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Episode 11

Dating and relationships after a brain injury

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In today's episode, we will be talking about dating and relationships after a brain injury. We've previously spoken about socialising as being part of the idea of love and belonging. But the other side to this is, of course, is romantic relationships and intimacy. We'll be talking to Brooke about his specific experiences around this area and then explore the issues that can arise in terms of change of dynamics in relationships and marriages following a brain injury and provide some helpful hints and tips.

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Ashwini 00:00:22 - 00:01:23

In today's episode, we're going to be talking about dating and relationships. Brooke, I'll be talking to you about your specific experiences around this area, and then we'll explore a little bit more the issues that can arise in terms of change of dynamics in relationships and marriages following a brain injury, as well as providing some helpful hints and tips. Of course, a lot of what we'll be discussing today will be around your specific experiences Brooke, so we do appreciate that this is quite a wide-ranging topic, but we hope that you'll find it useful anyway. 

We've previously talked about socialising as being part of the idea of love and belonging. But the other side to this is of course, is romantic relationships and intimacy. Brooke, why don't you tell us about some of your experiences with relationships and dating after you had your brain injury? When did you feel that you felt able to explore dating again?

Brooke 00:01:23 - 00:03:44

As for that being hospital, I'd been discharged from hospital and everybody was still like coming to see me and I guess my parents were glad to have me home. But I suppose the hysteria of that only lasted a  certain amount of time - eventually I was back in Scarborough, I’d got two support workers, Laura and Tim. Tim got me in to something that I was already into before which was going to the gym, and then so Tim used to take me to the gym and I noticed that I haven't really spoken to a girl in ages. One thing you get a lot of when you come out of hospital or when you've had a big injury is, you get a lot of sympathy and people saying - one thing I used to hate is when people used to say ‘awww’ and people used to say that to me and it makes you feel so… I didn't feel like I was like, worthy anymore and I was just like somebody that somebody felt sorry for. 

And so what Tim did was he got me on something called POF which is Plenty Of Fish and I'm sure people would have heard of it. It was like a free dating site online. I had a couple of dodgy ones in Scarborough and one specific one, and this ties into the disinhibition, I think. When your sat opposite someone, I noticed that she had like, you know when you can smell someone? This makes me sound really awful and I don't want to come across badly, but occasionally you notice if someone has got a bit of bad breath. Afterwards we went and got an ice cream from the Harbor bar. We ate our ice cream and stuff and we ended the night on a snog. Then we arranged to meet next time and it had happened again, and then the third time we met, I thought, I know what I'll do, and this makes me sound really bad, but this was my process of thinking. I thought I know what I'll do, I'll help her out here and I'll buy some chewing gum before we go. I had this thing where I wasn't really, it's disinhibition, that's what it is. You don't think about what you're doing, so I told her that she had bad breath. And I told, you know, it's all right, I've bought you some chewing gum. I gave the chewing gum and she was not best pleased!

Ashwini 00:03:44 – 00:03:47

And in your head, you were thinking we surely she should be thanking you?

Brooke 00:03:47 - 00:03:55

I was expecting a thank you because I thought I was doing a good thing, but I didn't really take into consideration how she'd have felt.

Ashwini 00:03:55 - 00:04:15

It’s obviously classic disinhibition there. 

Before we move on, did you find that by doing it through internet dating, it was almost easier? Because there was that sort of level of removal; you were able to, you know, interact with people in your own time?

Brooke 00:04:15 - 00:04:52

Everybody who’s done internet dating, I mean there's a few success stories, I’ve just been to a wedding a couple of months ago and they met on Tinder. But the vast, vast majority of people who have been involved in internet dating has had a terrible time with it and I guess because it's not texting a real person, you’re texting a profile picture until you actually meet and it turns out that you meet that person and their photo has been covered in filters and what have you. Nine times out of 10 you’re not meeting the person that you were expecting to meet.

Ashwini 00:04:52 - 00:04:54

It's a different type of fake environment, I guess.

Brooke 00:04:54 - 00:05:27

It is yeah, it's like we spoke about hospital being a fake environment - the dating world is certainly a fake environment. Especially seeing as like all the manipulation that you can do with photos and stuff now. And you know, I've probably done it myself. So you get these people who look like Barbie and Ken meeting and they just look absolutely nothing like that. So when you meet initially, the initial emotional you feel is disappointment and that's never a good thing to start on is it?!

