Still the same? – Self-identity dilemmas when living with post-stroke aphasia in a digitalised society

ABSTRACT

Background: Self-identity construction through “stories of self” is highly relevant for people with aphasia, not only because the onset entails a “biographical disruption” but also since their ability to keep their “stories of self” going is reduced. Three dilemmas (constancy/change, sameness/difference and agency/dependency) are known to be central to identity. In a digitalised society like Sweden, self-identity construction, including the navigation of these dilemmas, takes place both online and offline. Nevertheless, research combining aphasia, identity and online issues is scarce.

Aim: This qualitative study aims, in terms identity dilemmas, to investigate self-identity construction in working-age persons living with post-stroke aphasia in a digitalised society (i.e. Sweden). Are the dilemmas relevant to the participants, and if so, how do they navigate them online and offline?

Methods and Procedures: Nine individuals (three men and six women, aged 24–54 at onset) with mild or moderate post-stroke aphasia participated. The data comprises nine individual audio-recorded interviews and 1,581 screenshots from online observations. Qualitative analyses were performed (vertically and horizontally), combining inductive and deductive approaches.

Outcomes and Results: All three dilemmas are relevant to the participants. They construct their self-identity as both the same as they were pre-stroke and changed. They are both the same and different in relation to other stroke survivors (with or without aphasia), i.e. both “disabled” and “normal”. They display both dependency and agency. Thus, they navigate the dilemmas by constantly negotiating what to include in their stories of self. In addition, telling one story of self offline does not imply telling the same story online.

Conclusion: The dilemmas are intertwined and highly relevant to the participants. Offline and online settings evoke different ways for them to navigate the dilemmas. Increased awareness of the possible struggle with self-identity dilemmas in people with aphasia, and the possible difference between their online and offline self-identities, should be of value to family members, clinicians and researchers. Further research based on a larger sample is suggested.

KEYWORDS:

• Aphasia
• stroke
• self-identity
• dilemmas
• netnography

Introduction

Language loss, such as aphasia, affects identity. Since identity is a product of social relationships (Berger & Luckmann, 1966) constructed through communication, “it follows that [identity] may be harmed by having aphasia” (Blom Johansson, 2012, p. 20). For instance, Shadden (2005) described aphasia as “identity theft”, and Bronken, Kirkevold, Martinsen, and Kari (2012) gave voice to a participant who described her post-stroke self as a “broken mirror”. Several researchers (e.g., Boles & Lewis, 2004; Corsten, Konradi, Schimpf, Hardering, & Keilmann, 2014; Hinckley, 2006; Horton, 2007; Shadden, 2005), not least within the A-FROM framework (Kagan et al., 2008), have emphasised the importance of including identity issues in aphasia rehabilitation. However, surprisingly few have investigated these issues.

Instead, many studies of identity and acquired brain injury exclude people with aphasia (Brady, Fredrick, & Williams, 2013). For example, Nochi (1998) and Wolfenden and Grace (2012) explicitly excluded people with aphasia. In other studies (e.g., Glintborg, 2015), issues of aphasia are simply ignored. The result of both these ways to exclude aphasia is that “we are left with limited understanding of the impact of the loss of the communication tool on narrative self” (Shadden, Hagstrom, & Koski, 2008, p. 11). Therefore, the current study focuses specifically on people living with (post-stroke) aphasia.

Self-identity and identity dilemmas

As suggested by Giddens (1991, p. 54), it is through language that we tell our “stories of self” and keep “a particular narrative going”. He uses the concept self-identity to label identity constructed through an individual’s “reflexively understood biography” (p. 53). The narratives through which we construct our self-identities are “fragile” and may be “fractured”. A stroke resulting in aphasia will most likely cause such a fracture, or as Bury (1982) put it: a biographical disruption.

Studies about self-identity in relation to disability, often adopt a standpoint of categorisation. A person is assumed either to incorporate into their stories of self an identity as “disabled” or reject it (Watson, 2002). In order to capture a more complex structure of identity, Bamberg (2011) suggested that identity differentiates and integrates a sense of self along different social, temporal and personal dimensions. In his view, any claim of identity faces three dilemmas (p. 6, emphases added):

1. the “diachronic navigation between constancy and change”, i.e. the sense of “being the same over time in the face of constant change”;

2. the “synchronic connection between sameness and difference” between self and other, i.e. the sense of “being unique vis-à-vis others in the face of being the same as everyone else”

3. the “management of agency”, i.e. presenting a self as “agent” or “undergoer”. Throughout this article, the opposite of agency is labelled dependency.

