Stroke

When stroke happens at a young age

In the UK, up to 25% (1 in 4) of strokes occur in individuals under the age of 65 (NHS Choices 2017). Studies on young stroke survivors suggest that they report greater unmet needs than older stroke survivors. The needs and demands may include childcare responsibilities, work disruptions, and overall disturbances of family routines and family plans. Understanding experiences of younger people with stroke is critical given the longer length of time that they will live with potentially lasting impairments and the ripple effect on social and financial security. Although the focus of the stroke collection was not exclusively on young people who had experienced a stroke, one-third of our interview collection included individuals who were under the age of 55.

Young stroke survivors within our collection of interviews were largely caught off guard by their stroke, either unaware that it was possible to have a stroke at a young age and/or surprised given their active and healthy lifestyles. Individuals who experienced symptoms over longer periods of time did not attribute them to warning signs of stroke. One woman thought her headaches, heart palpitations, and fatigue were due to a combination of marital stress and a viral infection. Reflecting back she realised that these were TIAs, critical warning signs of her impending stroke.

Many individuals experienced delays in getting a diagnosis. Some people were misdiagnosed with issues ranging from anxiety problems to inner ear ailments. In two cases, individuals felt discriminated against when providers suspected physical and substance abuse. In these cases, individuals were sent home but sought help again when symptoms persisted.

Michelle feels that is she was diagnosed sooner she would have recovered better.

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Age at interview: 28

Sex: Female

Age at diagnosis: 26

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I think if they’d had, if they’d had realised what was happening earlier they could have possibly stopped the big stroke from being as severe as it was and then my symptoms wouldn’t be as bad as they are. And it wouldn’t have impacted on me as bad.

So do you feel quite, a bit bitter about that? That they didn’t act on that, or understand what was going on in the first place to prevent that from happening?

Yeah.

Yeah.

Hm.

So in terms of your message for the health professionals in that case, what would that be?

Just because of the age doesn’t rule out anything. Young babies, children can have TIAs, stroke and people that are presenting with them kind of symptoms should be checked and not just disregarded.

Following stroke, some individuals commented that they felt like a different person, with little semblance to their former sense of self.

She describes her stroke as a bereavement.

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Age at interview: 54

Sex: Female

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It really is like a bereavement, a stroke. I mean, it really was like that woman had died, the one that wore high heeled shoes and, walked around and ran a business and, had a fantastic memory. I had one of the most amazing memories that I took totally for granted. There’s so much that one can take for granted, you know, I take walking for granted. I always think, “If only somebody had told me on New Year’s Eve 1995 that that’s the last hour I would have ever walked like a norm, a normal person because I would have walked all day and I would have thought about how wonderful it is to walk, because there isn’t a day that goes by, and I’m not being negative but there just isn’t a day that goes by that I don’t miss walking because I miss it. Yeah. I’m always trying to do it. Always trying to do it properly. My foot is, 95% paralysed still a lot of the back of my leg is very weak, my hip is weak, so, you know, I have some trouble walking it looks, I look, as if, I mean, obviously I limp, but it’s much harder for me to walk than it looks. Yeah. And I think that’s true. I can’t speak for other stroke survivors but I think, I have a good friend who’s had a stroke and, you know, we joke about how difficult it all is and how they, in quotes, just don’t know what it’s like for us. Yeah. And how much, I mean, I remember being, in the first rehabilitation unit I was in, where sometimes people would come in for the weekend, and I was talking to one man who came in, and I said, “Do you like it in here?” and he said, “No.” He said, “They’re very nice but I don’t”, he said, “I just come in here to give them a rest, my family a rest.” I remember thinking that night, “I wish we could have a rest.” I’d like to have a rest from disability but I can’t. There is no, you can’t have one. There is nowhere you can go to have a rest. It’s just there and it is a challenge, every single day, a challenge. I don’t mean to sound, holier than thou with that but it is, you know, it’s, I had the stroke in 96 and its 2006 now, and I still think about, I can’t walk without conscious thought and I still think about, the days I could walk. It took me a year to throw all my high heeled shoes away and I knew I was never going to be able to wear them again but I couldn’t throw them away, so I had to keep them, I kept them for a year, [laughter].

