Dystonia: collectivizing our experiences.

Dystonia is a little known about, non life threatening but chronic, neurological syndrome causing muscles to spasm and pull the body into abnormal positions.

When people who have dystonia manage to find each other it is an uplifting experience for all involved. Experiences of misdiagnosis and the perception held by many that the cause of dystonic symptoms is all in the head leads to intense feelings of frustration for sufferers. Contact with other people, who have experienced similar pathways before reaching a correct diagnosis and treatment of symptoms, leads to a whole new way of coping with life.

Navigating hospital corridors or waiting in a botox clinic is often the first opportunity a person with dystonia has of seeing, hearing and speaking to others who have the same neurological condition. Not a place where people usually become acquainted! However, there is a sense of collectivizing personal experiences that is better expressed as experiencing a process of normalization when a person finds they are in the midst of a group of people with similar symptoms.

For too long, many people with dystonia have been socially isolated and marginalized within their family and also their community. Seeing and hearing others with dystonia energizes or empowers people to share their experiences of coping by taking part in support groups or even to start a group in their area.

Support groups provide contact, comfort, reassurance, up to date information and a venue for sharing coping mechanisms. Through on-line or local community support groups, sufferers are able to help others and receive help for themselves.

If you would like to leave a comment please do so. It is okay to remain anonymous. Alternatively, contact me by email and I will get back to you.

Sue Bayliss. Cairns. Australia. (s.j.bayliss@bigpond.com.au)