Self-identity (Giddens, 1991) is closely related to the first dilemma, since they are both about identity construction over time. Self-identity is not only a result of navigating the dilemma of being or not being the same as before (i). It also depends on the outcome of the two other dilemmas, i.e. the dilemma of being the same as others or not (ii), and the dilemma of being seen as a capable agent or not (iii). The two synchronic (i.e. expressed at one specific point in time) dilemmas (ii and iii) are, thus, waypoints along the self-identity timeline of the diachronic (i.e. emergent over time) dilemma (i).

Bamberg’s dilemmas were previously used as analytical tools by Glintborg (2015). Those participants constructed identities as both “disabled and no longer normal” and “not being changed”, which supports the dilemma of constancy/change since they express both being changed in relation to their pre-onset selves and yet not being changed. However, issues of language are ignored when reporting those results.

We argue that Bamberg’s dilemmas (2011) are suitable for the study of aphasia, because aphasia means that the key to re-negotiating identity, i.e. language, is reduced “when most needed” (Shadden et al., 2008). Without language, keeping the “story of self” going (Giddens, 1991) becomes a challenge. Furthermore, we believe that the constancy/change dilemma is likely to be of particular relevance for acquired disorders, such as aphasia, because the onset constitutes a boundary between different phases of life separated by a biographical disruption (Bury, 1982). The dilemmas should thus be useful when analysing self-identity and aphasia, since aphasia is acquired and affects language.

Identity in a digitalised society

In recent decades, digital communication has transformed people’s communication practices in most parts of the western world (Barton & Lee, 2013) and “life on the screen” entails new ways to think of identity “in terms of multiplicity and flexibility” (Turkle, 1999, p. 643). People communicate by (simultaneously) speaking, listening, writing, reading, browsing and searching, and by combining various devices such as smart phones, computers and tablets (Merchant, 2012). In a highly digitalised society like Sweden where almost the entire population, especially the working-age part, are internet users (the Swedish Internet Foundation, 2018), stories of self are being told within a combination of online and offline settings. For instance, online self-representation in terms of posting selfies on social media has become a regular ritual (Forsman, 2017), particularly – but not solely – for young people. Since people with aphasia living in Sweden are part of a society in which “identity is always online” (Cover, 2015), their stories of self will include online aspects. However, aphasia research has rarely taken online identity into account (although there are exceptions, e.g., the work of Moss, Parr, Byng, & Petheram, 2004).

Aim

This study aims, in terms of Bamberg’s (2011) dilemmas, to investigate self-identity construction in working-age persons living with post-stroke aphasia in a digitalised society (i.e. Sweden). More specifically, we aim to answer the research question: Are the dilemmas relevant to the participants’ self-identity construction, and if so, how do they navigate them online and offline?

Method

This article is based on a multimethod qualitative (Creswell, 2011) study, in which interview data is triangulated with data from online observations.

Participants

Nine working-age Swedish individuals, here named Einar, Ellen, Frida, Johan, Malin, Monica, Oskar, Rosa and Sofia (Table 1), living with post-stroke aphasia volunteered to participate after seeing our advertising in the Swedish Aphasia Association magazine or online, or after being prompted by speech- and language therapists, representatives of the Swedish Aphasia Association or participants already recruited. The participants were thus recruited through a combination of a convenience sample (Creswell, 2014) and a so-called “snowball” sample (Bryman, 2015).

Table 1. Specific characteristics of the participants.

Alias	Sex	Years old at onset	Months post-onset at interview	Years old at interview	Occupation pre-stroke	Occupation at interview	Aphasia severity* at interview
Einar	Male	53	13	54	Industrial worker	Industrial worker	Mild
Ellen	Female	24	54	29	Care worker, Student	-	Mild
Frida	Female	33	96	41	Salesperson	-	Mild
Johan	Male	51	17	53	Engineer	Engineer	Mild
Malin	Female	46	72	52	Assistant nurse	Part-time café assistant	Moderate
Monica	Female	31	60	37	Teacher	Part-time library assistant	Mild
Oskar	Male	54	78	61	Entrepreneur, Teacher	-	Moderate
Rosa	Female	25	18	26	Student	-	Mild
Sofia	Female	29	78	35	Assistant teacher,Massage therapist, Personal assistant	-	Moderate

* Estimation based on historical clinical records and the interviewer’s impressions

In order to be included, participants should be living with post-stroke left-side aphasia (at least 6 months post-onset), have been working-age at onset (i.e. less than 65 years old, which entails that they have encountered various digital communication technologies), and have Swedish as their mother tongue. All nine participants fulfil those criteria. In addition, a common characteristic across the group is pre-stroke right-handedness. Potential participants were excluded if they had any prior relation to the researchers.