It must be very difficult to, to kind of reinvent life I suppose.

I don’t know that you do reinvent life. I think that I mean, I think that you, I mean, I being the kind of woman I am and, I mean, I had long hair, quite long hair, I had all my hair cut off. Right off, while staying with a friend. I mean, really, really short. The hairdresser said, “Are you sure about this?”, but it was because in a way I thought, “Well, this hair is the hair of her, it’s the hair of the woman, that could, that walked and was well and wasn’t, you know, and wasn’t disabled and I don’t want her hair anymore because I’m not her now. I’m somebody new. I don’t know who on earth I am but I have to start all over again and that’s what it, felt like for me. I was trying to make a new beginning, trying to find out who I am, and I’m still, to some extent, trying to, find out, out who I am really. It’s an ongoing changing experience for me, disability anyway.

Among individuals who identified themselves through recreational hobbies, it was particularly difficult to come to terms with loss of mobility. When fatigue, memory, and concentration were affected, it was important to break tasks into smaller components, set smaller goals and rest frequently. This was frustrating for individuals who were used to multi-tasking (i.e., juggling work, childcare, social, and recreational schedules).

Most individuals experienced disruptions in employment, either temporarily or permanently. At times, the husband, wife or partner of the person with stroke also took time from work, particularly when young children were in the picture, leading to role adjustments and sometimes financial strain.

She talks about how the stroke has impacted work, driving, family and future plans.

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Age at interview: 31

Sex: Female

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Do you thing having the stroke, has it, has it changed any of the goals that you had previously?

Hmm. Well, I was meant to be starting back my work after my maternity leave of having a wee boy and obviously that, that’s not going to happen now because I live too far away from it and I can’t drive to get there. But at that time, I had just had a baby, so the only goals were to be a family unit at that time... so I suppose, I can’t drive now, so I mean, all, I always took that for granted. “Look it doesn’t matter because I’ll never be stuck anywhere, I can just go wherever I want to go” and I can’t do that now, so I suppose it wasn’t really a goal for the future but, it’s, I can’t do that. But really, it was just to, just starting a young family, so that was my priority. Goals, I hadn’t really thought career wise that it was, my career was going to change, even within the next maybe five years. I hadn’t really thought that far ahead, to be honest.

Do you plan to have any more children?

No. I don’t plan to have any more children, I’ve not, I’m not really allowed to have any more children as well. It wouldn’t be a good idea, the doctor had said if I was to have any more children. So, and to be honest with you, I don’t think I could cope, I really couldn’t. Two is plenty and I’m really kept busy, more than I had ever imagined especially now, with the way things are, memory and everything, I couldn’t manage with another so there’s definitely not going to be any more.

Some individuals were concerned about the impact they were having on their children and/or husband, wife or partner, even though in many cases, the husband, wife or partner reassured them that everything was okay.

He talks about his relationships with his wife and his concerns for the future.

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Age at interview: 47

Sex: Male

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What sort of impact has the stroke had on your relationships with your wife?

Well, it certainly changes things in terms of your role within the family because certainly now I’m dependent now, than a partner. That’s certainly how I feel because the things we’ve taken responsibility, the things that need being done in the house, just paying bills, organising things, just running a home, all those sorts of things, all the responsibility of doing that falls on my wife, which I don’t like and I feel, “What sort of a husband am I?” It does worry, I do sometimes think to myself, “What’s my wife getting out of this relationship and how long are we going to be able to sustain it?” When we talk about that, she reassures me and says that she still gets all the emotional support from me that she used to alright, I don’t, I can’t do the physical things but emotionally she knows I’m still there. But it still worries me that perhaps that won’t be enough in time. But perhaps I’ve just got to look at it and enjoy things, take it day by day, and enjoy it while it’s working.

