In this episode we discuss the impact of a brain injury on socialising and different things you can do to make this easier.
Ashwini 00:00:25 - 00:02:05
In the last episode, we discussed cognitive problems and briefly touched upon the effects of socialising. I'd like to discuss that with you a little bit more, Brooke, and think about the effects you've experienced since your brain injury and how that's impacted your relationships with your family and your friends.
It's also helpful to remember that when we think about Maslow's Hierarchy of Needs, we've talked about the importance of physiological, talked about safety and security generally, we're now halfway up the pyramid and thinking about the idea of love and belonging and the importance of that to achieving your goals. Friends and family and the interactions that you have with them are really important to the journey. It's probably even more important after brain injury because that support is vital to making sure that you can flourish.
But I think it's perhaps fair to say that there also has to be an acceptance that those relationships will change because as you adjust to the new you, friends and family will also realise that you are different and that the relationship will be different. So it's about adapting and strengthening those relationships. We'll also be looking at how it's possible to forge new relationships as well.
I'd like to talk to you, though, specifically about your experiences Brooke. So talk to us, tell us really about how you found socialising after your injury.
Brooke 00:02:05 -00:05:56
I think the first thing to say is brain injury is an invisible disability and it can be invisible to you as well because you think, particularly I was in my early 20s, and I just thought I couldn't see a difference in myself that I was going to be totally fine. My plan was to come out of hospital and just get back to my normal life.
I was a student at the time, which was a lot of late nights and socialising. But when you are discharged from hospital, you do slowly realise that that's not the case and you come to realise that you as a person have changed and your relationships with other people have changed because essentially it's your brain that's been injured, which makes you you, and you are actually a different person, whether you like to admit it or not.
The first time I noticed that something was wrong - I guess, all that time spent in hospital, a lot of it was planning my triumphant return to the social world, and I think that's worth noting actually, it's something that a lot of people have, everybody is in different situations and everyone is in different scenarios when they have a head injury aren't they. You know, a lot of people have a normal life, a job, family, and I don't suppose I had a normal life - I was a student at the time and I worked, but it wasn't at normal hours, I worked in a bar and stuff, and that was a big part of my life. That's not necessarily a normal life, but that was the life that I wanted to get back to, and I used to sit, and I still remember sitting in the hospital thinking how I was going to get back to normal life. I built this image up of how I was going to make this return, how I was going to be this great charismatic guy, and I was going to fit straight back in.
But the first example I can think of was it was arranged that I was going to meet up with some friends again; I think I was still in hospital at the time, but I used to think that being in hospital was like prison - I used to get day release. They used to let me out some days, like weekends and stuff, just to be at home with my family and to get a bit back to normal life.
I arranged to meet up with some friends - I used to work on the bar on Deansgate Locks, and it was just a Tuesday afternoon, the quietest time of the week for the bar and the music was on as low as possible, I guess that's a situation where everybody else would think 'this is a perfect scenario for him because it's going to be nice and quiet, it's going to be easy'. But what actually happened was I was sat around the table and obviously I'd been through this massive thing, everybody had not seen him for a while, so a few people wanted to ask me questions about it. So I was getting a few people asking me at once, and even though the bar was quiet, the music was on low, there were still other people and there was still the music on low and that wasn't something that I was used to in a quiet hospital. So that in itself became overwhelming, and several people talking to me at once, that's when I came, what's the word, social stimulation or something. That's the first time I became aware of that and how it was, how it massively had a negative impact on me.
Ashwini 00:05:56 - 00:05:59
Yes, and did that then change your views on wanting to socialise or how you were going to socialise?
Brooke 00:06:06 - 00:06:29
I suppose there's a big element of denial as well. Obviously, it did have a massive effect on me, but in my head, I just put it down to a one-off and next time I would be this charismatic person, and then it was the next time, then it was the next time, and when it happened a few times, you start to realise things that things have changed.
Ashwini 00:06:29 - 00:06:43
Did it take you a while to accept that things had changed and that you couldn't necessarily be the person that you built yourself up to be in your head - this charismatic person that would come in for his triumphant return?
