How A Little Word Can Make All the Difference

This week from the MS & Me archives series - Lucina Russell discusses how words people use to speak about people with MS has an impact on our identity. There’s also mention of dating and road frontage!

I’ve always hated labels. As a child, it was the itchy, scratchy ones on the back of new tee-shirts that had to be cut off before wearing them. In later years, it’s the other ‘labels’ that have caused me more discomfort. The labels that stick, that brand you. The ones that are hard to shake off once you have them.  

Ones like ‘MS Sufferer’.  Big label.  Huge connotations.

I should say that I absolutely and respectfully acknowledge that there are many people with Multiple Sclerosis whose journey with this illness is a lot rockier than mine, who ‘suffer’ more than I. I am conscious of those people particularly when I write this and I understand that they may disagree with me, because their experiences are different than mine and may feel that their rockier road should be recognised as such.  

However, I write this taking a broad view, thinking of myself and the many people that I have encountered who have MS since my diagnosis.  

When you apply the ‘MS (or other chronic medical condition) sufferer’ label, you are allowing the label to consume the person, with the individual coming a close second. The media are divils for it. Maybe ‘MS sufferer’ makes a better headline than ‘person with MS’, but in my opinion, it’s neither a useful nor always accurate description.  

To me, that horrible noun takes away their humanity, their personality and suggests other words like ‘invalid’ ‘victim’ and even ‘martyr’. It’s not how I want my children to speak of me, even if my health deteriorates. The people with MS that I know are citizens, tax payers, parents, lovers, advocates, sisters, brothers, bloggers, daughters, sons, engineers, philosophers, fundraisers, athletes, who also happen to be have a common monkey on their back. And deal with it they do. With courage, dignity, zest, humour and yes, at times, with anger, disillusion, disappointment and fear.    

While I am on my soap box, the phrase ‘MS patient’ bothers me too. It conjures up images of a person passively nodding in agreement to the words of the Master.  Most people I know with MS are very well informed, active and educated participants in the decision making around their wellness and health care plan. In my opinion, a person with MS, or any other illness is only a ‘patient’ when they are in a consultation with, or being treated by their GP, neurologist, or other specialist. Once they walk out of that room, they are back to regular old Citizen Me, getting on with life.

Perhaps it would be useful to apply these labels to two personality profiles, one looking for a new job and the other, a date

‘Award-winning civil engineer with 20 years’ experience on large scale international project and Multiple Sclerosis Sufferer seeks exciting new challenge’ 

or 

‘Twenty-something fun loving girl, with ten acres, including road frontage, looking for a man to share her dreams.  MS patient’

To me, the ‘award-winning’ engineer and even the much sought-after ‘road frontage’ pales into the background, with the medical condition to the fore, in bright shiny lights. 

On a number of occasions, I have contacted radio stations and newspapers about their use of the phrase ‘MS sufferer’, to ask them to consider their use of language, but I have yet to receive a response from any of them. That won’t stop me from calling them out about the lazy linguistic choices that put me and other people with MS in badly-labelled boxes. Maybe the words they use don’t really matter to them, but they do to me. For now, I’ll put away my soap box, but in an easily accessible place!