Dystonia Support Groups provide a place for people with dystonia to go that is outside the formal bounds of medical teams and family structure. Members of the group offer companionship and a sense of normalization for those who are newly diagnosed or may display symptoms of dystonia but remain undiagnosed or misdiagnosed. Belonging to a group breaks down social isolation by enabling all members to develop a common bond and a focus on identified goals. Help in the way of correct information, access to resources, and hope for an improved lifestyle, is all offered through support groups.
Medical teams provide initial diagnostic procedures and crisis intervention if required, followed by a treatment plan including on-going review. The process of diagnosis can be a daunting experience for many. Retelling the history of symptoms to several medical practitioners of different disciplines may become overwhelming. It is not uncommon for patients to experience some level of depression both prior to and post diagnosis.
Most people find a support group helps relieve depressive moods and sadness by providing the companionship of other people in similar situations or with the same medical diagnosis. This experience normalizes a person’s sense of self by abolishing the barriers of isolation.
Rather than thinking they are all alone in suffering, the person with dystonia discovers the treasure of empathy from others. Social isolation quickly disappears, replaced by a sense of belonging, identification and purpose.
Belonging to a support group, being able to identify with other members and focusing on goals, empowers people with dystonia to change from feeling helpless to becoming informed, resourceful and productive in their everyday lives. Distances between support groups may prevent many people from attending. However, telephone contact and emailing are ways for people to have frequent contact with eachother. There are also on-line support groups able to provide companionship and information.
If you would like to say something about your experience of contact with a support group, press on ‘comments’ below and leave a short message. Meanwhile, check out the links below on Cairns and Australia.
Sue Bayliss. Cairns, Australia.