Brooke 00:06:43 - 00:06:58
I just kept constantly making up to myself that it would, that this is just a one-off and it will be alright next time. But when it's like the 10th one-off, it's going to be a little bit obvious that something has changed.
Ashwini 00:06:58 - 00:07:00
And was that hard for you to accept?
Brooke 00:07:00 - 00:07:26
I think emotionally as well as physically, yes. Physically, you have to make changes so that you can get through those times and in having to do so, I don't know, it's like your pride, isn't it? You want to build yourself up in your head to be this person and then realise that you're not.
Ashwini 00:07:26 - 00:07:54
I think it can probably impact on your idea of your self-identity because you remember what you were like before the accident. You were probably, as a student, you were used to going out in big groups and being the life and soul of the party and going out drinking at all hours, and so on and then from having had that to going to not being able to sit in a bar on a Tuesday afternoon with quiet music.
Brooke 00:07:54 - 00:08:12
I wouldn't ever claim to have been the life and soul of the party! But I could certainly hack a conversation with several people under loud music. And the fact that I couldn't hack a conversation with two or three people under extremely quiet music was definitely a jolt of the system.
Ashwini 00:08:12 - 00:08:39
So after those experiences where you kept thinking 'oh, this is a one-off, next time, next time' and then you got to a point where it was quite a few of these next times, did you get to a point where you then felt like you wanted to withdraw; that you didn't want to socialise with people?
Brooke 00:08:32 - 00:09:52
Yes and no, really. Yes, because you become scared of failure and you don't want to be a let down to people. And then there's that fighter in you, isn't there? You want to fight against it. And also denial; it takes you a long time to accept you have changed. I kept making excuses that it was always a one-off. It probably took me, it might even have been years, to accept that because I think I just didn't want to admit it.
As well, you don't want to be a hindrance to anyone else. You don't want to be seen to hold people back. You want to contribute to the situation. I guess the big thing for me was, I didn't want to be seen as being boring and then every time the socialising was such a stress that I would tend to avoid it rather than risk being boring - I would just sit this one out. Then you make excuses to sit this one out, and then you can see how it can be quite easy to become isolated.
Ashwini 00:09:52 - 00:09:53
And did that impact on your mental health as well?
Brooke 00:09:53 - 00:10:11
Yes, absolutely it did. You don't want to be seen as somebody who brings the situation down - you'd rather just not be there at all.
Ashwini 00:10:11 - 00:10:13
But then there's isolation.
Brooke 00:10:13 - 00:10:40
Yes, and the isolation, while it might be a comfort at first that you can stay at home and you don't have to go through that, but you do that a few times and then you've got good friends that will ask you to come out. But then, after a while, if you refuse a situation five times, then they're going to stop asking because they think that's going to be the best thing for you, that's the kindest thing to do if you don't want to do that.
Ashwini 00:10:40 - 00:10:50
Did you have any conversations with your friends about how you were feeling and how you were struggling in certain situations?
Brooke 00:10:50 - 00:11:17
I don't think I ever did; I don't think I ever had that conversation with anyone because I didn't really understand what was happening, so I couldn't articulate how I was feeling and how that impacted social situations. I think a lot of the thing was I just didn't understand it, so I just used to avoid it. Obviously, the knock-on effect of that was the isolation.
Ashwini 00:11:17 - 00:11:40
Yes, and the occasions that you did go out or tried to go out and struggled, did you find that, for example, that afterwards, let's say you went on a Tuesday afternoon or something and the next day, did you find that you were even more fatigued for the effort that was put into trying to be present?
Brooke 00:11:40 - 00:12:39
Yeah, there's something that you have to learn as well, which is the knock-on effect. So say if you do something particularly energetic one day, that will have a knock-on effect for the next day or even 2-3 days. But the thing is, coupled up with the memory problems, and you wake up the next day, and you forget about that - you're just really tired and you don't really know why. That's why it's good to write things down to keep a diary and if you can be prepared for that.
Something I've said to myself several times in the past is that I'm going to write myself a post-it at the side of my bed saying 'you're going to be tired today' and to expect to be tired, but you obviously forget to write that post-it note. I mean, still 15 years on, I don't do it, and it still happens to me!
