The Language of Parkinson's: What To Say vs. What Not To Say

When my Nan turned 90, I wrote in her card that I was grateful for inheriting her stubborn streak. Some of you might be thinking that’s a pretty insulting thing to say to your grandmother on her birthday but on the contrary, to me being called stubborn is high praise.

I credit the women in my family for giving me their tenacity, something which has served me well since my Parkinson’s diagnosis 6 years ago. It is my stubborn streak which makes me get out of bed each morning. It is my stubborn streak that keeps me pushing on in my career. And it’s the thing that makes me fight for the future I had planned out.

Being stubborn is not always a negative thing

Stubbornness, when aimed in the right direction, can be extremely powerful. It can make you push yourself harder, try new things, and challenge preconceptions. It is strong stuff. So I am on a bit of a mission to reclassify the word as a positive.

Negative terms that need to be reclassified!

Thinking about the words I hear used negatively a lot around Parkinson’s led me to wonder if I could ‘repackage’ some of them too:

‘Girl’

A lot of the time when I am being referred to as a patient, I am called a girl, rather than a woman. Sure, I take my Mum to my appointments, and I often get mistaken for younger than I am, but I am 36 years old. ‘Girl’ just doesn’t seem right.

I think my dislike of the term stems from the connotations that have built up around the word. ‘Girlfriend’, ‘like a girl’, ‘Girl Boss’ are terms that all sound so transient and weak to me. I feel like we need to give the word itself a bit of a makeover. Then perhaps I would not feel so offended.

‘Alone’

Every time I chat with anyone, the topic of my living situation comes up without fail. People are often surprised and even a little concerned to hear I live ‘alone.’ But alone is not necessarily a bad thing. I can eat when I like, sleep when I like, and be on my own when I like. And then, because I am not really alone, I can invite people into my space when I like.

‘Disabled’

I have dodged referring to myself as ‘disabled’ for almost 6 years, but sadly if you want any support or financial help you need to use the right lingo. Every time I say it out loud, I’m screaming in my head ‘differently abled!’

Negative terms that should be outlawed!

And then there are some words I would rather just outlaw:

‘Carer’

The term 'carer' sounds so impersonal. It is like someone stops being a loved one and becomes ‘the help’ overnight. And there feels like no differentiation between hired and family care.

Try instead: 'People with Parkinson’s and those that love them...’ or ‘He hired a personal assistant to help with his daily care.’

‘Inspirational’

The term 'inspirational' is well-intended but so overused that it has almost lost all meaning.

Try instead: ‘He was an incredible person.' or ‘That talk was enlightening.’

‘Disease’

It sounds like it is contagious.

Try instead: ‘I’ve got Parkinson’s.’

‘Patient’

Errrr. I am only a patient in a medical situation. Outside of that, I am just a human.

Try instead: ‘We tested our products with people living with Parkinson’s.’

‘Sufferer’

Grrrr. This term is a newspaper journalist's favourite. It is wielded to provoke maximum pity.

Try instead: ‘Parkinson’s fighter’ or ‘Person living with Parkinson’s’

‘Normal’

What is normal anyway?

Try instead: ‘Those symptoms are not typical.’