This study focuses on the authentic interactional consequences of aphasia rather than intervention outcomes or neuro-biological causes. We apply the aphasia definition of Kagan and Simmons-Mackie (2013), in which it is seen as a language disability, that “masks inherent competence and most dramatically affects conversational interaction (talking and understanding), as well as the ability to read and write”. Based on this approach to aphasia, we study the participants’ own experiences rather than their specific linguistic difficulties. Therefore, no clinical assessments were made within this study. However, clinical records were consulted to confirm that a post-stroke aphasia diagnosis had been made (all nine had been diagnosed with the ICD-10 code R47.0, and all nine had non-fluent speech). Since there was a large variety in assessment instruments, reporting of the results and time since assessment, no detailed comparison of aphasia severity was possible and thus no specifics from the clinical records are reported here. For the reader to get a picture of the participants and to be able to evaluate the results, information from the clinical records was used in combination with the interviewer’s impressions from interacting with the participants, to divide the group into those with mild (n = 6) and those with moderate (n = 3) aphasia (Table 1). Aphasia severity was not part of the inclusion criteria when recruiting the participants, which means that the absence of participants with more severe aphasia was not intentional.

Data collection

Interviews and online observations were combined to collect data for this study.

Interview data comprises nine individual Problem-Centred Interviews (PCI, Witzel & Reiter, 2012) with an average length of 100 minutes (ranging from 70 to 140 minutes), conducted at times and places of the participants’ choice. Monica preferred to be interviewed in a private room at the local library and Johan at his workplace. The remaining seven interviews were conducted in the participants’ homes.

PCI was chosen to conduct the interviews because of its focus on the respondent’s “right to be understood” (Witzel & Reiter, 2012, p. 82). It aims at reconstructing knowledge about a relevant topic (problem). When conducting the PCIs of this study, the interviewer (i.e. the first author) made an effort to meet the communicative needs of the participants. Time and space were ensured for them to express themselves, the use of non-verbal communication as well as pen and paper was encouraged, and the interviewer rephrased and summarised the conversation frequently in order to ensure consensus. Again, the PCI is a suitable method, because it is based on shifting between questions aimed to generate storytelling and comprehension (Witzel & Reiter, 2012).

Initially during the interviews, the participants were all prompted to tell the interviewer something about themselves (“Please, tell me about yourself”). In addition to this initial prompt, only two pre-formulated questions (“Are you the same as you were before stroke?”, and “If someone wrote a book about you, what would be its title?”) were asked. Between them an interview guide served as a check list to confirm that all interview themes (i.e. stroke and aphasia, online behaviour pre- and post-stroke, multimodality, self-presentation, being the same person or not, stigma management, and social aspects of living with aphasia) were discussed.

To complement the PCIs, online observations inspired by netnography (i.e. online ethnographic research, Kozinets, 2015) were conducted within social media. Which social media sites to include was not pre-determined, but determined by the online whereabouts of the participants. Therefore, which sites to include was discussed and decided at the end of each interview. This resulted in including posts from Facebook, Instagram and a few blogs and websites (Table 2). The first author (collecting all data) was connected to the participants (without interacting) as Facebook “friend” and as Instagram “follower”. The blog and website posts were public. For Johan, no online data was collected, since he was not actively using any social media and his employer would not permit access to his (frequently used) e-mail account due to corporate regulations. Johan is still included in the analysis, since his interview provided relevant information.

Table 2. Overview of the online data: number of screenshots included in the analysis.

Alias	Facebook	Instagram	Blogposts	Items on webpages	Summary
Einar	142	-	-	-	142
Ellen	187	1	-	-	188
Frida	575*	35*	1	11*	622
Johan	-	-	-	-	-
Malin	-	-	15	-	15
Monica	-	35	-	-	35
Oskar	127	5	-	-	132
Rosa	291	-	-	5*	296
Sofia	60	91	-	-	151
Summary	1382	167	16	16	Total: 1,581

* Saturated data

The online data (a total of 1,581 screenshots of photos, videos, text and emoticons, see Table 2) was collected retrospectively from the date of each participant’s PCI. More specifically, the online data collection was conducted after the interview was completed, but the time frame included in the collection ended with the date of the interview. No online data created after the interview was collected. This archival approach (Kozinets, 2015) was time-efficient and unobtrusive, since data had been created without any interference on the part of the researcher. Some of the participants did not have any accounts on social media prior to their strokes. Others had social media accounts pre-stroke, but there was a very limited amount of posts from that period. Overall, there was not enough pre-stroke data to enable any comparison between pre- and post-stroke. Thus, all data included was posted post-stroke, but some contained re-posted pre-stroke content.