Ashwini 00:12:39 - 00:12:49
And I suppose you also forget that going out takes that little bit more effort, and the next time you're invited, and you decide to go, you don't prepare yourself.
Brooke 00:12:49 – 00:13:11
Yes, and in terms of planning your week, if you do something on the night or the night before, then make sure you don't have anything planned for the next day or at least the morning of the next day. The fatigue, you know, we spoke about fatigue in the previous episode, but it does have a massive knock-on effect.
Ashwini 00:13:11 - 00:13:40
Absolutely. And you talked about in those earlier episodes of socialising with friends; you had lots of people asking you lots of questions and struggling with that. How did that make you feel? What was going on? Were you struggling to follow conversations? Was it just too much stimulation?
Brooke 00:13:40 - 00:14:16
I think a bit of both. I've learned previously from reading that it's called 'the swimming pool effect'. If you can imagine, and I've not gone to the swimming pool for a while, but I remember going when I was younger, and it's like there's a lot of people in there shouting and there are no soft furnishings to absorb sound, it's just all hard surfaces, and it's very echoey, and that's a bit like in your head and it can become quite, just overwhelming.
Ashwini 00:14:16 - 00:14:41
Quite disorientating, I imagine.
And what about the effects of alcohol? As a student, your natural way of socialising, I guess, was to go out drinking. Did you find that socialising with alcohol was perhaps more difficult, harder, worse after your brain injury?
Brooke 00:14:41 - 00:16:27
As a young person as well, yeah, alcohol was a big part of my life. It just has an effect times ten, really. It's one of those situations where you try to explain it to people that alcohol makes me feel awful, but then everyone makes a joke saying yeah, it makes me feel awful too, especially the next morning.
Alcohol, especially with trying to keep track of things, what it does, it's a depressant, isn't it, so it dulls the senses, so especially trying to speak to a few different people at once, where before it could have made you more confident, it made me absolutely less confident.
The thing to warn people about with consuming alcohol after a brain injury is that it makes you massively vulnerable. Brain injury can make you look drunk as well. I remember trying to, because you try and socialise, try to get back to your normal life, but you go out and you're looking like you're enjoying it. But in actual fact, you're absolutely hating it, but you're just kind of being there. I was there quite a few times because I thought I should be there, and I remember going to a bar in Scarborough and I'd not had anything to drink, but the doorman wouldn't let me in because I was swaying a bit because I had a brain injury. He wouldn't let me in because he thought I was drunk, but in fact, I actually wasn't drunk, but then you don't have the conversational skills to speak up and plead your case.
Ashwini 00:16:27 - 00:17:30
Just while thinking about that, I don't know if you're aware of Headway? They have their brain injury card now because as like yourself, many other people with brain injuries struggle and can sometimes appear intoxicated when they're not - they might be swaying, they might have slurred speech, they might not be able to focus, and those are the sorts of things that you could also associate with somebody who's under the influence. But with a brain injury card, you can specify on the card the things that you struggle with, so it might be that my speech is slurred, and it's a way of telling people that I'm not acting this way because I'm drunk but because I have an injury, so not necessarily just for bars in other situations as well. But it's just handy to know about that.
Brooke 00:17:30 - 00:18:24
I think any situation with a brain injury card – I mean, I've got one, I don't think I've actually used it, but it's really nice to have in my wallet. I'm 15 years soon past my injury, but certainly, there's been plenty of times that I would have liked that and that, and it's something official to pull out. It's not just saying 'I've got this brain injury' because particularly when you're not quite as articulate as you were, and you can't really voice your opinion properly, particularly when you get stressed as well. When you get stressed, your brain kind of grinds to a halt and the more stressed you are, the less you can speak, and that's when that will come in extremely handy.
Ashwini 00:18:24 - 00:18:50
Thinking about some of the other impacts of brain injury on socialising and I think we've touched on this before in another episode about the rigidity of thinking and taking things quite literally. Talk to us about the fancy dress party you went to.
Brooke 00:18:50 - 00:21:22
The fancy dress party, so that's something I've mentioned before in writing. My friend, Gareth, I think it was his 25th birthday, and it was a fancy dress party and the theme was G. So he was a gangster rapper, my mate Danny was Graham Gooch, the cricketer, my mate Graham was a German who had the lederhosen and a mullet, and I was a Gnome!
