A-Z

Life-changing injuries

Messages to other survivors, carers and professionals

 
To other people with life-changing injuries
We asked people if they had any messages for other people who had life-changing injuries, especially those who are relatively newly injured. Reflecting on their own experience, some said that in the early days after injury they would not have wanted other people telling them everything was going to be ok.
 

Immediately after he was injured, Rob didn’t want any pity. He will never get his sight back, so...

Immediately after he was injured, Rob didn’t want any pity. He will never get his sight back, so...

Age at interview: 24
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
If you could give a message to people who’ve recently lost their sight, what would you say to them?
 
[long pause]
 
Cor! That’s a tough question… That’s a real tough question.
 
Why is it tough?
 
Because when I lost my sight, the last thing I wanted to hear from anyone was you know you’re going to be alright. You know, like you know. It’s going to be all right. Like everything’s going to be, like everything’s going to fine like, you’ve still got everything, if you know what I mean.
It’s the last thing I wanted to hear from people. I don’t know. I didn’t want anyone’s pity. I didn’t want anyone to feel sorry for me and... It’s tough to, I don’t know, sort of give advice on something like that. Even though I’ve been through this, and I know, I know some of the feelings they’ll be feeling I won’t know, I won’t know everything these guys are feeling like.
 
Maybe if we think about it in a different way. But, I suppose, how would you sum up your experience maybe?
 

Yeah. You know, I’ve lost my sight and it’s not an option for me that I’m getting sight back; I know I’m not getting my sight back. So I can either throw in the towel and be miserable or I can get up, I can be motivated. I can do what makes me happy and I can still seize life. I can take every opportunity I need to take and you know, be happy where it’s possible for me to be happy. I mean it’s still life and I’m still going to have the usual ups and downs that life brings, but, you know, I’m alive and happy to be here. And I appreciate being alive. 

After injury, life is difficult and may not be the same as before, but things improve and people adjust to how things are now. As one man who had a brain injury (Interview 07) said, “One thing that always kept me going was knowing that one day things would be better”. People often said that recovery from a life-changing injury is not a quick process. It will be really hard at first, and people should be patient and take one day at time.
 

Although his injury radically altered his life, Nick describes how it is improving.

Although his injury radically altered his life, Nick describes how it is improving.

Age at interview: 49
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
And then I think the other thing is that it does get better. It might get worse before it gets better and do bear in mind that that period between discharge and having settled into a new way of doing things at home can be at least psychologically more challenging than anything in hospital.
 
But over time things do get better. And I’ve only been out for a year and, you know, I’m, I’m already going to the cinema and theatre and restaurants, and am able to go out and visit friends in their homes. And you know, go shopping. I’m able to make a valuable contribution at home, you know, in the house supporting my wife with my children, you know, helping them with school work and, you know, reading with them and... So it’s different and I’m not going to make out that it’s anywhere near as good as it was before, but it does get better and I think the longer you’re out and, certainly the longer you’re out and stay out of hospital, the better it gets. That certainly seems to be the experience of people who’ve been injured for a lot longer than I have.

 

People said that when it comes to medical treatment, rehabilitation and care, it is important to ask questions, research your options and make your own decisions. For the most part, they said that health and social care staff had their best interests at heart and advised others to trust them. They wanted to encourage others to work hard, keep persevering and try their best in rehabilitation. But, recovery takes time and you should not feel like you have to rush it. They suggested finding out as much information as you can to help yourself and to be pro-active.
 

It is important to take control of your life again after injury and not to let other people make...

It is important to take control of your life again after injury and not to let other people make...

Age at interview: 29
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
I would say get your friends around you, you know, your family is going to be too traumatised to really help you in the way that you want to be helped. Find the thing that you do well and get back to that. And you have to believe that all things you’re doing which are hard, will get easier. And you know, it’s, there’s nothing corny about it, it’s like hard work. But there’s a joy to doing something hard well. And, you know, you have to learn to enjoy and to be strong. And, you have to set your standards for, for how you’re going to behave, because it’s down to you and there’s no one you can really compare it to up to that.
 
And finally just make sure that you find out, you know, everything about what’s happened to you and what the other options are and don’t let other people make decisions for things which are really, really important to how you life’s going to pan out. So, yes, just do everything you can to get back in control.

 

 

Ambrose recommends that people ask questions about their treatment, but they should trust the...

Text only
Read below

Ambrose recommends that people ask questions about their treatment, but they should trust the...

