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, traveling, and enjoying an active social life, to living with 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 outcasts. 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.