50 Shades of Wrong Language

I have visited the following subject before, but it is sadly something that still requires more awareness as it is yet to be fully understood. As brain injury is invisible and we do our utmost to look outwardly healthier than we are feeling inside, we are often treated as though we have recovered. People either expect too much of us, or as one stroke survivor reminded me recently, they do not know how to communicate with us any longer so they take the easy option and avoid us. Do they not stop to think that inside we are the same person, with the same feelings we had prior to stroke? So perhaps being ignored by those we believed to be friends might be hurtful.

Some of the most common mistakes when communicating with someone with brain injury could be forgiven, but please, I ask, can you stop and think before you speak? Some words can be damaging and hurtful. If someone has a limb in plaster it is obvious that a bone is broken yet the brain can not be protected in this way when it is damaged. There is a broken pathway within the brain causing the disability/difficulties within it. The person suffering this breakdown is doing their utmost not only to understand and make some sense of what has happened, but also try to remain cheerful. Not only are they trying to make some sense of the situation, they are also trying to improve.

So I ask again, when communicating with someone who has brain injury, however frustrated you may feel towards them, and don’t get me wrong you will do. Please please try and understand it from their side.

The invisible signs such as fatigue, concentration, memory problems, insomnia, anxiety, depression and chronic pain are often more difficult to deal with than visible disabilities because people question them, and sometimes they do not even believe them! A memory problem can be more disabling than a limp, yet if that same person had a shaven head and scar from one side to the other, suddenly that same disability would not be in question. Do you see the difficulty people are faced with, in addition to the ones they are already having to cope with on a daily basis?

Other things often said, but can be very damaging are ‘you are very lazy’ and ‘what do you do all day’. Simply getting washed and dressed, eating your breakfast can require such an effort and cause such fatigue that you are forced to sleep again, and this happens because you have no choice, the brain simply shuts down.

Apathy is a condition and there is help out there and drugs for this condition. It is a case of recognising what stage the person is at, what they are realistically maybe capable of and getting help accordingly.

Two other damaging phrases some people use when addressing a stroke survivor is, “How many times do I have to tell you?” and “You shouldn’t say that in that way it upsets me”. Do not forget a person with a brain injury may barely remember their age, what day it is and struggle to remember the beginning of a sentence by the time the person telling them reaches the end, yet they are doing their utmost to remember everything. They may not even realise how much they have forgotten.

Some of the most common signs of brain injury are irritability, and anxiety. So people should never say to someone with brain injury, ‘you are so snappy, you are always grumpy.’ Can you begin to see how ever increasingly difficult and upsetting their world is becoming, because of a few flippant phrases used out of thoughtlessness?

Another comment, often made by those who care for others with brain injury, which is upsetting and damaging is: ” Have you any idea how much I do for you?” Have you never thought that the person you are doing it for is fully aware how much you do, wishes you did not have to, and it hurts them inside on a daily basis. So how is it going to help, or more importantly make them feel, hearing those words?

If someone is trying to talk or trying to attempt a task but it is taking forever do not be impatient and say “Oh let me do it”, or finish their sentence for them. Appreciate how much effort, hard work and frustration it is taking, and at least give them a sense of achievement by letting them finish their sentence.

If the person with brain injury has achieved a goal, which to you may appear small, keep that feeling to yourself; to them it is huge, as it is an achievement and it needs celebrating.

Remember, every goal achieved however small needs to be celebrated and a new target needs to be set. Then you can grow together, as the person with brain injury becomes more confident and is able to do more, they are less reliant on you. You both benefit.

This is not in anyway meant to be a criticism of carers, who I have the utmost respect for. It was simply prompted by things read in the press, which highlighted yet again the wrong use of phrases used by professionals, friends and family members when talking to people with brain injury. It is not meant to single out carers, so please do not feel this is so.

One Response to “50 Shades of Wrong Language

  • Hi.I have just read your piece in the At Home mag from Aug 2015. It ended by you mentioning how hard a stroke is for family and friends to get their heads round too. My little brother had a massive stroke in march 2014. He was only 34. He lost a leg thro it and has made a truly remarkable recovery having almost lost the other leg too. He has major problems,tho is still perfect at poker yet often dusnt know the difference between yes and no! He is absolutely amazing. I would swop with him if I could t take the pain and distress from him but I know I could never cope with it as well as he has. He almost ‘accepted’it immediately, yet 2 1/2 yrs on I still get very upset for the life he dusnt have any more. I spent a week looking after him n daily he asked for a do nut and looked pretty unimressed with my exciting offerings finally mum returned (he lives at home and she’s primary carer and typical loving mum) and told me he wanted a vanilla slice! We laughed but I don’t know how he copes so ridiculously well, but it was nice to read us who didn’t physically have the stroke were actually mentioned. That meant a lot to me. Thank you for taking the time to write such a hard but nice to read article. I wish you well as a stroke is the hardent illness ive ever seen and due to its differences every time a very difficult path to travel. Suzanne x

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