Age at interview: 44
Sex: Male
HIDE TEXT
PRINT TRANSCRIPT
But I think you know, it’s easy to say oh just stay positive it will be fine. But I think the really important thing that I’ve learned that other people have said as well is you know, just keep that idea that, you know, you can ask questions and say why are you doing it like this. Is there any other different way of doing it? You know, what are we hoping to get out of whatever treatment it is. It doesn’t matter whether it’s for a broken leg, broken arm, stroke, heart attack you know, it’s all that thing of, you know, keeping the communication going between you and health professionals and thinking, right these people are actually trying to make me better and so we need to be having discussions amongst me, family, professionals of, you know, what are the options? 
 
And then obviously the progress to say, you know, you said this is how it might go along. Are you happy with how it’s going? Like how I understood what was going to happen is that is it the same is it different? Because obviously, you know, when you first start on a treatment and they say this is the plan, we’re doing to do this, this, this, this, this and you say okay right that’s the plan, but, you know, I think the most important message is you know, don’t be afraid to ask. Because we’re past the, like the old generations now of yes, doctor, whatever you say doctor, you know I’ll keep taking the pills and my leg will fall off, but it’s fine because you just said keep taking the pills. So it’s much more of, you know, the whole, the whole system has changed, you know, like the, the new consultants and nurses and occupational therapists. You know, there’s a whole different ethos now of you know, we’re all going to work together for the benefit of the patient, the person that needs the help. So that’s the thing to really remember, it’s not you and them, you being told what to do, it’s us altogether you know, and then it does seem for me personally to work very well doing it like that.

 

People advised others to make a plan, to think about the dreams they wanted to achieve and to set some goals. It is important to focus on the things you can do after injury, rather than the things that you can’t. Simon B, who broke his neck when he was 25 years old, said “if you there’s things you can’t do, find new things to do.” Several people advised others to try to get back to the workplace, or to volunteer and to pursue something that they are good at. You shouldn’t be afraid to admit that things are difficult and you can rely on friends, family and charities for support, but you need to work hard to ensure that your relationships don’t suffer. Nick Z said, “To start with you will be thinking more about the impact on your physical abilities, but I would encourage you to spend as much if not more time thinking about the impact on relationships”.
 

Even though it is 11 years since his brain injury, Adrian is still learning new ways of tackling...

Even though it is 11 years since his brain injury, Adrian is still learning new ways of tackling...

Age at interview: 42
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Your future’s not, your future’s bright, though you learn all the time. You think you’ve learnt after a year what you can and can’t do. You’ll learn more. There’s always, you might not learn as much as you’ve learnt initially, but you, I’m always learning. I’m eleven years on, there’s still things I’m learning about how to manage my life better or how to do things, how to be more positive, how to make people more aware about head injury, about me, about my limitations. So it will always get better. You’ll find ways to improve and also you’ll, you’ll go through a period of time probably of being resentful, but then you’ll go through positive thinking' I’m still here and life’s good. And life is good. And the more you can, the more difference you can make to others and make people aware that what head injury does to you and has affected you, how to avoid them having the same thing happen to them, but also don’t think about what you can’t do, think what you can do. That’s what I went through that period of time thinking what I can’t do, but I thought, no what can I do. I can do this and that. And so it’s think of what you can do. Yes.
 
Okay, so think positive and …
 
Yes.
 
… and give it time.
 
Yes. Exactly, yes, exactly, you know, give it time. Time’s a great healer. You’ll learn over time what you can or can’t do, and you’ll learn about who, also you’ll learn who your friends are, who your family is, and who you can trust and who you can’t trust. But, but you’ll find a purpose and there is a reason. You might have time on your hands to do things and you’ll find out what fits in with you and you’ll get, you’ll improve.

 

 

Ed would encourage others to admit when they have a problem, but not to give up hope.

Ed would encourage others to admit when they have a problem, but not to give up hope.

Age at interview: 42
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Time is a good healer. Don’t give up on hope, and don’t let those around you give you sort of absolutes, right, because you can’t give up on that. My wife has been fantastic in many, many respects here. However, one of the things that she, because, mainly because she’s scared, she has turned round and said, “I don’t think you’ll be going back to work.” Or, “I don’t think you’ll be going back to work in your previous job in that, doing that role. I don’t think you’re going to be able to do it.” Well that, that’s hit me pretty hard. I didn’t like it, because and it was actually at the previous neuropsychology session that we both attended that actually the psychologist turned round and said, “No, hope is very, very important here. Don’t take that away. Don’t forget it. Take it away. Hope.” 
 