Screenshots were captured of every post the participants had made on their own Facebook and Instagram “walls” (or every post on the included blogs or websites), for instance a photo and a caption consisting of text and emoticons. No posts from Facebook groups or comments made on other people’s posts were included. Screenshots were also captured of the participants’ profile pictures and information listed on their profile pages.

For all participants except Frida and Rosa, every timeline post dating back to the stroke was included. But since Frida and Rosa both produced a large number of posts, no further data was collected from them when saturation was considered to be reached, i.e. when “the ability to obtain additional new information has been attained and when further coding is no longer feasible” (Fusch & Ness, 2015, p. 1408).

Analysis

A recurrent and iterative combination of vertical (focusing on each participant separately) and horizontal (making comparisons across group) analysis (Witzel & Reiter, 2012) was performed. A postscript (Witzel & Reiter, 2012) was created immediately after each interview, in order to summarise the interviewer’s experiences. Then, the interviews were all transcribed verbatim (including errors, repetitions or other consequences of the participant’s aphasia) by the interviewer, using the software NVivo. A few short sequences were marked as unintelligible, but none of them had any significant influence on the overall understanding of the participants’ accounts. A constant comparison approach (Fram, 2013) was applied to recurrently compare new data to previously collected data.

Then, the online data was imported into the same NVivo project as the interviews. Both the interviews and the online material was coded (by the first author, who consulted the second and third authors in case of uncertainties), based on who (or what) the participants stated being and not being, how their narratives related to different phases of their timelines (pre-stroke, acute/subacute and post-stroke phases) and finally how they positioned themselves in relation to other people. For instance, an NVivo node was created for statements about “being a person with aphasia” and each statement related to that issue was coded at that node regardless of data source. This way, the interview data and the online data was analysed simultaneously.

During this process, patterns emerged (vertically and horizontally) and were clustered into themes (generating new codes). Then, the three specific dilemmas (Bamberg, 2011) were used to analyse these previously emerged themes. In this sense, and in line with the PCI methodology (Witzel & Reiter, 2012), the analysis combined an inductive (in which data was coded for emergent themes) and a deductive (in which the dilemmas were applied to the codes) approach.

Ethical considerations

Close attention was paid to the Helsinki Declaration (WMA, 1964) and to the ethical recommendations of the Association of Internet Researchers (Markham & Buchanan, 2012).

All nine participants were able to give written informed consent to participate, and did so separately for the interviews, the review of clinical records (for which permission was also granted by head clinicians) and the online observations. Regarding the online observations, the participants chose which social media sites to include. It was thus possible for them to give consent to, for instance, participate on Facebook but not on Instagram, should they want to make such a distinction.

Ethical approval was granted by the Ethical Review Board in Lund, Sweden (ref. no. 2015/109).

Results

The findings indicate that all three dilemmas are highly relevant to the participants. They construct their self-identities in terms of constancy and change (i.e. they are both the same as pre-stroke and changed), sameness and difference (i.e. they are both the same and different in relation others) and agency and dependency (i.e. they experience both being capable and incapable). Thus, the participants navigate the dilemmas through a constant negotiation about what to include in the stories of self.

In order to establish validity and transferability (Creswell, 2014), the results are reported as rich descriptions closely related to the authentic (translated from Swedish to English) narratives of the participants. The embedded quotations imitate the communication of each participant (including repetitions and errors).

Constancy versus change

Firstly, Bamberg’s (2011) dilemma constancy/change is relevant to the participants. They make a distinction between pre-stroke, acute/subacute and post-stroke phases. They describe themselves differently when relating to different points in time, by using words or phrases such as “not any longer” or “still” to create a timeline. By combining points along the timeline, they manifest constancy and change simultaneously, depending on which points are being compared.

