Dystonia: revisiting grieving and symbolic loss

Symbolic loss is how we describe feelings reflecting the loss of what we previously expected our life, health or relationships to be at any particular point in time. This is in a sense different to the intense feelings of loss associated with the death of a loved one. Although there is also a huge element of symbolic loss accompanying bereavement of loved ones, people coping on a daily basis with the symptoms of dystonia live with their mind's eye image of what they had hoped their life to be. Following diagnosis of a non-life threatening yet incurable neurological disease comes the inevitable cycle of coming to terms with how life will be from that time on. There are recognized stages of grief regardless of whether or not we are grieving the actual loss of physical ability and health, bereavement, or any kind of symbolic loss like changes to what our hopes and dreams had meant for us.

Five common elements in the stages of grief identified and named by well respected Elizabeth Kubler-Ross are denial, anger, bargaining, depression, and acceptance. In relation to dystonia, we may think of these stages as follows.

Denial – Initial sense of numbness when we say things like “I could be knocked over by a feather! This can’t really be happening, can it? It must be a mistake."

Anger – We may say things like “how dare this happen to me!" Blaming God, a loved one or some previous situation.

Bargaining – Believing we may influence a change in what has happened in our life by trading things like "There is no way I will be intolerant of others again if only I can be healed of dystonia.”

Depression – When ‘stinking thinking’ takes a hold in our mind and we just can not see any sense in doing anything or seeing anyone.

Acceptance – Well now. Life goes on so I had better get on with mine!

The above mentioned stages do not necessarily occur in the order described here. Each stage may mean very different things to different people. Some people may experience all of these identified stages, others may experience only two or three.

The grief experience may also be described as feelings of shock, anxiety, guilt and loneliness. The physical component of grief may have the effect upon us of a disturbed sleep pattern quite at odds with our normal routine. We may feel nauseous, lethargic, and unable to eat or enjoy food. When affected by these experiences we gradually become aware of how we need to make lifestyle changes, accepting that our life may never be quite the same again. We may look at how we have dealt with changes previously, how we can learn from those past experiences and what we need to do to adapt our lifestyle now.

Hopefully, the above links will lead you on a path of personal growth. Achieving a greater understanding about how to recognize and cope with feelings, pain and social isolation, associated with dystonia empowers us to accept our situation and collectivize our experiences through contact with others. This link will lead you to local, national and international, support groups.

Sue Bayliss. Cairns, Australia.