So basically time, hope and look for others experiences. If you look there’s an awful lot out there. This hopefully will be part of it. But, as well as that, Headway, fantastic charity and, provides a lot of guidance, support for people that have had brain injuries. 
 
Likewise this [retreat location], and it is it’s everything. Everyone that goes to these sorts of retreats, goes for a reason. Invariably something has affected them very traumatically. And it has affected them mentally whether it’s a physical injury such as I’ve had or an emotional injury caused by whatever situation there. There is an awful lot out there, but don’t be shy in stepping up and saying I’ve got a problem, let’s do something about it. Because if everyone can do that, everyone can admit it, it then it doesn’t become such a stigma and without it being such a stigma the disability element of it deteriorates.

 

 

Simon thinks that volunteering or going back to work is important because it gives you a reason...

Simon thinks that volunteering or going back to work is important because it gives you a reason...

Age at interview: 42
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT

Stage return. I would certain encourage people not to return full-time straight away, maybe part-time, or if they lose their job, start volunteering. Or start finding a way back into the working world. Because it brings, it brings a whole new life to you. If you’re not stuck, if you’re stuck indoors seven days a week because of disability and not leaving the house, you’re probably depressed because you’re stuck indoors as much as you’re depressed because you’re disabled. So to have something to get your teeth back into is, is important, I think. So I found that although work can be quite demanding and quite hard, I think it’s, in many ways, something that I’m really glad I’m engaged in. Because everyone needs something to get out of bed for. And for me, I like my job, so I don’t mind getting out of bed for it. 

To carers
The carers we spoke to encouraged people to take each day as it comes, to have hope, and not to worry too much about the future. After injury when relative’s conditions became stable, carers of people who had brain injuries advised others to start thinking about helping them with their recovery.
 

When Wesley was in a coma, Julie and Corrie took photographs of him so that when he came round...

When Wesley was in a coma, Julie and Corrie took photographs of him so that when he came round...

SHOW TEXT VERSION
PRINT TRANSCRIPT

Julie: Photograph albums. Do a photo, do photos through the process, especially from the beginning, that they’ve got something visual to see because if you don’t have a memory of something and somebody’s telling you something it’s not the same as being able to visually look at something, and I think because they’re already coping with what’s happened to them, I’m glad we did the album. When ready, when Wesley was ready to look at it, it gave him a pictorial process I suppose.

Corrie: Yes, yeah.
 
Julie: Because I’d experienced previously, speaking to people, as I say I had a few youngsters with me at the time, who couldn’t remember anything and when they would ask family well what was I like and what was this?
 
Corrie: Describing it is very different.
 
Julie: It’s very different to seeing something visually. And I think it’s, it’s good for the person when they’re ready. We didn’t force him did we?
 
Corrie: No.
 
Julie: We just said to him, you know, when you’re ready to look at it you can, but I think it was definitely, I’m really pleased, I don’t think other people thought that when they first saw me clicking a camera of him lying in bed in a coma. But I knew why I wanted to do it. And I’m glad I did because I think, I think it’s helpful to the person whose, whose had the injury, because they’ve got something tangible in front of them.
 

 

They said it was important for other carers to accept any help they are offered. One carer advised that when living with someone day to day you don’t always see the improvements they are making and progress may be greater than you realise.
 

It is important to stay positive, not to worry about the future and accept help from other people.

Text only
Read below

It is important to stay positive, not to worry about the future and accept help from other people.

HIDE TEXT
PRINT TRANSCRIPT

Yeah. I mean basically I’d like to say, for a start take one day at a time. Don’t be thinking about the future and about you know, how or is this going to get better, is that going to get better. I will say one thing – it does get better. You know, if somebody’s in, maybe now in the early stages of someone with brain injury and you think, this is so hard and I’m never going to get, it’s never going to get better. It will get better. Take every day as it comes. Take all the help that’s given to you. If somebody says can they do something to help you, please do not be independent, because it will tell on you in time. Get all the, all the help you can get, if somebody is saying to you can I just do your shopping, or can I hoover up for you or anything, you know, that … can they take your partner out for the day or whatever? Don’t be stubborn and not accept any help. Accept all the help you can get. And if you need other help like emotionally and psychologically and you’re not getting it while you’re at home, then go out and seek it, you know. Go to the doctors, your GP, and...If you are seeing the neurologists, ask them for help. They will know who to send you to. So sort of try and get all the information that you can. But and just keep thinking that he will get better. Time is a great healer and they will get better day by day and when you’re seeing them day-by-day you’re not seeing it. But if you have somebody to come and see them one week and they didn’t see them for about three months, they will be able to tell, oh wow I can see the difference in them, you know, they’re getting better and better. And even though Glen was very good by the time I met him, I mean even I could see, you know, how marvellous he is, and now he’s come on lots, you know, since, since we’ve been together. So it does get better. 