For most participants, the answer to whether or not they consider themselves to be the same as pre-stroke is closely related to their professional identity. Only two participants, Einar and Johan, clearly express being the same person as pre-stroke. They are also the only ones still working at their pre-stroke workplaces (Table 1). The other participants state not being the same as they were pre-stroke, and are not working within their pre-stroke professions (Malin and Monica have part-time jobs in other professions, and the remaining five participants are not able to work).

Monica both identifies and does not identify with her pre-stroke profession, and the same goes for Oskar. Neither of them is able to work as a teacher any longer. When asked whether they are still the same, they both answer “no, because I am no longer a teacher”. Oskar makes a point about being so changed that teaching now would be impossible:

Interviewer:

Are you the same person now as you were before the stroke?

Oskar:

No. […] Teach/tea/teacher, no, not now.

Interviewer:

No, you can’t be a teacher now?

Oskar:

No, it’s not possible. [laughter]

Even though Oskar knows he is never going to work as a teacher again, it is still important to him to manifest his former professional identity. When asked about his pre-stroke life, he shows a printed version of his extensive curriculum vitae. He points to certificates and testimonials, saying “Here! Here!” to manifest his pre-stroke skills. He also keeps his personal key card from the school in his wallet and his old timetable glued to the inside of his diary. Due to his limited linguistic capacity, he does not use any verbal tense to state whether he wanted to say “this is who I am” or “this is who I was”, which highlights the fact that aphasia affects the ability to tell stories “when most needed” (Shadden et al., 2008). In this respect, he may be referring to either constancy or change. But his enthusiastic display of tokens from his pre-stroke life, may be seen as an effort to maintain his pre-stroke self-identity (to “keep the narrative going”). Thus, he is simultaneously the same as before and changed, both still a teacher (manifested by his display of artefacts related to his profession) and not a teacher any longer (stated verbally).

Monica, who used to teach languages (e.g., German), clearly relates her inability to work as a teacher to her aphasia:

Interviewer:

Do you think about yourself differently before and after the stroke?

Monica:

Yes, but… […] But eh… I am not a teacher anymore. Yeah, you know… German, it is [makes awkward sound]. I don’t know what it is, where it is. Well, if you started talking German to another person, yes, then I would understand. But if you should speak German to me, then I don’t think I could answer you.

Monica changes tenses when talking about her competences. When saying that it is not visible to others that she is a teacher, she uses the present tense. Then, she says “I am capable of…” but she changes her mind to “I was capable of…”.

Monica:

I can’t eh… put up a sign saying “Look, I am a teacher and I am/I was capable of this and […]” you know… No. But […] it is something you have to put up with. […]

This might possibly be interpreted as a struggle with the dilemmas of constancy/change and of agency/dependency. She seems to be negotiating with herself about whether or not she still is a competent teacher.

Ellen, who worked as a care-provider and studied to become an assistant nurse (pre-stroke), now describes herself as retired and identifies as unable to work. When asked if she has an account on LinkedIn, she answers:

Ellen:

No. I understood it is, like…it [LinkedIn] is mainly for people who work.

She also says that when new (online) contacts realise she is unable to work, they tend to distance themselves from her.

Ellen:

Almost the first thing everyone asks is “where do you work?” and I don’t know how many that stop writing when I tell them. Like, it gets all silent, and they stop contacting me.

Like Ellen, Frida describes herself as retired, but inconsistently still identifies with her former profession, i.e. being a salesperson. She says she has been a salesperson since she was a child, and that she still is. And in one respect, she still is a salesperson because she has her own online shop. The internet provides a way for her to maintain her professional pre-stroke identity. However, she knows that she is now incapable of coping with a “normal” (sic) job. Thus, she both is and is not a salesperson.

One aspect of the participants’ changed professional identity is the feeling of not being quick enough at work. Malin, who is no longer able to work as an assistant nurse but now works in a café, feels that the customers sometimes think she is too slow. Feeling slow at work is also expressed by Einar and Johan. Johan was and still is an engineer. He states that he now needs a lot more time to write, and feels unable in keeping up with the discussions at work, especially when there are several people interacting:

Johan:

If I talk to people, at the same time as other people, many people, then I can’t keep up. […] Are there five six people in a conference room, kee/then I can’t keep up to “now I will talk about this”. Then they have, then they have c/come to the next point, so to speak. Or next subject, so to speak. Damn it.

