relationship with a wonderful woman who has dystonia. She has, I believe, done a pretty fantastic job of explaining to me.
We are in love, yet I struggle from time to time, with understanding how dystonia affects her daily life, and how it affects our relationship.
Can you recommend a book(s) for me to read to help me better understand what she is going thru, and how I can help, or at least, how I can understand how it effects our relationship?
Thank you in advance
Hi Doug- Thanks for your message and sharing that about your girlfriend who has dystonia. I have to say first off that I admire you for wanting to learn more. This is not the case for a lot of relationships. The book I would of course recommend is mine, Diagnosis Dystonia: Navigating the Journey (www.diagnosisdystonia.com). It is the most comprehensive book about dystonia, covering everything from A-Z about this condition. I wrote it for not just patients, but loved ones and doctors as well. One of the main reasons being that there is so little information available that truly goes into the depths of living with dystonia and other chronic health conditions. If have any questions about it, please let me know and all the best to you and your girlfriend.
Dear Tom,
I am fortunate in that I don’t suffer from dystonia although I do struggle with anxiety and depression.
Recently I started looking after a client with generalised dystonia that includes laryngeal and diaphragmatic spasms that stop her breathing. I often have to resuscitate her 2-3 times a day as she stops breathing and loses consciousness. These episodes of dystonic storms are obviously traumatic for her and distressing for me to witness and save her life over and over again. As an RN I can manage but her family and significant other are running out of ways to cope. Do you have any literature or advice that might help them cope and me to be the best carer I can be? Her suffering has put my own troubles in perspective and I feel like I am meant to help improve her quality of life. Thank you for your time.
Hi Clare. Thank you for sharing that about your client. How wonderful it is for her to have you. The dystonic storms sound rather severe and quote scary. Not too many people know what they are and what to do about them. The first thing that came to mind were my two books that you can find at this link- https://www.tomseamancoaching.com/order-books/. They also might help you and her family cope better with her and with some of your own troubles you mentioned. I would also contact the DMRF and other dystonia orgs and societies for additional supportive material. Please also peruse my website for other blogs, articles, and podcasts. I would also look into some coaching sessions with me, for either your client, her family, or yourself. Please also check out this link that is about a woman who helps people with chronic illness- Rosalind Joffe http://www.cicoach.com She is mainly in the business of helping people with chronic illness work, but her material is very insightful and supportive in general about living with life altering health issues.
Very encouraging words Tom! You’re a blessing to all!
Thank you very much!
Thank you Tom for sharing your experience and feeling. I know what means every single word you sad. I thank God for people like you who although in a difficult situation find a way to make life better. God bless you.
Those are very kind words. Thank you!
Tom, you hit the nail on the head. Too many people don’t have any idea that their words and actions towards me can suck the little energy I have right out of me. Confrontations make my symptoms worse, and they don’t seem to understand that this is my reality. Thank you for helping me realize that I need to be careful who I let into my energy field.
I can very much understand what you are experiencing and it isn’t easy. We need to make sure we pick the right people to be in our lives, and in what way, so as to protect that precious time and energy.
Great advice, Tom! I too found that doing something creative everyday pleases me and gives my life value. But it is also fun to be creative with friends, who have the same interests. For me it is doing pottery and painting. I can often forget my condition while immersed in my art, which is such a relief 😊
Thank you and that’s great to hear that you have also found some creative outlets to get some relief. I think those distractions and putting our focus elsewhere can make a big difference.