This as been a major problem my whole adult life post BI. The mental chaos that goes into just dialing a number then to have to try speak to someone who has a brain on fire. I soon forget what I want to say as soon as hear a voice on the other end. The only way I can possibly engage in conversation is if others prompt me all I end up hearing is loads of babble I don't understand.. my sarcastic humour will just laugh it off but in all seriousness I don't make any official phonecalls to anyone these days without someone to prompt me..this is definitely a hidden thing the outside world don't see.
Does anyone else struggle with phone calls post BI?
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Survivor37
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Yes, and I am getting better at it. A very slow process.
Making phone calls is a big deal because it is multitasking - you have to hold the phone, remember the number, dial the number blah blah blah. It takes a lot of energy points.
Then of course you get confronted with what ever happens during the call, getting through the automated stuff to actually speak to someone and know it is the right someone can be exhausting.
For a long time I literally could not understand what people were saying at all. I did better with the person but I couldn't understand all the automated stuff that came before. I had to have help.
I also used to have to ask someone ahead of time what to say, because I would just blank. I would need notes liek:
Hello.
Is this x place?
I am trying to do y, can you help me?
My name is
etc.
I was like that in a lot of conversations as well. Part of how I practised my way out of it was to have penpals online. Yes, I dodged a lot of scammers but it is still a good way to practise as you get time to think about what to say and you can't really muck it up - after all you don't really know the people, won't ever meet them, so you can muck it up a bit and it's ok. There are lots of people out there.
Anyway I did go to and do go to the local society a lot for help with stuff like that. I am also really clueless when it comes to forms as I really struggle to understand the questions unless they are really stratightforward, and as we know most agencies don't speak that language.
I will do things via email if it is possible. Sometimes it is. Then I can take them in and get help understanding and getting an answer together, and because I keep the emails I can look at them again if I forget what I did.
I think listening to the person at the society make calls with me helped me a lot, as I kind of picked up from her what to say and she is really good at getting information from people and getting help from them. Her style is definitely something way foreign to me, but it works better. Mostly she talks really slow, sounds hesitant, gives them lots of empty air to talk, makes some chit chat about the weather or whatever. She says a lot of them deal with angry or abrupt people all day and if you sort of stay chill with them they do with you.
There have been times when I have totally struck out. I find then if someone at the society calls with me there, or sends a fax, it can really get through some log jams.
I am in Canada so we have Brain Injury Societies of various sorts, depending on the province. They are non profits who help people with bi's in some limited, but important, ways. We don't have anything like Headway here.
For myself, if I notice an issue I pick some small part and practise. Like when I couldn't understand people talking, I looked around and noticed the guys that did the sports report at 11 pm on my local radio station had lower voices, which didn't set me off as much - no music behind the talking - and they said the same things over and over again. So I started with that and then worked from there.
Everyone is always going to have some gaps in what they can and can't do, but there is stll quite a bit you can work out for yourself.
I also found playing the free computer games online for kids really useful. I would find one that was a bit hard , but not too much, and play it over and over again until I could figure it out. It helped a lot with my eyes tracking a bit better and also me not being so reactivated by things going on around me - sound can be controlled, as can colour and contrast, for example. I played ones like Cradle of Persia, some hidden object ones, and some time management ones. I went from almost not being able to do it, certainly not finishing them, to being able to. I still use them to keep a bit tuned up.
Also a learning a language ap, like Duolingo, may help. You ahve to speak and listen and get used to the way words sound - yes, in a different language - and I think that helps exercise the bits that need it.
My guess is this issue is fairly common though not everyone seems to have it.
I am at the point now where I can do some simple things but if someone is being aggressive or even just really pushy I will not do so well. Sometimes people have thought I was being a jerk when I kept saying I didn't understand because they really couldn't get I really could not understand them, even when I explained. And some people thought they could just push me around and weren't happy when I just said 'no this isn't working for me, I'l have to call you back" It particularly doesn't go well with manipulate people becasue that stuff doesn't work on me and they seem to feel entitled that it should, and since they don't get what they expected they seem to feel angry over it. (I also write down what I want and am very patient, have no problem saying I need time to think about this or this isn't feeling right to me, I'll have to get back to you - probably a better way there but it gets too convolunted when I try to explain it to others and it doens't tend to happen when someone is helping me phone.)
Leaf100 I got lost in your comment n my mind distracted itself until now. I can relate to the struggles you too suffer with I used to think I was the only one like me until I found Headway a couple of years ago..since then I've been on a personal journey of acceptance of my own hidden BI struggles I struggle to find the pretend me nowaday he's long gone 👍 but I have managed to let him go finally after a lifetime..apologies if Ive gone off track with my comment they require real headwork from me writing one😂👍
Hi ya , I hate making phone calls. Even the thought of calling the doctors fears me with dread as they have 9 options to get through and I never remember which option to pick and by the time I've listened to the options I've forgotten the start. I def avoid talking on the phone as much a possible or make sure my husband is there or makes the call for me.
I can totally relate to your struggle with phone calls after BI I never really got a chance to grow with a normal functional brain at 10 years old my whole life changed in an instant.. thankfully I have no memory of my accident but I've battled on regardless. Phone calls are just one of the many hidden struggles BI Survivors have to deal with day in day out..thankyou for your comment 👍
I'm only 2 1/2 years on from having a rare brain infection so I'm still adjusting to my new normal and coping. We are def stronger than we think but it doesn't near its easy. 😊
I was hit by a car going 30mph back in 1983 all I remember nothing of it I spent 9 days in hospital overnight in intensive care overnight unconscious all this comes from my mum as I have no memory of it. My mum was told by doctors back I shouldn't of survived an impact like I did but that's exactly what I did I SURVIVED..my life since has been let's just say very different to most we are defo stronger than most in society..I'm thankful I've made it this far tbh..your own journey with BI is unique to you n in some ways I've found it to be a gift what we lose we gain in other areas..massive well done to you so far...WARRIOR👍
I don’t think people use the phone to talk so much nowadays, email or messaging seems to be the preferred method of communication, though of course there are times when a phone call needs to be made. As Leaf says, phone calls require multitasking and that can be difficult after brain injury.
Thankyou for yor comment I find emailing and texting is defo easier than speaking on the phone. Multitasking I can't do as it's too much for my mind I become fatigued if I overload my mind even typing comments takes me forever 😄
Yes, when I returned to work for a short time before being pensioned off at age 33, I found I would constantly digress. My psychologist recommended writing down the points I need to make and ensure I tick them off
Sorry to hear you had to stop work at such a young age that must of been easy. I've tried alsorts over the years to try make things easier on a phone writing down bullet points the whole 9 yards to be fair. I'm at a stage of acceptance of this struggle with phonecalls I don't think it will improve after all this time..it is what it is and I can live with it..thankyou for your comment👍
What I find hard is the lack of a real person at the end of the phone. So you have to tell the automated system what you want. If I am tired or having a bad day I slur so it doesn't understand me, drives me insane !! Generally agents are helpful when I explain I might need extra time to take info in etc but sometimes they are impatient and don't have free rein to use their own common sense as they are reading a script.....sigh....
Post TBI phone calls were an absolute nightmare. Early days by the time I was speaking to someone I hadn't a clue if I called them or they called me, who they were or what they wanted...or why I had tried to call them.
It took years of practice, a handsfree phone and a pre printed sheet. Handsfree phone was so I could take key notes which I could then read back to make sure I had got it right. After a while it became second nature and I still use this method (largely successfully) each time I make a call. I only make calls from my desk with my prepared sheet in front of me. If I take a call I tell them to hold on a minute and I go to my desk.
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