Am I a fraud?

Saturday 7 December 2019

When I meet old friends that I haven’t seen for a few years and tell them I have Parkinson’s, they are usually surprised that I seem perfectly normal. For the most part, I look normal (if a little greyer), sound normal and move normally. I still work, drive, travel and do all the things most people do. I write this blog about all my ailments and travails, and yet there appears to be nothing wrong with me.

Often I feel like a bit of a fraud.

Overall, I’m not doing too badly. It’s about five years since symptoms were first obvious and I’m still in what is sometimes called the “honeymoon period” of Parkinson’s: in the early stages where the symptoms are relatively mild, and the drugs that help compensate for the lack of dopamine in my brain, are largely effective.

On the other hand, most days are a struggle. Occasional shakes, mysterious sharp pains my legs, croaky voice, painful shoulder. Terrible handwriting that I can’t read myself. Struggling to button my shirt, open bottles, enter my PIN number.

And then there’s the biggest problem of all: being tired all the time. Sometimes just a regular sleepy, yawning tired. But increasingly, feeling desperately tired; a tiredness that consumes the whole body and mind: mustering all my will power to stay awake in a work meeting; sneaking off to a study booth for a two-minute power nap that will give some temporary respite. On the commute home I am so fatigued that, even standing up on a crowded underground train, I can close my eyes and slip into dreamland for a few seconds.

So I’m not a fraud. And I’m not alone.

This week I went on a training course about managing your career when you have health challenges. There were some participants with obvious physical disabilities, like a woman with Cerebral Palsy (who, incidentally, is one of the most upbeat people I’ve ever met) or the instructor who has lived with Rheumatoid Arthritis for 25 years since being diagnosed at age 24. However, most of us had hidden conditions, like a young man recently diagnosed with Multiple Sclerosis. Outwardly calm and confident, he was nevertheless like me two or three years ago, trying to make sense of it all and what the future holds for him and his family.

Something Parkinson’s has taught me is not to judge a book by its cover. People live with all sorts of invisible challenges. Some choose to tell the world. But most just quietly get on with it.

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