Rosa relates the experience of feeling slow to social interaction with her friends. She says her lost ability to respond quickly makes her feel stupid (which also relates to agency/dependency) and boring because she is not quick enough to understand her friends’ jokes. She gives an example of being invited to a party at her friend’s house:

Rosa:

There was this party, last Saturday […] and… then you get so bloody nervous, like even though I know them, it is still hard. […] Like, I have been a very like fun, […] a fun person, you know, which I am not today. And that’s… […] this speed, sort of. Because of this, I turn very like, it is really really really hard. It is also a loss, because I don’t understand like “yeah but hehe” but I don’t get it, but then like [sigh]. And then I’m like “ahaaaa”, you know, like that. But I may not even understand, maybe.

Interviewer:

No, I see. It is like you miss out on the jokes?

Rosa:

Yes, sometimes it’s like the joke, and then ME, and then.. It is hard too. Because I am not very quick any more, today.

This experience is shared with Frida, who states that she “used to be fun”, indicating that she now perceives herself as boring due to the loss of linguistic timing and speed caused by her aphasia. She expresses grief over her lost pre-stroke identity, as do Ellen:

Frida:

And then I can, you know, sometimes long for my, well, how I used to be before. I was fun then, you know.

Ellen:

You mourn, well, who you were, yourself. You miss your, well, the old… well […] it is a grief over the anger, that you get angry.

Monica describes feeling like the stroke turned her into a new-born baby, at the age of 31, having to learn everything all over again. Similarly, during early recovery Rosa was terrified of not being herself:

Rosa:

I had like a major panic atta/, you know, panic attack, and things like, that you just… waking up and it’s not ME.

Rosa also makes the clearest distinction between her pre- and post-stroke identity. In fact, she describes her pre-stroke self as dead and she feels so different that she is going to change her name (both first and surname):

Rosa:

It’s like […] well, the old [name], she is dead you know. That’s a loss too, you know.

She has not yet gone through the administrative process of changing her names, because she finds it hard to contact the authorities. But on Facebook, she has created a new profile using her new name. Facebook enables her to embody her new self-identity, telling a new story, while she struggles to construct her new self-identity in offline settings. Online, her biographical disruption (Bury, 1982) is an unquestionable fact, but offline she is struggling with the dilemma of simultaneously being changed and remaining the same (e.g., manifested by her old name displayed on her front door) over time.

During the acute/subacute phase, Ellen thought she was still her ordinary self and that she would recover quickly. But as time passed, she realised that she “had a disability” (sic):

Ellen:

You thought so at first. “Soon I will be back to normal”. At first you think you are normal, you know. Nothing has happened. But then […] when you realised that you had a disabil/disability, you know. I think it took me three years.

Just like Ellen, Frida also at first thought she was “normal” (sic) but later realised that she was not. Unlike Ellen, however, she considers her new self to be a better person.

Frida:

At first […] when I got ill […] When I was, maybe three years, then I was very… then I wanted to tell to everybody that like “I am a normal person! [..] I am like the old [Frida]! It is me!” And then I was very… But then, really, I think I thought that “that’s not actually true” and now I have realised that I AM another person. I am a BETTER person now, than I used to be.

These accounts given by Ellen and Frida about realising after a while that they are never going to be “normal” again can in several ways be understood in terms of Bamberg’s dilemmas. Ellen and Frida make comparisons over time, which means they are navigating the constancy/change dilemma. They also navigate the sameness/difference dilemma by addressing the question of which categories they include themselves in – “normal” or “disabled”.

Sameness versus difference

Secondly, Bamberg’s (2011) dilemma sameness/difference (in relation to others) is also relevant to the participants. For example, they construct their self-identities as both “disabled” and “normal”, i.e. simultaneously expressing sameness and difference in relation to the “disabled” and to the “normal” population. At the same time, they express simultaneously being neither “disabled” nor “normal”.

To various degrees, the participants describe an ongoing negotiation of rejecting or incorporating their disabilities into their self-identities (Watson, 2002). In terms of Bamberg’s dilemmas, this process can be described as a struggle between sameness and difference in relation to different groups (“disabled people” such as stroke survivors or people with aphasia, and “normal people”).

Frida, for instance, sometimes embraces her disability identity. As briefly mentioned above, she uses her pre-stroke skills from being a salesperson. She makes and sells bracelets (online) with phrases like “Stroke Survivor”, implying that being a survivor is an important part of her new identity. On the other hand, she sometimes conceals her disabilities. She previously had an account on a dating site, in which she says she did not display any signs of aphasia or of having had a stroke (see also Taubner et al., 2017)

Frida is 41 years old (33 at onset), but feels tired and unable to do things in the same way as before, which makes her feel “like an old lady”. Thus, Frida expresses simultaneously being and not being the same as other stroke survivors, and also being young but feeling old.

