It’s terrifying for friends and family when they realise that their loved one has a brain injury. Initially their behaviour and comprehension can be all over the place, so it’s difficult to understand what is happening. But with time, patience and the right therapy, the effects can improve. For some there will be massive improvements, and unfortunately not so much for others. I am one who has improved so much that strangers find it hard to fathom what I’ve been through. But that has it’s own challenges, as it depends on how people communicate as to how well I will respond. For many who are living with an invisible disability this is a common issue. So I thought it would be useful to explain why some things are challenging, and ways others can communicate better with survivors.
How to communicate with someone with memory issues.
One of the most common symptoms of brain injury is a poor short term and working memory. So many survivors, like myself use reminders such as their phones or diaries to try to combat this. But what is more difficult is the details. There might not be an appointment that needs to be booked, but there can be lots of other details which someone is imparting to the survivor. The individual may understand at the time, but key details could fade afterwards. The best way to tackle this is to make sure they have something to refer back to. So I would urge people to also communicate in writing, to help jog their memory. A text, email or post it note can all help ensure the key message is cemented.
Consider the language you use.
Slower processing speed, which I am affected by, means I might not always be able to keep up. This is particularly hard if the words you use are complicated, or you use jargon and acronyms I’m not used to. I find this happens a lot in the medical industry, where things with long titles get shortened to initials. But often patients aren’t familiar with these so, those like me can find this goes over their heads. I’m not one to interrupt, so will wait until the speaker has finished to ask what something meant. But with memory issues I often find that by the time I can ask, I know I needed to ask something but I can’t remember what.
Remember it can be difficult for a brain injury survivor to control emotions, so how your message comes across is more important than ever.
Everyone has at sometime in their lives received a text that made them think the sender was being off with them, but it was just because it came across wrong. Well there is an increased risk of that happening when you communicate with a survivor, particularly in writing. Not that long ago I received an email from a nurse regarding my dad. Whilst I understood what she was saying, and why, the tone came across as attacking to me. She was genuinely sorry that I read it that way and we moved on. But what she didn’t see was how much I cried when I read it. I took it to heart and ended up having a terrible migraine as a result. With just a little more consideration, the stress I endured could have been avoided.
In summary I would ask that people don’t take it for granted that their message has been received and understood. In our modern world we do everything at speed, and that can mean a personalised approach is harder to achieve. But remember every brain injury survivor has been on an incredible journey and deserves that little extra.
10 replies on “Understanding how to communicate with brain injury survivors”
Just a couple of things I have difficulty with, if I’m concentrating on a task and somebody interrupts me by asking for or about something unrelated to what I’m doing I don’t understand at all what they want unless they repeat it when I’m giving them my full attention. The other problem is just as you describe in your post misunderstanding the way that things are said
That’s an excellent point David. I should have said about choosing timing and setting so that the survivors have less distractions. Thank you 😊.
Yes! And I hate being put on the spot. I go completely blank.
I so love that quote! It’s been years since I heard it. (No, I didn’t forget) I find it really challenging communicating very simple things with others who have perhaps a worse ABI than I have. And it’s when I’m trying to be diplomatic and not rude and blunt like others might…….Disaster!
I find it hard if perhaps I didn’t quite make sense, thinking of another way of putting it. But as long as they are patient we get there.
Great blog again, i can relate to your words, misunderstanding is easily done. I find that I can also ‘overthink ‘ situations, my information processing is slow too, then I can over think the situation, anxiety builds before I know it, I am stressed out and then there’s a sleepless night and knock on fatigue. All just from a letter, a text or conversation. I find best to leave sometime now and talk it through with someone else, especially if I see it as a ‘threat’, because I misunderstand the meaning behind it. Revisiting and renumerating is a bad habit to get into. Give yourself some breathing space, before you reply, probably is best .
I’ve always been an overthinker, but I’ve definitely got worse. But if I talk round it and acknowledge that there are two sides to every story I can get there.
like you and so many of the other commenters…getting my thoughts into words has proven at times hard. i find people trying to finish my sentences for me is a real PITA.
i get so frustrated..i can see the words in my head but they get lost getting to my mouth and i go blank..at times i just shut down and remain quite. left alone in my in my own thoughts is when i start to over think and my brain gets tired..and the headaches start. people giving me time to finish my own sentences are the best. thank you for riting this blog
sincerely
a fellow TBI survivor
I find it also makes me feel like they want me to hurry up and shut up. If they can’t wait for a word I think they just want to be able to move on to something else. I know this is the pessimistic view and often people are just trying to help.
Thank you so much for your post and comments. By the time I read their body language and asses mine, they pause for my reply but I haven’t even started listening yet! Then they move topics and I’m not sure how we got there. I try to get through the mud for some words to reply with but they aren’t as deep or thoughtful as I would like. I have trouble reaching that higher level thinking during a conversation, let alone express it! Then I notice some social cue where they seem disappointed. I think they think I’m just uninterested or disagree when really they are used to old me understanding what they feel before they even finish talking. Glad to hear your experiences are similar! And that it’s not just me where one bad encounter can ruin a good day. You got to keep finding that peace.