Varied experience of the acute illness event

Many participants understood the acute presentation of stroke to be ‘the facial droop, the arm paralysis or the speech problems’ (P7). Some said ‘that was exactly me’, but many described a more ambiguous scenario, such as ‘I can’t type and I’m feeling a bit fuzzy, but I can still cook my dinner and shower’, which made them less likely to seek emergency medical attention (P1 and P4). Psycho-emotional experiences of the acute stroke event also varied among participants, ranging from traumatic to even positive. One man described his distressing experience of being wheeled into the emergency department in a wheelchair: ‘I couldn’t control my head… and I could hardly find the strength to breathe in my lungs and I lost my vision… but I was fully awake inside… thinking… “I’m dying”’ (P2). In contrast, another participant said, ‘it was really pleasant… There was no lead up at all… and then all of a sudden I just felt… pleasantly weird’ (P9).

Grieving from the discordant and devastating diagnosis

After participants were diagnosed with stroke, many described going through states of grief including shock, denial, anger and depressed mood. The initial response was oftentimes ‘disbelief and stress and rejection’ because stroke was perceived as a disease of old age and unhealthy lifestyle factors and therefore incompatible with being a young, healthy adult (P1). One participant described that ‘stroke was always kind of marketed… for old people’ and many spoke of having ‘virtually no risk factors’ such as smoking, drinking, drug-taking, high blood pressure or heart disease (P19 and P3). After the shock of the ‘surreal’ diagnosis, many participants described feeling angry and crying frequently (P10). They were ‘grieving [their] physical ability’ and ‘grieving the person [they were] because everything had changed’ (P19 and P12). Several also spoke of questioning ‘why me’ and ‘why God’; they were faced with existential and spiritual questioning of an unfair and incoherent event in young age (P1 and P2).

I experienced a few years of almost rage. I’d go through “why me” and “how come” and all those phrases and I’d just been so angry inside myself. (P1)

While stroke caused grief for many, some individuals’ reactions were mitigated by their personal and/or family history. One woman with long-term high cholesterol and a family history of stroke spoke of ‘always expecting to have a stroke at some point’ (P15). Another participant related how the diagnosis was ‘almost a good result’:

I was absolutely astounded because I was sitting there waiting to be told I had a brain tumour… And so in some ways… it was actually almost a good result. (P11)

Long-term depression, anger and emotionalism

For some participants, depressive symptoms after stroke were short term and reactive (grief, <6 months). Others, however, developed long-term and unremitting depression. Several participants also described long-term ‘anger management issues’ and related how they would unintentionally take their temper out on partners, parents and children (P7). One man described that ‘when you have the slightest problem the feeling inside you is like an atomic bomb and you just can’t keep it in sometimes’ (P2). Some participants also described becoming ‘a lot more emotional’ after stroke (P13). They would cry more easily than previously and one participant considered, ‘I don’t know whether it’s a chemical brain thing or whether just a fact that I’ve gone through something really bad’ (P12).

Anxiety about stroke recurrence and impairment

Anxiety was another prominent psycho-emotional experience of participants, especially regarding stroke recurrence. For some participants, this was made worse by not having a cause for their stroke and the belief that there is ‘nothing I can do to stop it’ (P13). Several participants were ‘dominated’ by the fear that a subsequent stroke would render them more impaired and dependent and many lived with chronic uncertainty about the future (P7).

I get anxiety all the time now… Even if I feel anything, like a ringing in the ear, then I get paranoid. (P14)

Anxiety about stroke impairments was also reported by many participants, including anxiety about lacking control over one’s body, falling over in public and not performing tasks properly because of cognitive impairment.

Moving forward after stroke

For many participants, it took years to come to terms with the stroke diagnosis. Time itself was identified as one important mitigating factor to ‘detrimental’ thinking (P4). One participant described, ‘I think about it every day obviously, but I’m not thinking about it as detrimentally as before. It’s more in the past now’ (P4). Participants also described using different mechanisms to cope with what had happened, including focusing on the way forward, occupying the mind and setting goals. One participant described, ‘I had this idea that if I stopped depression would just consume me… so I had this idea that I… would have my runners on and just work and… socialise and see how far I get’ (P12). Humour was also used as a coping mechanism ‘because if you don’t laugh about it, you just cry’ (P17).

Losing pre-stroke present and future biography

Many participants described stroke as causing profound loss. Largely, reflections were on ‘life losses’ and how participants had lost their established pre-stroke life construct, including work or study, family roles, leisure activities and social routines. Some also reflected on loss of future potential, from pursuing a career in journalism to snorkelling in the Great Barrier Reef. One man spoke of how he and his wife had ‘done those hard young years’ and had been looking forward to more senior positions at work, financial freedom and travel:

There [were] big steps to be had and that was just taken away. And you spent 20 years working towards that and then all of a sudden… it just gets cut off. (P9)

Participants confronted these losses at different times. For many, they became evident on returning home to the pre-stroke environment or witnessing friends ‘doing things that you can’t do’ on social media or otherwise (P17). One young woman described what it was like returning home after stroke:

