Like a third of people with the disease, I hid my diagnosis. But trying to cover the symptoms only made them worse – and telling people has made life easier
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| ‘I didn’t want people to notice that anything was wrong so I just stopped engaging with people if I didn’t have to.’ Photograph: Alamy April 19, 2016 |
I was 48 when I was diagnosed with young-onset Parkinson’s. It was 2007 and I was working full time as a geologist. Everything was going really well and I was aiming for a promotion. Already reeling from the diagnosis, the last thing I wanted was for Parkinson’s to interfere with my career or single me out as different – so I hid the disease like 37% of sufferers asked by Parkinson’s UK.
I have three daughters who were doing their exams at the time. I didn’t want to worry them, or my family and friends, so I kept it quiet for the first two to three years. Looking back I was probably in denial about the whole thing.
Although I did tell my wife and, informally, my boss at work, I made it clear that I did not want it to become common knowledge. My symptoms at the time were mild, the most externally obvious was a resting tremor. The only other big symptom for me at the time was losing the ability to type with my left hand – it dragged, giving me inaccuracies all over the place. I covered this in work by saying I had a Repetitive Strain Injury and buying dictation software.
At home I would say my bad neck was due to a trapped nerve, when actually it was Parkinson’s causing the problem. Needless to say over the next few years I became slower and quieter. People started to worry about me because I had become a much more withdrawn person.
I didn’t want people to notice that anything was wrong so I just stopped engaging with people if I didn’t have to. Parkinson’s became the elephant in the room. I thought I was hiding it, but people could see I had changed and they didn’t know why.
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| ‘Looking back I should have told my family sooner.’ |
It was sometimes awkward at work too, people thought I was tired from travelling as part of the job but sometimes I would also have involuntary movements in the office. It felt like a no-win situation – either show your Parkinson’s or become a different person.
My mother picked up on the quietness; she took me to one side and asked me if I had cancer. When I finally told my children, they were angry with me and didn’t understand why I hadn’t said anything sooner. It came to a head at work when a promotion review board said I “lacked presence”. This was not who I was, but it was who I had become because I was trying to hide the fact I had Parkinson’s. I explained this to my manager who was very supportive, and I got the promotion.
Looking back I should have told my family sooner. Trying to cover symptoms can actually make them worse. Even now when I’m with people I know, I can be fine, but walking into a new room with new people, the tremor can kick in. Work was difficult because I didn’t want to be written off because I had what people consider an “old person’s condition”. I did feel that some people’s attitudes changed towards me once they knew.
It definitely felt like a “coming out” when I decided to tell people, it was a transforming time and people’s reactions differed greatly. But having support from loved ones is key when you are trying to get your own head around a diagnosis like Parkinson’s.
http://www.theguardian.com/commentisfree/2016/apr/19/parkinsons-disease-diagnosis-symptoms?
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