Stress? Distress? This is not how I thought my life would be!

Dystonia! This debilitating neurological condition tends to creep into our life or into the life of a loved one thus creating feelings like amazement, annoyance, embarrassment, confusion, doubt about our own capabilities and maybe even resentment. Years ago, we may have pictured our future life being very different to what it is now. In needing to come to terms with such unexpected spasms of our vocal cords or spasms in our body muscles, we grieve what we had expected our life to have been at this point in time. We experience a form of symbolic grief. This form of grief occurs when we have lost what we had planned and or hoped for and now realize that is not how our life will be.

Grief is a healing process. A painful and emotional state which occurs in response to a significant loss. In this case, changes in body function, loss of certain lifestyles and employment prospects, loss of once hoped for experiences of ageing, losses in many areas of our lives. These experiences result in emotional, physical and spiritual, changes in our life. A time when good memories, bad memories and thoughts about previously hoped for ideals surface in our mind. An experience of sorting out our loss from feelings and thoughts of anger and hopelessness that may arise.

SOME FEELINGS:
You may experience a range of very strong, yet normal feelings resulting from symbolic grief. Some common feelings are anger, guilt and depression.

ANGER: You may feel angry with health care professionals for not being able to diagnose your dystonia in the past. Sometimes, anger can be towards those around us for not understanding what is happening. Sometimes we can be angry towards ourselves as well as others because we think we are not being believed when we attempt to explain our experience. Some people feel angry towards God for being so unfair and allowing this to happen.

GUILT: It is common for some people to think this condition is all in their head and they need to just get on with life. Some people may feel guilty because they believe their condition affects loved ones in a negative way.

DEPRESSION: This may be an ‘empty’ feeling of deep sadness and worthlessness. Fatigue. Lessened interest in pleasure and most of our usual daily activities. A strong feeling of ‘despair’.

Any of these feelings are a normal reaction to a major loss of health and lifestyle in your life. Your doctor may prescribe antidepressants as a temporary help to assist you in facing your loss of previously enjoyed power of speech or physical fitness. However, have a good talk to your doctor and beware of using medication to ‘mask’ the reality of your experience. Remember, it is healthy and normal to grieve. If you are concerned about medication becoming more than a temporary measure, professional therapeutic grief counseling addressing symbolic loss and grief is available. Your doctor can help by referring you to a professional grief counselor or therapist. This may help to assist you in working through your grief and may also assist you in deciding whether to continue with certain types of treatment. This latter concern needs to be discussed also with your consulting neurologist.

It is my hope that the above article is of assistance to you in identifying some very personal thoughts, feelings and perceptions, associated with living with dystonia in all its forms.

Tomorrow, I will write about stages of grief and how we can identify these stages within our own experiences of symbolic grief. Until then, please do leave a comment or contact me by email on s.j.bayliss@bigpond.com.au but, one more thing before I go. Maria left a comment on blog titled “So, what actually causes this Cervical Dystonia?” Maria gives information about an excellent film called ‘Twisted’ and how you can access this film. Check it out. I ordered the DVD online today through that site. Thank you Maria. Really good information to share.

Sue Bayliss,
Cairns, Australia.