Ashwini 00:05:27 - 00:05:47

No, and I suppose you know much like you can curate a photograph, you can curate a profile. There are pros and cons to the whole premise, I guess because you've got time on the one hand to think about your responses; it’s not like being face to face with someone you can choose when to text, choose when to send an email.

Brooke 00:05:47 – 00:06:39

That’s something that's caught me out massively is that, well, particularly why social media was so good for me because even though you're responding quite quickly online, you still got like 10 seconds or so to think of that response and in real life you don't get that. Particularly with me, my brain works slowly and I just found that I easily get overwhelmed, particularly if you go into a bar or something, I found like the lights were low so you’re straining to see and if there's music on you'd have been like, you know, straining to hear them above the music, and there's all these things. And what I sort of likened it to a mobile phone and it's like a mobile phone, your battery life just goes down, down and down.

Ashwini 00:06:38 - 00:06:41

Yeah, it's increased cognitive demand. There’s lots of things going on

Brooke 00:06:41 - 00:06:58

Yeah, all these different things are draining your battery, yeah. So that also affects your ability to have a fluid conversation and appear OK.

Ashwini 00:06:58 - 00:07:03

So you were in Scarborough and then you moved back to Manchester.

Brooke 00:07:03 - 00:07:51

Yeah, it was always my ambition to move back to Manchester. So this is where I'm different, you know, every brain injury is different, isn't it? You've got that saying that if you’ve sees one brain injury then you’ve seen one brain injury, and this is my story. I wasn't in a relationship, you know, I wasn't full-time employed - I was a student, I worked part time at a bar and I loved my life at the time. Ever since then, I've been trying to get back to that person I was then, which was a 24-year-old lad who was a student, which is not a popular position to be in.

Ashwini 00:07:51 - 00:07:56

So, were you trying to almost pick up where you left off?

Brooke 00:07:56 - 00:08:38

Yeah, I was. You know, you look back and you remember those good times but again, like the fake environment, you know, student life is not a real environment, is it? You don't have a normal life, and I suppose I was trying to, all this time I've been trying to get back to that 24 year old student and I suppose that's why I've had difficulty in fitting back in because I was trying to get back to being that 24 year old student and went out and socialised all the time and that's what I saw as my goal to get back to. But of course, during the time everyone else has been finishing their degree, getting a job, carrying on with their career, and I’ve found that I’ve got very little in common with people.

Ashwini 00:08:38 - 00:08:50

So you moved back to Manchester and amongst the various things that you got yourself into, one of them was speed dating.

Brooke 00:08:50 - 00:09:32

The speed dating thing, I’ve actually done that a few times - it's actually quite good and I would recommend it to anyone - even if you’re in a couple, go together!

I think the thing was for me, you get like mini dates, you know 3 minutes. So in my head, I'd rehearsed what I was going to do on this mini date and I'd just exhausted myself putting all my effort into that, and then I remember looking up after the first one or two, so I had another eight people to meet and I remember just being absolutely exhausted and the last eight was just honestly just trying to trying to get through it.

Ashwini 00:09:32 - 00:09:58

I guess it can be very difficult because with brain injury recovery, a lot of it is about pacing yourself, and we've certainly discussed that when talking about fatigue, the need to pace yourself, to take things slowly, give yourself time. But speed dating, of course, is very much the opposite! It's very quick, you've got to have that persona that you want to put across in two minutes, repeatedly.

Brooke 00:09:58 - 00:13:09

Yeah, I and you try not to say the same things and like you can hear you, you’re sat near somebody who you’ve had a previous date with before and you try not to let them hear you saying the same things that you said to them to the other person! But what it was, it was like a massive cognitive drain. And it just exhausted me. I learned the importance of pacing myself there.

Something else that came into play there was my memory problems. A lot of brain injury for me, it's been about trying to fit in again and although people say you should be proud of your brain injury and what have you, it's not something I wanted to - I've always wanted to make it look as if I didn't have a brain injury. 

One of the first dates I went on was to the cinema in Parrs Wood near where I live. I remember we sat in the cinema and I went to the toilet and then I came back into the cinema and I was like ‘Oh my God, where am I sat?’ You’re then trying to look around in this dark room, trying not to look like you've you actually lost yourself but trying to casually find your seat. I remember like, I got into such a panic. I mean, it was dark and everyone was watching the film and you don't want to pace up and down. I remember thinking about just sitting at the front and just watching the rest of the film by myself, but you know, I had this date to get back to! Anyway, luckily I found her!

