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A person covers their ear to the sounds of others

Don’t Cry For Me…

I’ve just started a new job, well sort of job. It’s a 9 month business builder programme, creating a company which solves the challenges faced by older adults. I’m incredibly proud to have been accepted into the 45 strong cohort, especially as I recently discovered over 600 people applied. As part of the programme we have talks by around 3-5 experts every day, and often Parkinson’s comes up in their slides and I giggle to myself knowingly.

What’s worse than pity?

Last week I attended a talk by a professor and his stimulating theories on ageing and Parkinson’s led me to pluck up the courage to approach him afterwards and explain my situation. I thought he might be interested. At worst I thought he might look at me with pity. But what he said shook me to my foundations and left me feeling uncertain and scared.

“I’m sorry to hear that. Oh well, don’t worry, you’re owed something better in the next life.”

Jaw drop. The insinuation that I just give up on this life hanging in the air. Here I am sat feeling smug that I was accepted onto this programme, and he’s written me off in under a minute. He’s made everything I work so hard to do every day seem petty and futile. I’m sure that’s not what he meant but the ‘sorry’ was enough to send me spinning. The ‘next life’ comment just dealt the death blow. I returned to my seat, my cheeks burning, feeling like everyone knew I didn’t belong.

My core was shaken

Whenever this happens it rocks my, until then, steadfast feeling that I can handle what life has dealt me. Since my diagnosis, I’ve felt positive about my Parkinson’s. I’m honest with myself and don’t stunt my emotions, so when I’m sad I cry. But predominantly I feel positive because I’ve had such amazing opportunities since diagnosis, met incredible people, and seen wonderful things. So when I tell someone I have Parkinson’s and they tilt their head and give me the pitying look, it seems so at odds with how I feel about it that it throws me off.

Don’t say “I’m sorry”

When anyone says ‘I’m sorry’ I want to yell ‘I’m not!’ but I resist because I don’t want to embarrass them. I shudder whenever a newspaper prints the word ‘sufferer’. I get upset if someone says I can’t do something I know I could manage.

For me, the most challenging side of having Parkinson’s is managing other people’s emotions towards it. Especially when they don’t align with my own. I’m not deluded but it makes me suddenly remember that it’s serious, that I’m not getting any better and my future is uncertain. Every hand placed on my head, every prayer muttered, every throwaway comment makes me panic.

But I’m slowly realising that even though I’ve come to terms with it, every person I tell needs time to grieve it and understand it before they can accept the way I feel. And it’s only fair that I allow them that time.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • AnnieB
    1 week ago

    Hi I know how it takes the wind out of your sails, just when you feel all is going well, is it a reality check and you are deluding yourself? Do other people have a view of Parkinson’s that is unnecessarily negative.
    I know it pulls you up with a shock and a need to take stock but we have to find the positive……..in order to cope and carry on

  • Dan Glass moderator
    2 weeks ago

    I read this the other day, and it was great.

    While I think that the “sorry… aah” knee jerk reaction is instinctive, but your positive attitude dispels it nicely, as does your thoughts on coming to terms with it.

    I don’t know how I would find a next life remark. I’ve heard the “you’re too young” remark, which I reply “we’re all too young” to.

    I feel like if I ever spoke in public on PD, I’d begin with the 1-2 thought of.

    “I know that your reaction to what I’m going to tell you is ‘aaahh,” but Parkinson’s changed my life for the better in a lot of respects. Oh, and before we go further with me talking about my Parkinson’s, yes, I’ve tried CBD oil and it didn’t work for me. Now I’m going to talk about my life changes and why we need to educate and advocate for a cure for PD.”

    Keep writing! We’ll keep reading.

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