Some of the people we spoke to said that their relationships were the most important thing to them, even more so than their recovery. In some cases, people felt their relationships had been strengthened through their experiences. Other relationships ended, sometimes through the challenges created by the injury, or because people’s priorities changed. The importance of working at relationships was emphasised by some.
DJ said he and his wife, Amy, married for life. They have conversations about and work on their...
DJ said he and his wife, Amy, married for life. They have conversations about and work on their...
Age at interview: 69
Sex: Male
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Because to us when we got married we were married for life and that’s all there is to it. And so now it’s a matter of figuring out how to make it work and not every marriage has that. You know, they, they seem to think that there’s an escape clause somewhere, but we’ve never had that and, you know, we set down certain rules within the scope of our marriage to make sure that it never happens.
So when the brain injury comes, you know, to us it’s not any different than one of us being sick and the other one filling in for what they have to do until that time lapses. Because as I say, most people, number one, they can’t stand the change in the person, because there’s a very definite change, especially in any kind of brain injury, people have been operated on, or have suddenly developed a tumour or that type of thing. There’s an absolute change in the personality of the person. And so the person you married is not the person you have. And because you’re not, there’s an attitude of well I can get out of this, or you get so exasperated that you need to get out of this or you think you need to get out of it, because you can’t handle it. It destroys marriages. We just didn’t have that, you know, so we just, we had to learn how to get over the obstacles. I would have to think this bothers her. She can’t do that, she used to do it, she can’t do it now, what she’s doing is not, is not appropriate, like one time when her behaviour has not been well, so we have needed to discuss that, and you know, how do I discuss it? You know, in a manner that, that doesn’t disturb our relationship, knowing that that she’s, you know, and she’s no different to most of us. I mean most of us, somebody tells us there’s something wrong with us, our first thing is no it’s not I’m perfect, you know. So you have to learn how to do that, or learn how to come back to the situation sometimes two or three times until you get to this point where it’s recognisable and then we can do something about it. So that, you know, we survived because we had no choice but to survive and as I said I think a lot of people just have this feeling that they can do whatever they have to do if they can’t survive in the situation they are in. But we all survive situations. No matter how bad things are, unless you’re dead, its survivable, and the only people that don’t, the only people that don’t survive, or when other people don’t get up and drag in, that’s very simple.
Relationships between people who had life-changing injuries and their partners were often described as mutually supportive. They said they did everything together and helped each other. Some people said their partners were instrumental in their recovery, which, they acknowledged, could be difficult. People often depended on partners for emotional support and sometimes for physical care, and some needed them to be supportive and to give them hope throughout their recovery.
Partners becoming carers could have implications for relationships. Rob said his wife became more like a mother to him. Simon A said that he was demanding after his injury and caring for him put a great strain on his relationship with his wife. Dealing with some of the symptoms of injury, such as angry outbursts, unreasonable demands or witnessing epileptic fits, could be difficult for partners. It could also be hard for people to see their partners struggle. Younger people sometimes felt it was better for their partners to look after them rather than their parents or strangers. Sam said he preferred to be looked after by his girlfriend rather than his parents because that would have felt like he regressed to being a child again. Sometimes people and their partners decided to employ paid carers because they wanted to retain the relationship they had.
It was important for Nick Z and his wife to keep their relationship as normal as possible, so he...
It was important for Nick Z and his wife to keep their relationship as normal as possible, so he...
Age at interview: 49
Sex: Male
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My wife is my wife. She’s not my carer or my GP. And I think we made a very conscious decision to have it that way. And I think it’s certainly for my relationship, trying to retain as much as you can of the normal relationship. Certainly with my wife I think it’s been very important to do that. So no, I have somebody who’s my GP. And my wife does not get involved with my care, especially not my bowel or my bladder management.
And why is that?
Because I think… well first of all she doesn’t want to. I mean it’s not very pleasant. And I think it’s… she doesn’t want her relationship to be one whereby I am dependent on her, and she feels responsible for looking after me 24 hours a day, which I think is the way both of us prefer it.
Having a life-changing injury could create problems in relationships. Some said they had arguments with partners and one man with brain injury felt his colleagues at work were more understanding than his wife. The wife (Interview 24) of a man who had a brain injury said it was important for partners to be tolerant and understanding.
Sometimes relationships with partners ended after injury, as they wanted different things, or it was difficult to adapt to the changes that serious injuries cause. A man with brain injury (Interview 7) said he was relieved when his relationship ended as he was “the number one priority now”. His ex wanted children, but he felt it was important for him to focus on his recovery. People sometimes felt their partners needed to grieve for the person they’d lost and accept that things were different now. They often said they wanted their ex-partners to be happy.
Simon B’s relationship broke up a year after his injury. He said his girlfriend probably thought...
Simon B’s relationship broke up a year after his injury. He said his girlfriend probably thought...
