Support groups are so important for keeping us in touch with others experiencing the same kinds of challenges as ourselves. There are many ways to access support. Family and friends are frequently our primary support people. However, those closest to us are sometimes too close for comfort! Personal experiences within close relationships may overlook our basic need to identify with another like able-bodied person. I use the term another like able-bodied person rather than disabled person.
Those of us with any of the many forms of dystonia are sometimes significantly socially marginalized within the community and also within our family structure. This is largely because of the nature of symptoms we experience including fatigue. The cause of our symptoms is frequently misunderstood. By meeting with and speaking to others in the same boat so to speak, we are able to normalize our experiences.
There we were today, doing what so called able-bodied people do every day. Braving the elements! Some driving long distances over mountain ranges that are dangerous when wet. It is never easy to go out and about in nasty weather. Today's support group meeting was quite an accomplishment. Although five people were unable to attend, the rest of us enjoyed sharing experiences and discussing topics of importance to us.
During our meetings we telephone one person with dystonia living in Boise, USA. Today I forgot to take her telephone number with me! Our meeting just was not the same without making contact. On arriving home I went straight to the phone. We were able to spend a few brief minutes chatting about the meeting and exchanging news about family etc. It does not matter what geographical distance is involved. Communication technology allows us to support eachother from different sides of the world!
The photographs below are of some members of our small but dedicated support group.
Sue Bayliss. Cairns, Australia.
Left to right: Gail, Maureen, Althea, Karly.
Left to right. Standing
Sitting. Althea, Karly