They encouraged others to accept that injury can change people and that they need to think about how to sustain their relationships.
 

DJ says after brain injury your spouse will not be the same. You need to be sensitive and think...

DJ says after brain injury your spouse will not be the same. You need to be sensitive and think...

Age at interview: 69
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT

No I think the biggest thing is to realise that you don’t have the same person that you had. You don’t even have, I know you shouldn’t have to say that, because you’ll know that, you can tell by the way things are working in the house, but from there then you have to say, all right. How am I going to make this marriage continue? What do I have to do without compromising what I know is right and what my spouse knew was right before? How do I make sure we don’t compromise that? But how do I talk to them so that we can work through this? And the thing is that with anybody, but especially a person with a brain injury, once you realise you’re wrong, whether you admit it or not, once you can realise you’re wrong, then you can start to make adjustments. And I think probably the biggest thing with a spouse is that, this is where we have to be extremely careful, is that for instance if I was a spouse and I knew I wasn’t speaking right, and I’d made a decision not to speak wrong again, that doesn’t mean I’m not going to speak wrong. But if I told you that I’m not going to speak wrong, and now I’ve spoke wrong, your immediate reaction is, or the spouse’s immediate reaction is, “Why’d you do that? You said you weren’t going to.” So we have to be careful because they can’t always do what they know they should do. And they may have even made a decision to do it and not told you. But then if you criticise them, in a harsh way, their immediate reaction is don’t tell me what to do. So you, you, you have to learn the balance of trying to, don’t compromise what you know is right but how do we talk to the person, and you can have some serious fights, and we did. But I believe because we made it a conscious decision when we first got married we would never be separated. 

To health professionals
People we spoke to were very grateful for the medical care they received from health professionals and wanted to thank the medical teams who had looked after them. A man with a brain injury (Interview 7) said staff treated him “like a person and not a stupid person”. Some people commented on the way they were treated by doctors. Dave suggested that doctors may become desensitised to injuries that they treat regularly but to keep in mind when treating a patient that it is the first time this has happened to them and to show empathy.
 

Sam says that “there is nothing like an amazing doctor,” and they are the ones that everyone...

Sam says that “there is nothing like an amazing doctor,” and they are the ones that everyone...

Age at interview: 29
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
So you know, I know they’re under a lot of pressure and if you’re under a lot of pressure from external sources it’s easier to forget who you’re really accountable to, but you know, the things you do will affect people for the rest of their life. So you know, you should act accordingly.
 
And for the ones that do you know, Christ, I love these guys. You know, there’s nothing like an amazing doctor, who is, you know, really warm and really there for you, and really understands and, and, you know, you can tell they’re making an effort and they care what happens. Those are the guys that everyone should aspire to be like. I say guys and girls, they’re the ones they should aspire to be like. And don’t be so scared to give people hope, you know, I don’t think that’s such a bad thing. I think people can cope with, you know, occasional disappointment. It’s just bleakness, which is very difficult at the beginning. I think yeah, yeah. I think that’s it.

 

 

Joe believes that if medical professionals can make people feel valuable after a life-changing...

Joe believes that if medical professionals can make people feel valuable after a life-changing...

Age at interview: 53
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT

Yeah, well health and social professionals. I think if they show like [name] and [name], these two ladies, as far as I am concerned they’re icons. Because they have a way in which they deal with people with brain injury or people with disability. They never make them feel worthless or useless. They make them feel valuable. I think if health professionals get that over to patients then I think they can, they will help those patients, they will help patients or people with these issues to really get back on a road to some form of recovery or whatever. 

 

When health professionals work together with the person’s family they can achieve more.

When health professionals work together with the person’s family they can achieve more.