Do you mind me asking about the, the physical side of your relationship?

No, I don’t mind that, that’s different. It’s not as active as it used to be. But I think any young lady would find a cripple less attractive than the man that she married who was fit and able bodied.

Is it, do you, I mean, does everything still work the same as it used to or have you had any problems with that? Sometimes it can be affected by stroke.

No, I haven’t had any problems in that respect. No, everything still works. But for me it’s the big thing about being able to do romantic things together. It would be great to be able to go on a holiday, just hold hands and walk along a beach or just go for a picnic out in the, the country and sit by the river and watch, you know, just sit outside and have a picnic and things like that. But if we do anything like that, I’ve got to rely on my wife to push me in the chair, which I don’t think sounds very romantic then, having to be taken rather than me taking my wife. So it’s those sorts of things that, that I think make, make a difference as well and I think it just changes the, the dynamics of the relationship being seen rather than a partner and your, her husband, you know, perhaps I’m seen more as, as a dependent now. And I’m sure that makes it different emotionally in terms of how my wife feels towards me but she says not but I don’t, I can’t accept that that doesn’t make a difference.

In some cases, relationship strain was experienced. One woman was in the midst of reconciling with her husband around the time she had the stroke. They separated shortly after and she worries that the additional strain from stroke caused the separation. Another man with stroke and his wife sought out counselling to help them adapt to the changes in their life brought on by the stroke.

The stroke initially took a toll on Gavin's marriage but him and his wife are finding ways to...

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Age at interview: 47

Sex: Male

Age at diagnosis: 45

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But there is undoubtedly a big challenge for both parts of a marriage when one half has had a brain injury that was affected, whether it be their mind or their body or both. And for me as a, [clears throat] someone who was a working dad, sole breadwinner, it’s been a massive challenge to adapt to my new life and my new outlook. My dreams and ambitions have changed. The, the goalposts have kind of moved. They haven’t necessarily shrunk, they just, the goalposts have just moved. Or become different.

But on the marriage thing, I think that’s been a quite big challenge for us to, to learn to work together, learn to both be parents and, and learn ways that I can contribute and help her so that she’s not really a single parent. I think for people with their personal lives, their relationships and marriages, that’s a big challenge. I can really only, only say to other people who might be in the same position to seek help, seek counselling and try and admit to yourself... If you’re the one that’s had the brain injury sometimes it’s difficult to assess yourself. Am I difficult to live with? Am I impossible? Am I an awkward, annoying person? Has the brain injury made me just impossible to get on with? No, it hasn’t. But to ask that question and answer it is quite difficult. You need to seek other people’s help and advice. And perhaps accept, you might be forced to accept that it has made yourself difficult to live with.

One of the things, one of the one of the top professors on neurorehabilitation said to me once that often parts of your, strong, strong and perhaps unusual parts of your personality that you had before your brain injury, like perhaps your determination can become enhanced after a brain injury. So if you had any bad parts of your personality that you had before they can become worse after a brain injury. So, I mean, if I was to ask you what are the worst parts of your personality, I don’t expect you to answer, but if you were to think and identify those things, and then say, “OK, imagine what I’d be like if those things were doubled or trebled, would I just be impossible?” And I’ve had to ask myself that question. There’s no doubt that there are some things about me like perhaps not always listening properly, perhaps I interrupt other people too much. I’m basically a talkative person and that’s part of my personality. It was part of my personality before. And I’ve had to ask myself has that got worse? Has my empathy with other people become less? Have I become more self-centred? I don’t think so. I think that when you’ve had such a severe shock to your life physically and mentally you’re bound to kind of think about yourself a bit and you’re bound to perhaps expect other people to give you a bit of leeway on some things because of what’s happened to you. And that can be difficult for other people.

I was talking about the marriage. Rebuilding my relationship with my wife as well as rebuilding my relationship with my children has been a huge challenge. I think we’re getting there.

Last reviewed June 2017.
Last updated August 2013