My sister is a makeup artist and so any fancy dress party I've been to, I've always had really good makeup. My dad had made me a piece of wood, a string with a little fish on the end and it was like a fishing rod like a garden gnome would have. I walked in, and I'll put a picture on the website for this; I'd come in to see my friends and everybody saw me burst out laughing, and I remember thinking, and obviously, they were laughing because it was a funny costume and everyone was laughing at each other, I just remember being quite hurt by it; I thought everybody was laughing at me, but I mean obviously they were laughing at me because it was a costume, wasn't it, but I just didn't get the joke. I took it really literally.
Getting back my sense of humour and learning to take a joke has been actually a big thing for me. The first example I can think of was actually in the hospital. I had my phone and a big thing at the time was sending loads of different jokes to people, and one of my mates sent me a joke. I think the joke said somebody they knew was selling venison, and it was like I don't know, for instance, £15 a kilo. Do you think that's deer? And the joke was venison being deer. And just to prove that nobody else got this joke either, I think there were about four guys in my ward, and I had a bit of a discussion going of whether £15 for a kilo of venison was, in fact, expensive or not. So I gave him a deadpan straight answer, we thought it was all right, and obviously, to him, it was a joke, and I didn't get it.
Ashwini 00:21:19 - 00:21:31
Literally, oh deer!
Has that gotten better over time? Are you able to understand jokes and not take things as literally?
Brooke 00:21:31 - 00:21:43
I think it's gotten better. Yeah, it's obviously gotten better. Everything gets better, but it's probably not perfect. You know, I'd say it still affects me - it comes down to speed of thinking, doesn't it?
Ashwini 00:21:43 - 00:21:56
Yeah, definitely. And what about forging new relationships, making new friendships, or even just engaging in small talk with people. How have you found that?
Brooke 00:21:56 - 00:25:10
Well, I'm someone, like all the time when I was in the hospital and when I went back to Scarborough for a few years, I always wanted to move back to Manchester, and I always thought I'd make a really good go of it. To be honest, I've been quite brave in some aspects. Like I've been, for instance, into town on my own to the Livingroom on Deansgate and I've been speed dating. I've been speed dating a few times!
I've got this thing where I throw myself into uncomfortable situations and it's to try and get out of my comfort zone. That's probably what public speaking is about because that's not something I would want to do at first, either.
But I'm good at forcing myself into situations. With the speed dating, to anyone who's never done it, basically, there's a series of tables and let's say ten different girls, and you'd move around, you'd have three minutes, you have this little date for three minutes, and then you'd move on to the next. And I suppose I went to the first two really enthusiastic, and then after the first two, my energy had all totally burned out. I remember this moment looking up and seeing the rest of the room and there was like another eight more dates to go on, and I thought, Oh my God, I can't be doing with this!
But I do throw myself into situations but making small talk, I suppose small talk is alright, but I think one thing that got me was that I find I have to plan for little conversations. There was a time when I joined the gym and I used to practice talking to everyone. So I am quite confident, but I'm confident with no substance! I used to go in, I used to smile, and I used to have a chat with the person on reception and one thing that he always used to stump me with was, 'What have you been up to the weekend?' and I used to have this visualisation that I'd just look back into my memory and it would just be completely empty.
I can't remember things off the top of my head. If somebody prompts me, for instance, I think there was even the time I did a wing walk, when you're on the top of the plane. I'd done that on Saturday and then I'd been into this gym on the Tuesday. He said, 'What have you been up to at the weekend?', just small talk, and I couldn't remember and I'd just made some excuse instead and said I'd done something. I'd actually done this wing walk, but obviously, it was there in my memory, but you need somebody to prompt you – I need somebody to push and prompt me of that memory. So if they said, do you remember that wing walk, I'd be able to talk about it for 10 minutes, but just from cold asking me what I've done and I couldn't remember.
Ashwini 00:25:10 - 00:25:20
You've mentioned planning and practicing discussions. Do you plan out before you go to a situation where you might have to engage in small talk?