Like Frida, Ellen regards herself a survivor. In fact, she has her leg tattooed with a stroke symbol and the word “Survivor”, which she also has displayed on a Facebook picture. She is a board member of a stroke-associated organization, which is appreciated because of her being only 24 years old at onset, which is unexpectedly young (see e.g., Röding, 2009). Thus, she identifies as a stroke survivor but is simultaneously aware of her difference from other survivors because of her young age.

Similarly, when Rosa had her stroke at 25, people did not (according to Rosa’s own perception as related during the interview) seem to realise what was happening. She felt that nobody (including hospital staff) understood she was suffering from an ongoing stroke:

Rosa:

Like, it was bloody awful, you know, I know that something is wrong, but […] I couldn’t… like, stand up, I couldn’t do anything, so I just lay there like… […] And then I woke up, […] Nobody understood that I was having a stroke, you know.

This may be understood in terms of other people’s lack of knowledge about the possibility of a 25-year-old woman having a stroke, and their categorisation of her as different from the “typical” young stroke patient (see e.g., Röding, 2009).

When attending an aphasia course, Sofia was by far the youngest participant. She is frustrated and repeatedly says that she is aware of her unusually young age (“twenty-nine” refers to her age at onset):

Sofia:

Sometimes, cry you can do. I am not the one who [makes crying sound] and like that. BUT… sometimes there has been a cry that is like [hits the table] “what is this? why does it take so long?” Look at… and then I have cried. […] “why, why, why? Why me? Twenty-nine. Why?”

Unrelated to the age issue, the most explicit accounts of sameness specifically about aphasia are told by Malin and Sofia. They are active members of their respective local Aphasia Association groups. They both say it is nice to meet people in the same situation, especially because they laugh a lot and feel connected:

Sofia:

Much laughter. Look at me, but I am like you.

Likewise, Ellen, Sofia, Einar, Frida and Oskar are members of Facebook communities for stroke survivors or people with aphasia. Ellen clearly expresses relief when meeting other stroke survivors online, because she does not have to explain things to them:

Ellen:

I have made a lot of new friends who also had stroke, like on Facebook and… we have this [Facebook group for stroke survivors]. […]

Interviewer:

And what’s that like, meeting others who have been through the same thing?

Ellen:

It’s great! […] I can sit here and… like… explain to you…

Interviewer:

… and I still wouldn’t understand…

Ellen:

… and you don’t get it. […] But, they really know […] So that’s really nice.

Ellen and Sofia both had their strokes in close relation to giving birth. Their respective post-stroke life is characterised by being a young single parent while recovering. Both describe a sense of failure as mothers, and Sofia most clearly relates this feeling to her aphasia. She is frustrated about not being able to read bed-time stories to her daughter:

Sofia:

[Daughter], so wants her be/bedtime book when she sleeps. Me! Okay… Puts book up. “blmobmlombmlbo” [makes weird sound]. Eh, you know, right now not so good. [laughter] I try again. “Once upon a, blmobmlombmlbo”. No! Then, try again. You know, it is step by step by step by step, for her too. So, she’s learning, like “that’s just [Sofia], mum”.

Although Ellen and Sofia struggle with the feeling of failed motherhood, their Facebook profiles almost exclusively depict happy families with playing, laughing or cuddling children. Not only is the feeling of failure as a mother a matter of the sameness/difference dilemma, but also of agency/dependency.

Agency versus dependency

Finally, Bamberg’s (2011) third dilemma (agency/dependency) is also relevant to the participants, most clearly manifested in terms of a dilemma of on one hand not being stupid, and on the other being perceived as stupid by others. For instance, the close relationship between language and (perceived) competence, and how the loss of linguistic skills makes her feel stupid, is clearly expressed by Malin. Since the stroke, she has experienced difficulty spelling, which makes her feel stupid. She can no longer solve crossword puzzles, should she want to, not even those aimed at children:

Malin:

If I, what called?//gross, co, no! what called… crot, wor, if I shall do… you know, ki/kids. They have eh… [draws grid on paper] eh… will has eh/at home. What called? Cro…wo.

Interviewer:

Aha, crossword puzzle.

Malin:

Yes. Kids who make, and I can’t! [laughter]

Interviewer:

No, right… Did you solve a lot of crossword puzzles before?

Malin:

No… but eh, it happeneded. But, now… now. No, NOT possible.

