I am a Writer for ‘Parkinson’s Road’ global support community.
Identity is a significant subject for people living with a chronic health disease/illness or disability. For some, the chronic health problem or disability is with them from birth. In those cases the person’s identity, as being someone living with a chronic health problem or disability, is more likely to be formed earlier in life. Here, the person has to encounter the reactions of people as they go about their life. They are faced with a society which has a construct designed for those who are not chronically ill or disabled, from an early age. Hopefully, the person will have developed a clear idea of their own identity in childhood or adolescence and many of their robust coping skills will be in place by the time they reach adulthood; just as is ideally the case for those without chronic illness or disability.
For others, who may be blissfully going about life without chronic disease/illness or disability, the unexpected onset of chronic ill health or disability can be a trigger for major anxiety. This is because the person’s existing sense of their own identity, formed throughout childhood and adolescence, may suddenly no longer fit their new reality. Much of what they knew about being who they are may no longer apply. A process of introspection and re-evaluation is likely to take place as the person adjusts to their new diagnosis.
I was quite lucky. Although I was only diagnosed with Young Onset Parkinson’s Disease last year, my symptoms started just over twenty years ago and so I have been through my own introspection and re-evaluation over that time, while being subject to tests and monitoring. I did not have to face a more sudden or unexpected change in my sense of my identity and I long suspected what my disease would turn out to be.
Witnessing Identity Theft:
In getting to know people with Parkinson’s, through online communities, I have witnessed the ordeal that some people have to face when their suspected, or even diagnosed, Parkinson’s turns out to be something else. For example, some people do not respond well to the medication they take called Levodopa and this can determine that their illness is not, in fact, Parkinson’s Disease. Some people are, instead, then diagnosed with ‘Atypical Parkinsonism Syndrome’; an umbrella term for a number of diseases that have some symptoms that mimic those of Parkinson’s Disease, but which are not caused by Parkinson’s.
Can We Expect the Unexpected?
How difficult, for some, to have grown into adulthood without any sense of chronic illness or disability and to then be diagnosed with an unexpected and life changing disease, illness or disability. The amount of self-exploration and re-valuation to adjust to the identity of a person with a chronic illness or disability, and all that represents, is a deep, often emotionally painful and challenging process for many.
To be someone who achieves that and then finds that there was a mis-diagnosis, to lose the identity you had just worked so hard to adjust to and then to have to accept another new diagnosis is incredibly hard, and even de-stabilising, for many.
In such cases, some people may withdraw from medical support and may even hide from key personal relationships while they are overwhelmed and in fear of a whole new set of circumstances. They may enter into a state of confusion, mistrust and deep anxiety; their mental state exacerbating a range of physiological, psychological and behavioural symptoms while they remain in flux or in denial. This can lead to chaos and breakdown developing in all areas of the person’s life.
If you experience this, please seek help and support. urgently Your medical care lead is the best person to contact but even speaking with a family member, friend, colleague or your family Doctor can be enough to alert people that you are in difficulty. There is help available for you. You can come through this difficult experience.
Certainly, counselling and psychotherapy can be very helpful during such times of identity change or crisis.
(c) Dean Parsons. February 2018.