But that's something that I've taken on. Whenever I'm somewhere and I leave my seat, I always remember where I'm sat. It's happened to me a number of times; it’s happened to me in restaurants, I'd go to the toilet and then you come back out, especially if it’s a big restaurant and you just think ‘Oh my God, where am I sat?’ I mean it was good, this is where our phones could come in - I was with my family at the time and I just rung my mum to come get me. So you do need to take a mental note of where you’re sat, particularly in car parks if you drive - the Trafford Centre is an absolute nightmare and I’ve previously spoken about when I got lost outside John Lewis.

This thing happened to me a couple of weeks ago. I was with a friend that I’ve only met a couple of times on the train like a couple of weeks ago and we were going over to Liverpool and I went to the toilet. I came back out and then you realise on your way back that you haven't remembered where you sat and I'm looking about and  I can't see where I'm sat. I was walking along and then I got to the end of the carriage and I thought, On no, did I actually turn the right way out of the toilet and then just at that moment he shouted me. It’s just the embarrassment factor, and I'm not saying I'm not proud of having a brain injury, I wouldn't say that at all, but it's not something…

Ashwini 00:13:09 - 00:13:10

You don't want to draw attention to it.

Brooke 00:13:10 - 00:13:14

No, you don't want to ask for attention to it no, and I don't think.

Ashwini 00:13:14 - 00:13:32

And I guess that's personal to you, you know, people will approach that differently, and some people will be happy to be, you know, heart on sleeve, cards on the table, this is what it is. Other people might want to keep that back. Everybody is different and there's no right or wrong way.

Brooke 00:13:32 - 00:14:45

That's where that Headway Brain Injury Card can come in useful as well. I remember when I first thought got discharged from hospital, I got a disability rail card. I was on a train and a guard comes along, charged me £50 for a full price ticket because I think my rail card was out of date by about a couple of weeks and my dad went ape **** because and I was like, I remember, because like, I still has this big scar there and I told this guard, and I was like proper panicking, saying ‘I'm sorry, I'm sorry, just really, really sorry’ and I was so shaken up and it was like one of my first outings and he charged me like another £50 because my thing was out of date. I remember I was saying I've just been in hospitals, I’ve been in a coma and he says, yeah I can see you’ve had an injury there and I remember my dad going mental. That could have finished someone off, it could have knocked someone confidence, but I suppose me being disinhibitioned, I didn't really give a **** - that’s the only reason I got through it!

Ashwini 00:14:45 - 00:15:58

From what you've told me about some of your experiences with dating, I guess, there's a lot more that goes in - dating in itself is terrifying. It's you know, it's putting yourself out there, laying yourself open for other people to see whether or not, you know, you are attractive to them, it's terrifying. But I guess, when you mix a brain injury into it, it's also all the additional strategies that you've discussed - taking a note of where you've sat, whereabouts in the restaurant, the cinema you might be, so that you're not leaving your date hanging because you've gone to the toilet and you can't remember where you are, and then them wondering have you done a runner? And you know, the memory issues as well in terms of what have I told this person trying to maintain that, trying to think about, you know it's, I guess a lot of it is also having that insight where you might have certain, I don't really like the word deficits, but perhaps that is or just issues, you know, where you might need some additional support.

Brooke 00:15:58 - 00:16:20

Do you know what it’s always taught me? It’s something I've picked up on, which is a good thing, it's that I always tell the truth. I don't know if it's a Mark Twain quote that if you always tell the truth, you don't have to remember anything. So, I mean, you've got enough going on in your head as it is without trying to remember a story.

Ashwini 00:16:20 - 00:16:47

And the other thing that I was thinking about, and again this comes back to the context of love and belonging, and we've touched on this already that, you know, when you moved to Manchester you were meeting people and at a different stage, I guess, to them. You have also, I think there was another example where you felt that gulf in a way when you went on a date with someone who worked at a prison?

Brooke 00:16:47 - 00:17:57

One of the things that dating did for me was to, it really highlighted how different I was from everyone else in my sort of peer group. I went to meet this girl who was a year older than me, but she was just so much older than me in herself. She worked at Strangeways prison in Manchester. I can't remember what role she did - she wasn't a prison guard, but she was something, but I remember her being just so much, she felt so much older than me - I felt quite like a pathetic child in her presence. I realised that she, on a daily basis, she was dealing with some of the most dangerous prisoners in the UK and I realised that on a daily basis I was having to go to bed up to three times a day so I couldn't even stay awake for the whole day and I was occasionally going to BASIC charity and I was just doing my few hours rehab which in itself exhausted me and I just remember feeling, I guess that's the self-worth thing isn't it, I just remember feeling quite pathetic. 

