For the first time since this diagnosis I felt that someone judged and defined me by my ‘condition’.
I returned to work after three weeks off – I am an essential worker in a hospital – and there was an HR requirement that I fill in an online questionnaire about my physical health. This is apparently to identify people who may be more at risk if COVID were to enter the hospital environment. There was a tick list of health issues and an ‘other’ category, so I thought I should put down that I have Parkinson’s. I also put my age – 60 – and my BMI (which I think I might have over-estimated). I also said that I am early in my diagnosis. The system then looked at my responses and decided I was a ‘Category 3’. This category means that basically I can sit in an office, or work in a kitchen or some back of house situation but cannot work on the ward in a clinical capacity.
When I realised the outcome of this process I felt many things. I felt ‘judged’ by some person in their little HR office who probably googled Parkinson’s and went, ‘Oh people with Parkinson’s are very vulnerable’ and decided I needed protecting!! No conversation, no acknowledgement of the fact that I said I was early in my diagnosis. It is the first time I have felt in any way ‘disabled’ by this condition I find myself with. I have got to a good point since my diagnosis where I do not think constantly about Parkinson’s and just get on with living my life. It was upsetting to be thrown into a space where someone – who has not met me – decided I was ‘at risk’. That I was vulnerable and they needed to prevent me from being in a situation where I faced a perceived risk.
As a fully functioning and intelligent adult, I felt my rights to make my own decisions about my health and well-being were being taken away from me… and then I got angry! I spent some time off the ward the next day in my bosses office while she attempted to sort things out for me. Like I said to her, two things are not going to change. Neither Parkinson’s nor COVID are going to go away. I WILL NOT have COVID and my employer decide that I cannot continue in my career so much sooner than is necessary. I have the right to decide what is or is not a risk for me and whether that risk is acceptable.
I choose to continue to work. I choose to do so because my work is one of the things that gives my life meaning. I choose to do so because I feel I am no more at risk than many others in the community. I am lucky that I have a supportive boss and was able to go back to work. But, I have certainly used the ‘system’ to voice my displeasure at the way I was treated and the lack of consultation. I hope that their tick box system does not cause anyone else the level of distress it caused me and that they – or someone who supports them – can stand up and say ‘I will not have you define me by my condition’ and insist on being the one who makes their decision for themselves.
I am not a child. I do not need someone protecting me. I am strong. I am able. I am an adult and I will be listened to!
My journey with Parkinsons 