I think what… really dawned on me was that fact that I’d been away for about three months now, my life was completely changed and myself included and nothing had changed at home at all… I remember seeing my work clothes just sprawled out on my bed like it was just the day before the stroke… And I remember patting my cat and I couldn’t pat her with both hands and I got really upset so I broke down for the first time. (P12)

Losing pre-stroke self-concept

Some participants also described losing their sense of self through stroke. At the extreme end, two participants described that they had in some way ‘died’ (P7 and P19). Another participant clearly delineated herself into the pre-stroke and post-stroke person and described the internal tension between her divided self-concepts: ‘the pre-stroke person will sort of just be beating up the post-stroke person because you know it’s like “why can’t you do it?”’ (P10). Other participants spoke of a same-but-different dichotomy with one articulating:

My core values and everything are all still the same… But I just feel different… I just view the world completely differently now. (P19)

More impaired participants also spoke of trying to define themselves within the disability discourse post-stroke. Some described themselves as disabled, while others dissociated from disability language with one relating, ‘I just consider myself… really badly injured’ (P16). One woman described how she was left with an ambiguous self-definition:

Disabled is not a bad word… [But] I can’t think of another word to describe myself… because I’ll say you know to family… “oh I’m disabled” and someone will say “you’re not disabled”. And I’m like “but I am I suppose”… I don’t know what I am. (P19)

Losing relationships from bidirectional change

Adding to these losses, many participants recounted breakdown of relationships and social isolation after stroke. The most prominent contributor to this was loss of friendships. Participants reasoned that their friends did not know how to approach the situation, visiting required too much effort, they were no longer able to connect over shared social activities such as running and there was loss of the balance needed to maintain a reciprocal friendship. Some participants also experienced breakdown of intimate and family relationships with one participant describing, ‘I lost my wife and my home life… and that was taken away from me because she couldn’t live that way anymore’ (P2). Loss of relationships had a significant impact on the lives of many participants and one young woman described how her ‘friendships and the distress within that was actually even bigger than having had a stroke’ (P12). Another participant described the isolation:

When I had the stroke and came home… nobody came… I was that desperate to talk to people, and I know it sounds awful this, but I got a knock on the door by Jehovah’s Witnesses and I invited them in for a cup of tea and a chat because they were the only people that came. (P2)

Participants also acted to isolate themselves after stroke, hence the bidirectionality of relational loss. They isolated themselves in order to focus on their recovery and spend time with family and some internalised their thoughts and emotions so as not to ‘further burden’ and ‘add to the pain’ of others (P12). Some also experienced that their stroke impairments isolated them; they became ‘an observer’ or ‘spectator’ because they were no longer able to participate in interactions or activities in the way they previously had (P16 and P17).

Gaining a new appreciation for the important things in life

The losses of stroke also saw participants experience gains. They gained a new appreciation of ‘what’s actually important in my life’ (eg, family), they were more mindful of how they used their time (eg, on things that ‘spark joy’), they were less self-centred and they were more attuned to nature (P10 and P19). In accord with this, some also described strengthened relationships with partners and family members after the stroke.

I don’t think there’s any other way to describe it other than it’s a great sense of loss, but at the same time you gain a second chance, a second chance to do things differently and approach life differently. (P17)

Recovering function after stroke

Participants with physical and/or cognitive effects of stroke described that it often took weeks to months before they began making marked gains in function and recovery was often experienced as a mechanical stepwise process. For example, one participant who had locked-in syndrome after their stroke spoke of going from getting their ‘quads engaging, flickering’ to eventually being able to walk (P2). Another participant reflecting on the process of regaining speech described two years of ‘stringing sounds together to make small, to longer, to multi-syllabic words’ (P17). However, the initial period of relatively rapid physical recovery set several participants up with the ‘false expectation’ that ‘progress would just continue’ (P10 and P16). It was then very difficult for participants when they perceived that their recovery slowed, halted or even reversed because of the emergence of late complications (eg, spasticity). For most participants though, recovery was ultimately regarded as an ongoing and long-term process ‘if not… a fact of life after stroke’ (P12).

[Recovery] does plateau a bit… I will say that most of my recovery happened in the first couple of years, but I’m 15 or 16 years post-stroke now and I still notice changes this year compared with last year. (P7)

Living with and adapting to stroke sequelae

As part of their recovery, participants were faced with finding ways to live with and adapt to any persisting stroke sequelae (eg, fatigue, memory problems, sensory overstimulation and weakness). One of the most challenging effects was post-stroke fatigue. Participants reported that it was largely caused by mental stimuli such as learning or concentrating and was best managed by ‘turning off the brain’ (P13). Participants also modified their tasks and routines to accommodate fatigue. For example, one completed important work-related tasks in the morning to mitigate mistakes from fatigue and another managed by resting days prior to and after an important event. One participant described post-stroke fatigue:

It’s almost like you were hit by a bus. It’s almost like you’re coming down with the flu. You can sleep for 10 hours and you still feel like rubbish. (P12)

Returning to work or study

For many participants, returning to work or study was an important part of recovering from stroke as a source of purpose in life, contribution to society and rehabilitation. One participant without work after stroke described how ‘that’s the hardest part… not having a job… having that purpose’ (P8). Another related, ‘the rest of your life is in front of you [and] I’m now a burden to the economy’ (P6). Interestingly, work was also an important part of fitting into younger circles and having something to talk about:

You kind of feel like you have nothing to talk about other than the stroke… Even with my husband, I feel like he comes home, has a lot of stories to tell, and I just have what I’ve done today in rehab. (P17)

However, while work was identified as important for many participants, some described that it was less meaningful post-stroke because of changed priorities. Some also attributed work-related stress to causing their stroke, which further shaped the meaning after the illness event.