Ashwini 00:17:57 - 00:17:58

Did you tell her you had a brain injury?

Brooke 00:17:58 - 00:18:43

I think I did, you know. I went through this period, I would tell everyone what had happened because I had this thing, because I did so little in my life on a day to day basis in comparison to somebody that was dealing with the UK's worst prisoners, I would tell them this story - I had been walking down Portland Street in Manchester and I got hit by a car at 50 miles an hour, I'd be in a coma. I did it really because I didn't ever want to sound uninteresting and this was something that always got people's attention. But it was, in hindsight, it was probably too early to say that.

Ashwini 00:18:43 - 00:18:44

Why do you think it was too early?

Brooke 00:18:44 - 00:19:33

I'm not saying don't tell them you've got a brain injury, but I think for it to be the first thing that you say to people, I think it kind of shocked people – again it’s going to that first impressions thing isn't it, like it just shocks people.

I suppose, awareness around brain injury has increased and it’s increasing all the time, but particularly then back in 2013/14, they heard the word brain and people would generally run a mile. I think looking back, what I was doing wrong was I was being overly confident but it was fake confidence so I was like trying to get this story out and that would be the first thing I told them to try and sound interesting, but I just must have sounded a bit crazy.

Ashwini 00:19:33 – 00:19:34

Maybe not crazy, but perhaps a bit full on.

Brooke 00:19:34 – 00:20:32

Full on is a good way of saying it, yeah. And I think I've sent people the other way. There’s quite a few instances I didn't get a second date, and you know, I didn't even necessarily fancy that person, but because they didn't want the second date with me I was like, why not, what’s wrong with me, kind of thing. And then you know, if I did fancy them, I used to take it to heart and I was always wondering what was the right way to go about it and to be honest, I probably still haven't worked out. 

But if anyone is, you know, wanting to do this themselves, everyone is individual aren’t they but the approach I've gone for, or that I go for now is to try and get them to get to know me little bit before I tell them that, I think you do definitely have to tell people.

Ashwini 00:20:32 - 00:20:40

And do you perhaps now try to learn more about them as well before introducing that conversation in about yourself?

Brooke 00:20:40 - 00:21:10

Yeah. Something I watched, it was a brain injury rehabilitation program, and in the brain injury rehabilitation what people tend to do is they tend to talk about themselves a lot. And this brain injury rehabilitation, what they did, they had like, it was a ball and they’re holding the ball and when you've got the ball, you talk about yourself. Then you've got pass it to someone else, so it was trying to encourage you to listen to all the people. Listening is such a big thing.

Ashwini 00:21:10 - 00:21:30 

Yeah. I suppose listening is a big thing and definitely, even absent a brain injury, it's important in a dating scenario. But then you've also got the added factor of remembering what's been said and being able to bring that back into conversation.

Brooke 00:21:30 - 00:21:47

Yeah, that's a concentration thing. Yeah, you don't just ask people a question, you've got to make an effort to listen to people as well, rather than just asking them and then just switching off while they speak and then waiting for your turn to speak.

Ashwini 00:21:47 - 00:21:49

It's again, cognitively demanding.

Brooke 00:21:49 - 00:21:52

Yeah, it’s cognitively demanding, that's what it is.

Ashwini 00:21:52 - 00:22:10

And so now, perhaps your strategy is to leave the conversation about brain injury until a little bit later on. How do people react? Have you had instances where people have wanted to know more? Where they've perhaps then gone and learned about it independently?

Brooke 00:22:10 - 00:22:43

That comes back to everyone being individual, isn't it? Some people have been great about it. Some people have been not. There's times when I've wanted to go on a date this person and people have advised me they have to be honest with them, you know, and if they don't like it, then it's their problem, you don't want to be with them in first place. What I’ve found is that's not really giving people a chance. There's a way to go about things, because I just find that if you tell them in the right context and tell them in the right way, then you know, they might well be open to it.

Ashwini 00:22:43 - 00:22:55

Well, of course, it can be full on, and again that's I guess part of the game of dating, you know, whatever it is when you introduce certain topics, big topics, whatever.

Brooke 00:22:55 - 00:22:56

There's no one size fits all for it is there, because everyone is different.

