50 Shades of Language

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The use of language has been highlighted during the week by both Different Strokes and Stroke Tattler, so will individuals finally start to listen and take on board how damaging words can be. This includes the type of language used when addressing and/or referring to stroke survivors? Or anyone else living with brain injury or a long term condition.

From personal experience – I am someone with a positive and determined approach to my recovery – the use of negative language and tone adopted by certain individuals who mistakenly thought it would be beneficial to me, was not only patronising, demoralising but even depressing.

We may from the outside, be someone struggling to move on one side or indeed be unable to move at all. We may be unable to talk or communicate as we previously did, but we have not reverted back to our toddler days. We do not need to be spoken to in a tone you would use when addressing a child, we have after all walked and fed ourselves for many years before being struck by this devastating change in our lives.

Despite our visible difficulties, there is the old self inside screaming to be allowed out and to function as it did, and if only we were capable we would scream outwardly too when addressed as victim, told now you can’t do this, you can’t do that etc.

Please o please, reflect on these words and phrases and ask yourself if you had been suddenly thrown into a world such as this and you where struggling to come to terms with it, make sense of it and improve anyway you could, would you honestly want to be surrounded by negative language??

Would it not be more uplifting and beneficial perhaps to be addressed as a stroke survivor rather than victim, after all we have survived the stroke, have we not? This already is more positive and empowering.

When referring to our limbs that are currently refusing to work, or allow any feeling, maybe refer to it as  our weaker side, rather than the disabled side? Also instead of now telling us “you can’t do” at the beginning of so many sentences. How about instead, “whilst you are finding certain things difficult shall we look at what you can achieve”,  and put achievable goals in place.

Can you see how already everything is looking and feeling different to a survivor as we sit there in this currently alien body.

Our minds are often as sharp as ever, we know exactly what we want to say but sadly have lost the ability to voice it and as if that was not frustrating enough we do not want to be spoken to as if we were an infant.

As I write this I am not blaming anyone, I am grateful for organisations and charities that offer help, but I think what it highlights is the importance of stroke survivors being involved and even working within these organisations so those who have first-hand experience of a stroke can help overcome this misunderstanding that currently still exists.

I am talking of mainly about language, but are many other issues such as fatigue, equally so terribly misunderstood and the invisible difficulties. I will use the word disabilities here but this isn’t a word I like.

Often someone with brain injury can still outwardly appear smart, intellectual and deliver information on a professional level. However, this requires so much more energy due to the brain injury that they have to prepare well in advance in order to carryout their task. They will have to rest just beforehand and considerably afterwards. They could not perform in this way for a whole day or several days in a row.

Yet someone who sees them in action and has no understanding of brain injury says, “Oh they have recovered”. Equally, that same person who sees them afterwards struggling with fatigue because they need to sleep, may wrongly say, as happened to me by someone I thought was a friend, “Oh you’re depressed, you need tablets.” I don’t blame this person it is just a lack of understanding.

I also remember when I was sitting in my kitchen unable to move without the help of two people, when this girl came in moaning, “Oh you are lucky I’ve had to walk the dog then I have to work and then I have to fetch the boys from school”, heartlessness went through my mind. I reminded her how lucky she was, I long to go for a walk and have fresh air. I also long to be able to work and drive and these feelings are just as strong as ever.  However, this girl was not prepared to listen. Anyone who like me has been forced to give up their independence, their ability to work, to earn money and to drive,  yearns for all of those things.

Another comment that can be damaging is ‘you don’t look ill’. Lack of confidence is a huge factor with brain injury so we try to compensate. The first time I left the house I was terrified, I felt everyone was looking at me. My OT and Physio had the idea of putting make-up on me to make me look and feel better and then take me out in my wheelchair for something to eat, which they did. Afterwards I was exhausted, but it was AMAZING leaving those four walls, except, again someone I knew, came up to us saying “oh I thought you were meant to be ill” “you look good you’ve got make up on, you can’t have had a stroke”. She was reminded I couldn’t walk etc and had HAD A STROKE.  She drove back telling my neighbour I was out walking in the forest and with make-up on. I wasn’t ill at all.  When I heard this I lost my confidence again, I couldn’t stop sobbing, it had taken so much out of me and I would have longed to have been able to walk but I was unable to get out of my wheelchair!!!

I will stop now otherwise this will become too long but anyone who works with someone with brain injury will hopefully understand the value of supportive encouraging words to help build confidence.

Brain injury is cruel enough and because it is invisible it is so terribly misunderstood by so many, which makes it a lonely condition. People often avoid us because they don’t know how to deal with it or what to say.

Please try to remember we are still who we were, just temporarily slightly broken. If a bone breaks it is put into plaster, we just need time and support too.

 

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