SHOW TEXT VERSION
PRINT TRANSCRIPT

Julie' My biggest gripe I think, outside the units is that they lose sight of how to communicate with the family. And they don’t know how to do that and work together and I think you could achieve a lot more as a professional if you worked together with the family. You could do more and achieve more, because most family members, like when I was there, I was happy to do what I needed to do. And there’s a lot of family members that would say, if you show me how to do it, I can do it when you’re not here. If you showed me how to do this, I can do it myself while we’re sitting in the room and work together, and I think sometimes the professionals lose sight of that. They lose sight of the fact that they could get a lot more from the family if they were more inclusive rather than but I’m the expert, you can’t do that. You show people what to do and what they can achieve, isn’t it? And work towards that. They forget that they’re talking to human beings basically. I think.

 

It is important for health professionals to remember that life-changing injuries are very...

It is important for health professionals to remember that life-changing injuries are very...

SHOW TEXT VERSION
PRINT TRANSCRIPT

Corrie: I think that’s true in a number of cases, they just seem to get very focused on what they need to achieve but sometimes they probably don’t even realise that their mannerisms and the way they’re speaking because they’ve come across this situation a hundred times before, actually the family members that are there, this is their first time and it’s a very emotional time and to, just someone’s tone of voice or tainted attitude or eye contact or communication can make a huge amount of difference in reassuring the family members, and just being honest and say look, you know, there’s not a lot else that we can do. We need to figure out a plan for going forwards, we need to make sure that his day to day cares are looked after. Don’t have any answers for you. Just having that bit of time. And it’s not, it’s not true in all cases, it’s just we came across a number of different doctors and nurses and therapists with the various hospitals Wesley was in and it was quite clear that the people that took the time to do that, reassured us an awful lot more than the people that may have given us exactly the same factual information but didn’t give that element of reassurance. And you don’t expect people to say, “Don’t worry, everything’s going to be absolutely fine.” You just want people to be a bit open and honest and you know, at the end of the day some of the health care professionals, they’ve got their own lives and they’ve got other things going on that are going to impact how they behave at work, but it’s keeping the focus on, I need to remember the fact that this person has got their son lying there and they’re worried sick about him. I need to make sure that I give the right message to reassure them and not to upset them any further. Which some people are fantastic at it and some people aren’t, and sometimes it’s not in people’s natures anyway [laughs].

 

People valued the physiotherapy support they had after injury and some said that they wished more of it could be available. Other areas of support were suggested: Louise thought there needed to be more emotional support for people with a burns injury. She felt very isolated during her recovery and wanted health and social care staff to think about the social side of life-changing injuries. Barrie recommended more knowledge and awareness of what’s available for people when they come out of hospital. Jack said that more advice on the day-to-day impact of having a limb amputated would be useful. Christopher suggested that there is a need for a benchmarking exercise where a marker is set for patients to work towards in their rehabilitation.
 
Some people felt judged by health and social care staff because of their injuries or their life circumstances. Bryan wanted staff not to judge patients and to try not to equate everything they do with the injury.
 
To the general public
People said they’d had positive and negative experiences with others, and that there needs to be a greater awareness of disability amongst the general public. Adrian said it was especially important to raise awareness about brain injury because it is often not visible, and people with brain injuries may be misunderstood.
 

Adrian carries a card which tells the people that he has a brain injury and he needs help with...

Adrian carries a card which tells the people that he has a brain injury and he needs help with...

Age at interview: 42
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Head injury is the hidden disability, so it’s not obvious that someone’s got a head injury or not, it’s not always obvious that they’ve got head injury. We, I carry a card on me that proves to someone that I’ve got an injury, so I carry this card here.
 
Hm.
 
That just tells someone that I’ve got an injury …

Yes.
 
And it says, ‘I’m a survivor of brain injury. I may have problems with my memory, speech or actions. Your help and patience will be appreciated’. Its quick card and I can say to someone, “Sorry I can’t remember where my car’s parked, or I’ve forgotten whereabouts I’ve sort of left my bag. Whatever it is it means look instead of going to someone, “Look at the scars, I’ve got a head injury.” That’s a card that summarises basically the problems I’ve got. Yes.

And have you had to use that before?
 
I’ve had that card seven years, I’ve never used it, but it’s always there in case I need to. That’s what I mean, I don’t want to go...I’ve been in the past said to someone, “I’ve got a head injury” and shown them my scars. I don’t want to do that. I don’t want to spend my life doing that. So having a card is far easier to say boom I’ve got an injury. I need help with this or that.

 

Simon A said he would like the public to be more open-minded. He said, “The world’s a better place by being this ridiculously rich tapestry that it is. Just be more open-minded”. Jamie wanted other people to learn from his experience and take more time and care on the road. 

Last reviewed October 2015.
donate
Previous Page
Next Page