Healing can come from many sources: individual and family therapy, intensive, supportive and cognitive behavioural psychotherapy, art therapy, music therapy, diet, nutrition, alternative and complementary therapies, yoga, acupuncture, physical therapy, and more that might be appropriate for people with Sjögren’s Syndrome. Therapy is one way of healing, or trying to heal, but it isn’t the only way. Although there is not yet a cure for Sjögren’s, the goal is to remain as healthy as possible and have peace of mind. You can find ways to get past problems and work towards peace of mind.
The concept of healing is a subjective one. What is healing to you may do nothing for someone else. The methods you choose depend to some extent on what is available to you and what resources you have, but many different healing modalities are widely accessible. Consider the broad spectrum and decide what you would be willing to do. Take a proactive approach. Things can and do get better if you work at them. Some people may use a single method, like meditation. Others prefer a variety: massage, exercise, diet , and creative activities.
We offer the following bit of advice: healing involves trying new things. Some will work, and some will not. You won’t know what will work for you until you try something. For example, spending a day at the beach staring at the waves may be healing, unless of course, you are photosensitive and the sun makes you sick. A walk in the woods listening to the birds may help you connect with nature and remember that the world is a place of beauty. It may take you out of your own problems and make you feel better. You may not know, unless you have tried it, that meditation can help you when you are anxious. Unless you have attended a stress-reduction program or a support group, you may not know whether either would benefit you. If something doesn’t work, don’t give up. Try something else. When you approach the work with a fighting spirit and a sense that you can do something to make things better, you have stared to heal.
Authenticity as Healing
One of the things about living with an invisible illness is that there is always a dilemma about how to present yourself. There is often a split between the way you present yourself and the way you feel inside. You say you are fine when you feel sick with worry, or just plain sick. You smile when you want to cry. You conform to the expectations of other people and the norms of your culture. Sometimes you do this to an extreme. You say you are fine when you are running a high fever. You go to an important meeting when it is more important for you to be home in bed, or you attend a dinner party when you are too nauseous to eat. You tell no one you are sick; you don’t want to be judged as incompetent or weak. Living in a way that is not authentic eventually takes a toll. One woman said that one of the best things about going on disability was that it allowed her to reclaim her life. If she did not feel well, she could say so. If she could not do something that day, she could postpone it until she felt well enough to get it done. “Authenticity,” she said, “was an unbelievable luxury after so many years of smiling and saying I was fine when I felt horrid. It was a relief to be able to admit it even to myself. I could stop when I needed to. Being genuine with myself enabled me to be more so with others, and I found that they were, for the most part, more understanding that I thought.”
She noted that this feeling of authenticity came only after she had announced to the world that she had an illness that was serious enough to disrupt her life. She had kept it hidden or minimized it for many years.
Letting go of old expectations is another step on the path to healing. Being able to let go is an accomplishment. It is useful not to hold on to anger or past expectations. Instead, focus on present accomplishments. Anger and disappointment are by no means necessarily illness-related; they are experiences known to everyone. Not holding on to bad experiences is also useful when you deal with lack of caring and compassion in the medical establishment. When something you wanted doesn’t work out, it helps to be able to let it go and just move on.
For many people with Sjögren’s, there is always some medical problem to deal with, and both the symptoms and the process of dealing with these problems are exhausting, frustrating, and traumatic. A chronic disease can bring nonstop stress. It is important to find ways to release it whenever possible. The goal is to maximize the stress-free intervals, and to deal with the stressful ones as expediently as possible. Sometimes, and here we are referring to any kind of ongoing stress, it feels as if healing takes place in the cracks, those stress-free intervals between one crisis and another.
Living in the slow lane can be the most difficult thing some of us ever have to do. It is an ongoing source of frustration to have to live at a slower pace. Slowing down and accepting a new pace is difficult. While some people are relieved, other continue to miss a faster-paced life. However, when you learn to live at your own pace, you learn something about being authentic. Slowing down is a goal for most people. For those with Sjögren’s, it can be a necessity.
*excerpt taken from Chapter 10 “Healing”, The Sjögren’s Syndrome Survival Guide