Wednesday 30 January 2013

Mourning the loss of yourself

When I was diagnosed with Parkinson’s I went into mourning for the loss of the person I thought I was and for the loss of the future I expected to have. There is said to be five stages of grief and mourning: -


My first reaction to being told I might have Parkinson’s was disbelief, “how can I have a major disease like Parkinson’s?” Denial is understandable because Parkinson’s is rare (even rarer for early-onset) and there is no definitive diagnostic test. The diagnosis is difficult for Doctors because Parkinson-like symptoms are present in other diseases; the method of diagnosis is to eliminate these other diseases and by default the possibility that remains, Parkinson’s, must be the cause. Also, due to the complexity of the genetics you are unlikely to have an affected relative so it can be unexpected. It is natural to reach for denial when faced with the challenge of coming to terms with a disease that is chronic, incurable and progressive.

I could move through denial because I was diagnosed by a group of experienced consultants and I can see and understand the symptoms in me. However, the thought does cross my mind that maybe I haven’t got Parkinson’s but I quickly close down that train of thought because it doesn’t help me to cope with the symptoms I do have. Denial is a barrier to helping yourself.


An understandable reaction to the injustice of Parkinson’s is anger, “Why me?!” Because I reacted to my stammer with anger, I knew such a reaction was self-defeating; by engaging with the anger it becomes a potentially endless fight with yourself because the fact of the disease cannot be changed. I was determined this time to channel that anger into coming to terms with Parkinson’s; the disease is just part of my thrownness and as such nobody (including myself) is to blame and therefore such anger is aimless and can be left to dissipate.


It is difficult to bargain with the chronic, incurable and progressive nature of Parkinson’s. The loss of neurons in my brain is outside of my conscious control and therefore I cannot offer anything to stop this from happening.

Sadness and Depression

Sadness for the loss of who you thought you were can become an all-consuming depression. Having gained understanding through previous episodes of depression, I could overhear my depression as just one of many possible reactions to my diagnosis. I am still free to choose a reaction despite my Parkinson’s.


It is a particular feature of mourning for yourself that doing so means you are still capable of some kind of action. Being diagnosed with Parkinson’s doesn’t mean you lose the ability to choose; the loss of one expected future leaves space for another. There is still something left to do. This insight makes acceptance easier to achieve and brings the mourning process into a better context.

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