Ashwini 00:22:56 - 00:23:16

And yeah, unfortunately for some people, the label of brain injury might not be something that they're willing to learn more about or take the time to get to know you with, but that's unfortunately, that’s dating as well, isn't it?

Brooke 00:23:16 - 00:23:17

Yeah it is, yeah.

Ashwini 00:23:17 - 00:26:28

And that I suppose, brings me onto the next topic in this, because up until now we've talked about your specific experiences around dating. But as we said at the beginning, that's personal to you. I'm also mindful that a number of our listeners will be in more established relationships, marriages potentially, or they might be supporting somebody - a spouse, partner, who's had a brain injury, they themselves might have a brain injury and their spouse is supporting them. 

There's so many statistics out there and depending on where you go, those statistics differ, but I think there's a common perception anyway that after a brain injury there's a high chance of a relationship breaking down because the person that was before the injury is not the same person after the injury and we've talked about thar quite a lot in previous episodes, and so it's also thinking about support for those relationships and what can be done. 

I know, certainly, I've put this in place with people I've supported in terms of additional counseling, to mourn the loss of the person that was, and to try and find a way through for the relationship, to support the brain injured person, but also for the non-brain injured party of a relationship to have an outlet to be able to talk, to grieve and to understand. Because at the end of the day, a relationship, it's two halves of a whole. And where something significant like this comes into play, it upsets that balance, and it's about being able to be strong and resilient in order to be able to regain some sense of balance and move forwards. And for some people, that can be done. I have seen it done well, but in other cases, unfortunately it can come to an end.

Thinking about help and advice then for our listeners I guess, again, we can sort of almost split this into two, so from a dating perspective we've talked about the extra strategies that might be involved in terms of preparing yourself for dating, in utilising strategies around memory, around fatigue, which can be really important in order to try and feel confident around it. Because it's difficult enough, you know, without a brain injury. 

Honesty: I thought that was a really good tip, Brooke. Being open and honest, of course, it means that you're not having to remember some fantastical story that you've made up, and it's showing the true self. But obviously, as you say, you know it's different for every situation and every individual as to when you might want to open up about what's happened, about your injury and how it affects you.

Brooke 00:26:28 - 00:26:38

I think it does. One thing I've lost is the ability to be spontaneous and everything is better if I'm prepared for it.

Ashwini 00:26:38 - 00:27:32

Yeah, a lot of it is also shoring up the resources around you: friends, family, people that you trust because as I said, dating is quite difficult, it can be terrifying and it can knock your confidence if you know, if you go on a date and then the other person is not interested for whatever reason which might be completely unconnected to your brain injury. But it's difficult enough, add in the brain injury and we know that a number of people can be prone to more depression as well, so it's important to really prepare and be prepared that not every date is going to be successful, that you're not necessarily going to find the love of your life on that date. It's very difficult, isn't it?

Brooke 00:27:30 - 00:27:58

One thing I was told when I initially wanted to start looking for a partner, I was told, you know, you could meet them anyway, it'll happen. And that’s one thing it doesn't, nothing just happens. You have to put yourself in situations where it's more likely to happen, like if you join a club, it's much more likely to happen at the club where you meet like, you know, 20 people, than it would be if you sat in at home doing nothing, waiting for it to happen.

Ashwini 00:27:58 - 00:30:04

Of course, absolutely putting yourself out there but with shoring up your resources and giving yourself the best possible opportunity.

And then for our listeners who are in relationships, thinking about brain injury specific marriage counseling and brain injury education. And I really can't stress enough the importance of brain injury education because that injury has such a wide impact in so many areas of life and it's important to understand that the way someone acts, the way they behave, isn't their fault, it's as a result of something that they cannot control because of a process in their brain. So it's being able to understand how their brain might work now and understand what sort of strategies need to be used so that you can have a meaningful relationship. 

But I do also strongly advocate for counseling for the non-brain injured individual and I've seen this time and again with people that I support that the focus is on the brain injured individual and you yourself have said this Brooke, you know when you were out of hospital or when you were in hospital and then when you were out of it, everyone was positive. It was all about you, it was that fake environment, but the other spouse/partner can get left behind and that can definitely have an impact on their own self-identity and sense of worth because they may feel that suddenly all they are now is a carer and a supporter and they've lost that sense of themselves. They've lost the person that they fell in love with and so that counseling for them to have an outlet for their grief, for their own personal, for them to work things out on their own and above all, remember that good relationships don't just happen, they take work from both sides.

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