Age at interview: 42
Sex: Male
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As many people split up as stay together in my circumstance. I was 25 years old and we split up about a year or so after my accident. Very young. Very screwed up at the time because of it. Kind of glad now that we did. But probably not at the time. Obviously at the time it was like oh my God. What the hell am I going to do? Never going to have a girlfriend. So yeah. Good relationships get stronger and better out of it, and relationships that clearly have fault lines before it will probably split up. And I don’t think there’s any one rule that says oh yes, you’ll stay together, and no you won’t. I think it’s very much based on your own individual relationship. And, at the age of 25, I suppose she probably didn’t see herself sticking by me, because she probably also thought that I was going to be as I was then always. And I clearly am not that person I was one, two years post injury. So, on reflection she probably made a good call because I was probably a bit of a mess one or two years post injury.
In the long term she probably made a bad choice because I’ve gone on to sort myself out and be far more capable and independent and get my life back. I kind of know the answer to that, because, stuff I don’t want to talk about, but I know I have gone on to bigger and better things and I have had many girlfriends since, so … And also those girlfriends that have been with me post-injury only know me as I am now. So in some ways it’s easier for them, because they accept me up front for what I am. So yeah, so don’t rule out relationships. That’s for sure.
Jamie is glad his ex-girlfriend is happy with someone new. He did not want her to have to look...
Jamie is glad his ex-girlfriend is happy with someone new. He did not want her to have to look...
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And Jamie at the time of your injury you weren’t living here were you?
No.
No okay so how did you go about finding this place?
Well darling, basically, my ex-girlfriend who I was going to marry basically has got married to another guy who I played pool with and who was supposedly my best friend. But darling no worries. They got married now, that’s fine.
Okay. And so your ex or your girlfriend at the time...
I am pleased.
You are pleased.
Do you know why?
Why.
For her to remarry that’s better, far better than looking after me.
Why do you say that?
Why do you think?
I don’t know.
Well I loved her so much that I wouldn’t want her to go through too much by looking after me and darling her brilliant Dad bought her a new flat which could happily have a, which was happily large enough for the wheelchair to go in.
People whose relationships ended after injury, or were single at the time of injury, could worry about finding a new partner. This was often unfounded as people went on to establish new long and short-term relationships, and sometimes they got back together with ex-partners. In some ways, relationships that began after injury avoided the tension between the change in the person before and after injury. New partners could be more accepting. As a woman (Interview 24) who met her husband after his brain injury said, “I know him as he is now”.
Dating was an important part of Sam’s identity before his injury. Initially he worried about it,...
Dating was an important part of Sam’s identity before his injury. Initially he worried about it,...
Age at interview: 29
Sex: Male
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I was always quite forward and assertive with women in the past. And I was like, and I think all my friends were concerned as well, because it was like quite a big part of my identity, that, you know, what’s going to happen and you know, that’s all kind of, that’s not going to happen anymore.
But like I think the first time I went out, I was talking to, I’d broken up with a girl I got back together with, some girl came past and just dropped her number written on something, into my lap. I was so happy, because it was just like, the feeling I was getting back what I’d kind of lost. It was just that it wasn’t necessarily all over. And then it just kind of turns out that you know, I think women are nicer than men basically. And I think it’s going to be, I don’t know, I can only speak from my own experience but it’s probably harder for a girl in that situation. But then there are lovely men out there as well. But I don’t know, I still, I find that once you know somebody and once you’re direct, what people find attractive is just assertiveness and confidence and if you, if you’re direct and you’re not like trying to protect yourself, things go for you. I don’t know and I don’t know what it is. I find that most people, once I know them, a lot of them, they all tend to say things like, “I don’t even really think of you in a wheelchair.”
You know, this girl I’m seeing who lives round the corner. She’s, one day I fell out of my wheelchair because I was coming out of an alley and this woman came from behind the corner and I tried to not run her over, and as a result I went over. I was so pissed off. I was just sitting on the ground going, “Fuck. Cunt. Fuck.” And she was like, “I never think of you in a wheelchair.
Often like, you know, I see people outside and think is that Sam like walking, walking along?” And so I think if you really engage someone, you know, and they find you, your looks and personality attractive, I don’t think it really needs to hold you back you know.
She met her husband after his brain injury and said they have good and bad times together.
She met her husband after his brain injury and said they have good and bad times together.
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But, at the same time, he’s still left with lots of problems, which sometimes is hard to cope with. It’s a good job I love him very much, otherwise it would be, you know, it would be too hard. But he suffers with like anger problems. He gets very frustrated, so he gets angry quick. His tolerance levels on anybody, but especially on me, obviously because I’m with him so much, his tolerance levels aren’t very good. So things irritate [husband’s name] very easily. But that’s not just [husband’s name], that’s the brain injury. So I have to be very tolerant, very understanding. Sometimes I’m not. You know, I’m only human. Sometimes, you know, we argue because of things but we settle it very easily and you know, yes, that’s it.
I can’t see that getting any better, unless they changed his medication and something else suited him better. But, like I said, it’s not always easy, but we have very, very good times as well as bad times.
Okay. What sort of a role does brain injury play in your marriage?
