The Impact of Chronic Pain on Social Life
Chronic pain has a sinister way of impacting practically every aspect of our lives. One major area is our social life. Since chronic pain is often misunderstood by others and the physical demand on us so great, maintaining relationships and social connections is very challenging. Having lived with chronic pain from dystonia for nearly 20 years, I know firsthand. It completely changed my life.
I went from being an entrepreneur, pursuing a master’s degree in counselling, playing sports, travelling, and enjoying an active social life, to severe disability where I could barely function. I was so scared, angry, and ashamed that I retreated from the world. I lost almost all connection with people, which was devastating. I didn’t know who I was anymore or where I fit in. I felt like a fish out of water and became afraid of the world I was once so much a part of. Depression and anxiety took over my life.
After suffering like this for about 10 years, I found a variety of things to better manage my physical dystonia symptoms, as well as the mental/emotional aspects that also haunted me. I then became certified as a professional life coach to help others address the complexities of living with chronic illness. I then authored the book, Diagnosis Dystonia: Navigating the Journey, which provides tools and strategies for managing the many challenges that dystonia and other chronic health conditions present.
I mention these accomplishments to illustrate how someone can go from deep despair to a life of meaning and purpose. Although, it wasn’t overnight and I still have plenty of work to do. It took time and a lot of perseverance to get comfortable taking part in the world again after living in painful isolation for so many years. It changed me. Dystonia made me feel like a square peg in a round hole, but if I wanted any kind of life, I had to face my fears and reconnect with people. I took baby steps every day and built on them. After some awkward situations and my fair share of panic attacks, I eventually became more at ease, so much so that I now speak to groups about dystonia and other life challenges. I never gave up, which is my message to you.
The reality of dystonia, pain, and isolation
My story aside, the reality is that pain, muscle spasms, awkward appearance, fatigue, and other symptoms make it difficult to keep up with the activities and schedules of friends and family. Because symptoms are unpredictable, it is hard to make plans or keep social commitments. Others may not fully grasp what it is like to live with chronic pain and why we are like this. They may expect us to ‘get better’ or ‘get over it’, as if it were something like the flu or a broken ankle where there is an expected time of recovery. This misunderstanding can cause friction and tension. People may not know what to say or do, causing them to back out of our lives.
However, relationships are a two-way street and we may do the same. When our emotional needs are not met, we may be the ones who withdraw from others. I felt very misunderstood, so I wanted to be alone. It seemed easier. I was also extremely depressed about the life I lost and thus, unmotivated to keep in touch. I needed time to grieve, but I took it further than I should. At the time, I didn’t have the tools to cope. I soon didn’t care enough about myself to seek help and didn’t want people pushing me to get help, so I remained silent about my internal pain and avoided people as much as possible. Looking back, this was a big mistake. It only made me feel worse and took much more effort to overcome my grief. I was caught up in a self-perpetuating cycle of loneliness, stress, pain, depression, isolation.
Health consequences of isolation
Many of us are self-conscious about our symptoms, making it difficult to feel positive and at ease in social situations. We may see ourselves as inadequate or irrelevant to the world. This is not true, but it can feel this way which can lead to isolation. The problem is that when we lose connection with others it can intensify depression, hopelessness, fear, and anger, and these emotions fuel the chemical factory in the brain that may worsen our pain. Isolation and loneliness have also been correlated with delayed healing times, high blood pressure, irritability, distrust, hostility, poor sleep quality, higher mortality rates in older adults, and compromised learning and memory.
As tough as it can be, it is important to take good care of ourselves and to know that our value and worth has not diminished. I didn’t do a very good job at this, as I self-medicated for years with food and alcohol, resulting in a weight gain of 150 pounds. Thankfully, I was able to change my destructive habits and have since lost all the weight. If you have lost contact with others, I strongly encourage you to re-connect or connect with new people who are understanding of your situation.
Health benefits of social connection
There are many health benefits of socialization that researchers are uncovering every day. Social connections help us better deal with stress and lower our risk for anxiety, depression, and self-destructive behavior. It increases self-esteem, confidence, trust, courage, and a sense of value and purpose. Believe it or not, greater social connections are also linked to lower cholesterol and decreased risk of cancer, cardiovascular disease, and hypertension. Being around others also keeps the mind sharper and increases vitality. It also gives us a sense of belonging. We smile and laugh more, which increases the “feel good” hormones in the brain like endorphin and serotonin, which help reduce pain.
Strategies for building and maintaining social connections
When engaging the world, it is important to do what is most comfortable and within the boundaries of our symptoms. Surround yourself with people who lift you up, believe in you and your dreams, and give you a spark. Perhaps join a group where you can connect with people who have the same interests – clubs, meet-up groups, and support groups. Make friends with people who have similar challenges, but also try to be around people who are different, so you can gradually expand your comfort zone. According to research, for mild and moderate depression, social interaction is more effective at alleviating symptoms than antidepressants.
It is important to reach out and maintain contact because we can lose perspective when we are alone. Isolation can confuse us into thinking we are an outcast. Support groups, whether online or in person, are very helpful. They provide an opportunity to receive and give support to people who understand us. Sharing our feelings is very helpful, as is helping others. Helping others is a big part of our own healing. It is also a way to break isolation. Further, when we are in a helping environment, we focus more on the needs of others, so there is less attention on our painful thoughts and feelings. When I feel down, I find ways to help others. It always brings me out of darkness. Writing an article like this does the same thing. The chance that it might reach at least one person whose life will be impacted in a positive way gives meaning and purpose to my life.