Brooke 00:25:20 - 00:25:53
I say I do, but I don't due to the memory and the organisational problems that I have! But on a good day, yeah, occasionally I do. Whenever I get asked to do something or a particular date, I'll try and stick it in my diary so I can then have a look back over my calendar for the previous week; look what I've been up to the previous week and it would freshen my memory and I could have that conversation, that small talk conversation. Yeah, I think preparation is so important. I think when you've got a brain injury - you have to be prepared for any situation you can.
Ashwini 00:25:53 - 00:28:39
That's a really good tip.
Thinking about help and advice for our listeners, especially those who might be thinking about socialising after their brain injury and getting them prepared for the changes that they might experience. I suppose some tips could be to think about how to socialise and accept that it will be different. So rather than just trying to go back to what you did before, finding somewhere quieter to meet, somewhere say I don't know at home or in a cafe rather than in a busy pub and thinking about also the time of day so not doing it in the evening when there are lots of people around but perhaps earlier in the day when it's not as busy.
You said that you didn't really talk to your friends and family at the time because you yourself struggled to articulate what was going on or understand it, but I suppose we could encourage our listeners to really have those open discussions with their friends and family about what they're experiencing, how they're feeling, what they're struggling with, and to make them understand that it might not be the best thing to try and go out for an evening meal in a busy pub, but something a bit quieter with a smaller group.
Definitely keeping an eye on alcohol consumption. You talked about how it can make you quite vulnerable and can be quite a significant depressant and we know that when someone has a brain injury, these sorts of substances can have much more of an effect on someone, so definitely trying to keep an eye on it. Don't try to match everybody; try as best you can to know your limits and stick to them.
I think it's important to plan or try to plan ahead. If you know you're going to go out, have a nap, make sure you're well-rested. We've talked about this obviously in the episode dealing with fatigue, but you know it can't be overstated, really, the importance of rest.
And coming back to the idea of knowing your limits, just knowing what you can and can't tolerate and being prepared to say, you know I've had enough, I'm tired, I need to go home - rather than just trying to be there, like you said just being there because you feel you have to be.
Brooke 00:28:39 - 00:29:24
I think any situation you go into, make sure you've got an exit plan as well, so you don't find yourself in a bar where you might be stuck there and worried, full of anxiety about how you're going to get home, how long you going be there, how long you're going to be exposed to this for. I think the best thing to do, talking from experience, and there's no there's no substitute for experience as well, but I think I've got to try to be the best version of yourself that you can. You don't want to be an exhausted version of yourself - although you might be there for longer, you're not going to be…
Ashwini 00:29:24 - 00:29:26
You're there, but you're not present.
Brooke 00:29:26 – 00:29:47
Yes. You don't want to be there, and I don't think you're going to be adding much to the situation – all you're going to be is just there.
And do things in smaller groups, smaller timescales as well - it's better to be a much better version of yourself than to come…
Ashwini 00:29:47 - 00:29:48
Trying to do everything.
Brooke 00:29:48 - 00:29:48
Yeah, trying to do too many things at once.
Ashwini 00:29:48 – 00:29:49
Yes, too many people. And I suppose you could share that exit plan, if you like, with a couple of people that you feel you trust and you feel able to talk to.
Brooke 00:29:49 - 00:30:16
Yeah, and another thing as well is, if you're going out drinking, there's going to be people who say I'll look after you, don't worry about it, you'll be fine. But then don't forget if they're having alcohol, they're going to change after a couple of pints, so aware of that.
Ashwini 00:30:16 - 00:30:44
And I think the final thing which we touched on just before was planning ahead a little bit as well. Being prepared for that small talk if you're asked questions out the blue - however you do it; whether you read your diary beforehand, whether you have a post-it note with some little prompts on so that if somebody asks you what have you done at the weekend, you've got a stock answer ready.
Brooke 00:30:44 - 00:30:51
Yeah, definitely. That's a theme that runs through everything, I think; be prepared for stuff.
Ashwini 00:30:51 - 00:30:54
Be prepared, be well-rested, be the best version of yourself.
Brooke 00:30:54 Speaker 3
Yeah, there you go, that's the title there!
Ashwini 00:30:57 - 00:31:07
Thank you very much.