I just think it’s not at the forefront, but it’s always there. It’s always there in the back of the mind. We try and make our lives as normal as possible. We don’t want to dwell on the fact that he has brain injury. Like I said, [husband’s name] is coping very, very well. He’s doing really good at the moment. And so we try and live our lives day-to-day. Obviously there’s things coming in, like you know, money worries, and things like that, but people without brain injury still has these money worries and things. So yeah, we try, we try and keep it on back burner, as it is, you know, sort of and try and make our life as well as we can, you know. As good as we can.
People met new partners in different ways. Jane used internet dating, but stopped when she realised the effects of her brain injury made it difficult for her to keep up with the messages she was sent. She thought that by living in London she was likely to meet lots of people anyway. Bridget also met her current partner online.
Bridget’s partner was killed in the accident in which she sustained her brain injury. When she...
Bridget’s partner was killed in the accident in which she sustained her brain injury. When she...
Age at interview: 56
Sex: Female
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I would say on the relationship thing. I mean my partner was killed. I very much loved him. We were going to live together for the rest of our lives and everything. And I think it took me a long time to, I was at an age where I knew all my friends. Had met all the men that were likely and all that. And I decided to do internet dating because I think I wanted to meet somebody. I didn’t know if I wanted to live with anybody again, but I certainly wanted to meet somebody and there wasn’t anybody out there. And I just think don’t be frightened of internet dating. If you work at it, if you do it well, you protect yourself, don’t give any personal information out until you know you’re ready for it, you, you know, you can meet somebody and life can be… I mean when you reach your mid 30s all your friends are married with they’ve got young children. You know, what, yes, what do you do about it? Anyway I’d say don’t be frightened about internet dating as long as you take care.
When starting new relationships, people varied in how much they said they wanted to discuss their injuries. Those who discussed them said they were such an important part of their lives they couldn’t ignore or hide them. But people could be less keen to “share a whole medical background with a new person straightaway” in case it was off-putting. Bridget did not disclose her brain injury to her partner until they had met six times. She said “I want to be liked for who I am”.
Sometimes people didn’t know what they wanted out of a relationship and they thought it was important to wait until they were ready to start new relationships. For Wesley this meant getting his own place. He lives with his mum and thought this would be a turn off for most women.
People’s self-confidence was often affected by injury and they felt unready to start dating again. Self-confidence and being able to communicate well with your partner were seen as important in relationships.
Simon B said having confidence and communication make relationships great, and wheelchairs...
Simon B said having confidence and communication make relationships great, and wheelchairs...
Age at interview: 42
Sex: Male
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Is there anything else you want to talk about in terms of relationships?
It’s a really sensitive subject for a lot of people, and it all comes back to confidence. And you don’t have any confidence when you acquire a disability. It’s completely shattered and it’s disappeared and gone. But you can get it back but you need, you need to form a relationship with somebody that you can openly talk to and communicate with. If you can have kind of complete openness then I’ve got plenty of my mates that are in relationships. I’ve just come out of one after six years. But their relationships are just as strong, just as solid as an able-bodied person’s relationship. But you do need to be with someone that can talk. And talk through all the complexities that you have as a disabled person.
And if you can do that then you’ll have a great relationship. Chair becomes in some ways irrelevant. But if you can’t talk about stuff your relationship is just doomed, it’s doomed from the outset, because you’ll conceal things that need to be discussed. And you can go on to a full life if you do. I know plenty of people in 20, 30 year relationships and chair users. So… I think it’s harder, I think it’s more complicated and you need a more understanding other half, but it can be done. I’ve seen it being done, so I know it’s possible. So yeah, just bear with it. Things aren’t always going to be as they are at this particular moment when you’re first injured. Things do get better. Things do adjust, and you get your confidence back.
Louise can't open up fully to her new partner, but is trying. She has pushed herself to become...
Louise can't open up fully to her new partner, but is trying. She has pushed herself to become...
Age at interview: 31
Sex: Female
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Quite early on did you let him know the full extent of your scars?
Yeah, definitely. I’m quite an open person anyway, and with my experience so far, the quicker you delve into the problem, the easier it is to get out of it. So if you’re feeling self conscious and not wanting to talk about things if you turn that around as soon as possible, then things will become much easier. But I have to say he’s always wanted me to open up about it, and I have to say I haven’t really opened up to him about it yet.
Why is that?
I don’t know. I think it’s one reason why I said I wanted to go back and do counselling because I’ve not spoken about what happened in hospital.
I think it’s difficult. I’ve pushed myself through a lot of barriers. I don’t think everyone’s quite that willing to do that. So I’m not, what’s easy for me is not easy for the next person. And you have to think about their situation. I mean only do what’s comfortable, but the more open you’re able to be verbally with people and the more you’re able to talk about what you went through, the better you’re going to feel. And the more you’ll understand yourself. If you don’t share those finer details everything’s going to be so slowed down. They’ll be sticking points unless you can open up about it.
For more see 'Support after aquired disability from carers and helpers and helpers'.
Last reviewed October 2015.
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