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 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.
This has been a struggle..when my symptoms act up I’d rather just stay home!
It is especially tough when symptoms are acting up and I will often do the same. I give into it and let it win. Giving in and not fighting it is often very helpful. There are occasions when I will still go out and sometimes it helps me feel better, especially when with good friends and lots of laughs.
Great article, and just typical you Tom. Always concerned and giving of yourself and I have said it a thousand times you have such a massive compassion for people. I am honoured to call you a friend, I have a wonderful family, but even then I needed something and your book changed my live (actually our lives). My husband, my Neurologist and having your friendship has been a blessing. Take care my friend.
Thank you Vye. I don’t say it enough, but you offer so much care and kindness to me for which I am very grateful. Thank you!
Thank you for this article. I have fibromyalgia and chronic fatigue. I’m on social security disability (It’s been about 13 yrs.) I used to have a professional job, tons of friends, and a huge social life. Now I have none of these things and it is very lonely and it’s easy to feel useless. Recently I’ve found a church and began Pilates twice weekly. I can’t always make service or lessons bc of my illnesses but it’s a start. The hardest thing is trying to make plans bc I never know (literally) hour to hour what my illnesses have in store for me.
I know just what you mean about not knowing from hour to hour how things will be, making it so hard to make plans. But, the fact that you have joined a church and are doing Pilates is a huge step, even if you don’t always go. That’s okay. Not even people without our health challenges are able to make it to everything and keep their plans. It is different for us for different reasons, but you are putting yourself out there which is the key thing. When you are able to participate, acknowledge yourself and have a ball!
I, too, have discovered that helping others gives me such pleasure that I don’t even feel my pain at that time. I also pray a lot and even give up my sufferings to God as Jesus sacrificed for us. I’m not perfect by any means…just this week, while on vacation, I started getting angry at people staring at me…I have a soft collar I wear out so I last longer in social activities. I prayed for the anger to leave and reminded myself that people are curious or empathize with me and I was then able to smile back at them. This seemed to relax them, too, as they smiled back. Accepting my new self took awhile and I’m a happier person. Thanks again, Tom, for the learning tools and comfort.
There was a study done where they measured serotonin levels in people who did things for others. Levels of serotonin increased in people doing the good deed and in those receiving it. Most interesting to me is that serotonin levels increased in those who were merely observing the good deed. This is so telling for me because it just goes to show how important it is (for so many reason beyond just increasing serotonin levels) to be in service to others.
Thank you, Tom, for being so open about your Dystonia. I have Dystonia and Cerebral Palsy, plus a number of other disabling conditions. I was born with Cerebral Palsy. The Dystonia appeared when I was in my late 20’s or so. It affects the left side of my body, especially my left hand, which is clenched into a fist and hurts all the time.
I have lived in a skilled nursing facility for the past 7 years or so because I cannot walk anymore or take care of myself like I used to. Sometimes I feel so isolated and alone, but then I turn to God in prayer, and I don’t feel so lonely anymore….Tara S.
Hi Tara- Thank you very much for sharing all of that. You have been through so much and to have such a great attitude is humbling. I am grateful for your uplifting words.
Thank you Tom. Every little bit of understanding and encouragement helps. I’ve just been celebrating my 70th birthday, realising what a wonderful family I have and what a great bunch of people I call friends. My symptoms come and go a lot so I do go up and down, but never down for long! Bless you for being there!
Collette, you have such a wonderful attitude which is tough when we ride a roller coaster ride of symptoms. Happy Birthday!!
Thank you for encouragement to keep going. I personally do feel isolated, especially in public.
I know that feeling all to well and it is tough. When I was starting to get myself back out there, I made a point of doing something in public every day, even if to just drive around a little. Driving also caused anxiety so I wanted to get over that and knew I had to drive in order to do that. I would sometimes also go into a store where there were people even if I didn’t really need something, and just get one thing and leave. Each day I kept building on how much I did and how much time I spent doing things so I would become acclimated and more comfortable around others. I soon realized that there were a lot of people like me who were also uncomfortable and feeling isolated for a variety of different reasons. This made me feel less alone and isolated.
This is a great idea. Just to start driving around a little. Having FMS/CFS I feel incredibly lonely. I got so used to staying home that if I HAD to go anywhere, I would stand in the hallway with my keys and purse in hand and just stare at my front door. I began having anxiety attacks from that alone. I don’t do that anymore (I worked with my doctor) but I still rarely leave home and feel very lonely. I want the professional job I used to have, the wide circle of friends, the active social life…but that’s not who I am anymore. And even after 13 yrs of these illnesses I still can’t cope with that very well. Loneliness is miserable.
Those baby steps are giant leaps when it comes to the things we live with that are so challenging. It’s interesting you mentioned that about standing in the hallway with your keys. I used to sit in my car debating whether to leave the driveway. Then there were times I would get to where I was going and sitting in the car wondering if I should go in. Then if I went in, how long would I last…. What I noticed is that the further I got each time, the more comfortable it all became. This is not to sound indifferent, but a big part of me stopped caring so much about how I felt or what others thought, and I just did what I wanted to do. The less I cared, the more at ease I became and the less lonely I was because my guard was down which let more people into my life.