Desiring normality and belonging

Many participants expressed that they ‘just wanted to feel normal again’ and ‘just wanted to belong’ after stroke (P11 and P18). They particularly spoke of the value of being spoken to as a normal person. One participant explained that when everyone says ‘“oh can I open the door for you”… it just… reminds you that you’re different’ (P8). Adaptive devices also symbolised abnormality:

There’s a lot of things out there that make it easier, but you just want to feel normal… I need… transcribing software and… a special desk and… a special parking space… a special everything. (P17)

While many participants actively sought to fit in and conceal their difficulties, one young woman described reaching a point of rejecting this approach. She described, ‘I just got to the point where I’m just like I shouldn’t have to hide [my leg brace]. I need it’ (P19).

Invalidated by the medical system

Invalidation describes the experience of being dismissed, discredited or devalued and emerged as a common theme in participants’ discourses. One early source of this was the medical system. On initial presentation to the emergency department, many participants described that their condition was dismissed as drug or alcohol related. Some also related that stroke was explicitly dismissed as a diagnosis because of their younger age. One participant who presented to the emergency department numerous times before being diagnosed with stroke described:

Being 46, people still classified that as… too young to have a stroke. That was said to me a few times and that was quite dismissive. (P4)

Invalidated by society

Invalidation was also commonly experienced at the social–illness interface. A discrediting social experience reported by many participants was encountering shock and disbelief in others when they disclosed their stroke diagnosis. One man described, ‘I actually had an argument with someone because they refused to believe that I had had a stroke… [exclaiming] “you’re just too young, that’s stupid, that’s ridiculous”’  (P8). They also experienced frustration and distress because of the assumption that it must have been caused by smoking, drinking, drug-taking or stress. One woman described, ‘they sort of look at you like, “oh were you on drugs… or are you a smoker?”’ (P17). Another participant with an arteriovenous malformation as the cause of her stroke related:

It used to really upset me because having a stroke I didn’t do anything to myself… Stroke just happened. (P19)

Another strikingly common experience of participants was feeling discredited in social interactions when others expressed that they were ‘lucky’ or ‘fine’ (P3 and P13). This caused hurt and frustration for participants because it negated the substantial impact stroke had had on their lives and made their cognitive and psycho-emotional difficulties seem fabricated.

It actually hurts when people say “you got out of it okay”… because… they can’t feel what I feel. (P5)

In the midst of these invalidating social experiences, several participants described young stroke groups as a unique source of understanding and sensitivity. One woman described how a stroke survivor does not say ‘‘‘gee you look great, I can’t even tell you’ve had a stroke”, which is what everyone else says and… makes you feel like you’re making up your symptoms’, but rather ‘they automatically understand that it’s a huge thing that’s happened, especially when you’re young, and they just give you comfort and support’ (P7). However, validation through support groups was not a universal experience. One man with debilitating but invisible cognitive disability described being ‘out of place’ everywhere after stroke including in ‘the brain injury crowd’ because ‘even they look at me [and] some of them go, “why are you here mate?”’ (P9).

Invalidated by the self

Some participants also demonstrated internal or self-driven invalidation. For example, some reported lower self-worth and embarrassment as a result of no longer fitting into the normate. One woman related, ‘I’m really battling feeling embarrassed and… self-conscious because you’re not walking like a normal person’ (P17). Another aspect of self-invalidation was internalising the ‘fraud’ and ‘stigma’ associated with invisible disability in society (P9). One man with debilitating neurological fatigue described, ‘I feel like a fraud every day because it’s an invisible thing’, and another related, ‘if I’m tired and I have a nap, like I feel like guilty or something… You feel like fatigue is just an excuse’ (P9 and P19).

Need for increased awareness of the many faces and forms of stroke

In response to these invalidating experiences, many participants described the need for increased awareness of the many faces and forms of stroke. One man described that ‘the word stroke is a very small word but stroke itself is a huge thing; there are so many permutations, so many’ (P3). Another emphasised that ‘stroke happens to anyone of any age’ including ‘children, babies, grandmas, male, female, overweight, healthy, fit’. This individual also articulated that her illness experience would have been profoundly different if there was awareness of stroke in young healthy adults:

I wouldn’t have to be embarrassed or ashamed or have to justify who I am or what has happened to me. I’d feel like people wouldn’t be so shocked when they see a young person with a walking cane and assume that it’s just a sports injury… I used to think that I wished I had breast cancer instead of had a stroke because then I would feel more accepted and… understood… Very much like cancer, [stroke] doesn’t discriminate, but we all know kids have cancer. (P19)