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What’s in a Name? The Living With Parkinson’s Blog

Disease or Condition?

I had a call from a friend yesterday that had been reading my blog. She asked me why I kept referring to Parkinson’s with the word ‘Disease’, as she knows I hate that term. I explained that it is a new website and I wanted to attract the widest traffic I could, therefore using the term ‘Parkinson’s Disease’ was kind of useful. Especially for those who might be newly diagnosed and perhaps unaware of the modern approach to dropping the dreaded ‘D’ word. In addition, I think a lot of people in the USA use the term Parkinson’s Disease or PD. I didn’t want to skip anyone.

Yet she made a good point. I much prefer the possessive term “Parkinson’s” when referring to what’s wrong. Some people like to call it a ‘condition’, and I don’t have an issue with that either. Who wants a disease? It makes you think of pestilence, the pox, sores, boils, something hideous and contagious. Simply calling it Parkinson’s does somehow feel slightly more palatable, even if it doesn’t quite help my symptoms.

 

image of a virus close up
This is actually a virus, but hey, who’s paying that much attention?

Why do people care about the words so much? I suppose it’s hard to ignore really. Parkinson’s NZ recently renamed their people from ‘In-home-educator’ or ‘community educator’ back to ‘Nurse.’ I have a real issue with this. Why is it they are happy to drop ‘disease’ but remain blinkered to the very real discomfort so many of us  have with this change? “She’s my Parkinson’s Nurse.” Why can’t she be my Parkinson’s Support Worker, or Advisor? There is some argument around the fact that they wish to recognise the qualifications of their staff, and that’s laudable. However, I thought the purpose was also to support people with Parkinson’s, and there’s a very real issue in engaging people. Specifically men, that are hit with young-onset Parkinson’s.

Let’s be really honest here. Would you want to call a ‘Parkinson’s Support Worker”, or “Parkinson’s Nurse?” Why can’t they be called “Parkinson’s Advisors” and list their nursing qualification underneath?  I know that it might be a frustration if you’re an actual nurse, but the image of nursing is still (sadly) a stereotype. If I say ‘nurse’ you’ll invariably think of a woman in a dress, even though that’s thankfully an increasingly out-of-date image. If I say I need a nurse, you’re going to think I’m desperately sick.

cartoon image of female nurse with oversized thermometer.
This was the first image I found when I typed ‘nurse’ into the image search. I kid you not.

There we are. Full circle. You may as well continue calling my illness a disease. It’s just lip service.

Words do indeed paint many pictures. Not all of them when we originally intend. We must strive for excellence in all things, and I believe that thinking about your target market should alter your approach. Having said that, I might drop the ‘disease’ myself now. For a while at least. If only it were that easy to truly shed myself of this dreadful thing.

Until next time, Kitty.

 

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kitty laughing into camera
Kiity Fitton – usually up to mischief.

Kitty Fitton is a motivational speaker, MC and comedian. She is also a full-time blogger and writer. She is mother to four small people and was very cross to discover she had Parkinson’s Disease.

Find out more at her personal site below. 

emma_k
Emma Kyriacou. Quite good at hitting things.

Emma Kyriacou is a real-life ninja. Taking up Karate to help fight her Parkinson’s Disease, she’s co-founder of Good Moves and is passionate about promoting exercise to improve mobility and neuroplasticity. (Is that a word? It should be.)

Find out more at her personal site below. 

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