In this case, Malin is not fighting the perceptions of others, but rather her own self-identity. She seems to struggle between knowing that she still is competent and feeling incompetent due to her language difficulties.

Sofia expresses frustration over being diminished, not by herself, as in Malin’s account, but by others. She feels that they look at her with pity as if she were a little girl:

Sofia:

Sometimes you see on their eyes, on their face, that I see that… [makes a humiliating sound], like, and just…

Interviewer:

That they feel sorry for you?

Sofia:

Yes, or… and “little girl” and like this…

Similarly, during early hospitalisation, Johan could not speak at all, but he could follow instructions from the clinicians. At the same time, he felt as if they were talking about him as if he were absent. He says that since he followed their instructions, he assumed that they would realise that he understood what they were saying. Instead he felt ridiculed. The dilemma of agency/dependency becomes clear, since the clinicians treated Johan simultaneously as capable and incapable.

Johan:

The fact that some clinicians, they presumed that I couldn’t even/because I couldn’t speak that I didn’t understand anything. […] You have to do these exercises to see if your stroke has become good or better, like that. And I always did, then. And they said so. So THAT they could talk to me about this, but then, one moment later, like “and also I am plain stupid”.

Frida assumes, when telling people about her brain injury, that they picture her as stupid. Therefore, to avoid being seen as stupid when communicating on a dating site, she says she used to conceal information about her stroke and aphasia (as mentioned above).

Some of the participants have experiences of being perceived as drunk, which relates to the dilemma of agency/dependency since “drunk” may connote “incapacitated”. For instance, Ellen makes jokes about other people thinking she might be drunk. She tells a story about meeting a woman, who probably thought she was drunk, at the pharmacy:

Ellen:

Like after six months, I met someone I knew, at the pharmacy, and she was like “Hi! How are you?” and I was like “Well…” and kept talking as usual, instead of just telling her. And my speech was slurred and you know… and then, what does she think? She must have thought I was drunk or something. [laughter] Instead of just telling her, you know…

Even if Ellen is worried that others might perceive her as drunk, she seems to prefer that to revealing her stroke and aphasia.

When Malin’s stroke occurred, she was outdoors. People stopped to help her and called for an ambulance, which on arrival was accompanied by the police. The officer asked her if she was on drugs.

Interviewer:

The police came? […]

Malin:

And they said “What have you eaten? Pills or not?” [laughter]

The situation was similar for Rosa, but with the difference that she, pre-stroke, actually had been using drugs. When her stroke occurred, she felt that the clinicians did not take her seriously, which she explains by the fact that they knew about her previous drug use.

To conclude, the participants express still being intelligent yet having to deal with other people’s prejudices about language disability. However, in some situations they rely on others to help them. Thus, they struggle between on the one hand being dependent on others (dependency) and on the other still feeling capable and competent (agency).

Discussion

The findings show that all three dilemmas are relevant to the participants. They navigate the dilemmas by constantly, both online and offline, negotiating what to include in their stories of self. Thus, this study adds knowledge to the hitherto “limited understanding of the impact of the loss of the communication tool on narrative self” (Shadden et al., 2008, p. 11) and complexity to previous studies about aphasia and identity (e.g., Bronken et al., 2012; Shadden, 2005) by including online aspects.

In most of the stories of self told within in this study, the dilemmas are closely related to aphasia. For instance, the participants relate aphasia to the agency/dependency dilemma. Their linguistic difficulties entail a feeling of being diminished, ridiculed and stupid. In this sense, their stories support the aphasia definition suggested by Kagan and Simmons-Mackie (2013) that emphasises that aphasia “masks inherent competence”. The participants struggle to keep a narrative going about being capable and competent, despite being seen as incapable and incompetent by others (and sometimes themselves).

Although we are not able to make any closer comparisons to Glintborg’s (2015) study, since the linguistic capacity of her participants is unknown, our findings may add some complexity to her findings, regarding sameness/difference. The participants in her study stated being “disabled and not normal”, but the participants of our study construct self-identities in terms of both being “normal” and “disabled” (sometimes manifested as being neither “normal” nor “disabled”). Thus, it seems that the stories of self told by the participants in this study are somewhat more complex than the ones told by the participants in Glintborg’s study. On the other hand, our findings support Glintborg’s (2015) findings regarding constancy/change. Our findings, as well as Glintborg’s, show that the participants simultaneously are the same as pre-onset and changed.

Furthermore, this study may add some complexity to the ideas presented by Watson (2002). In his article, people with disabilities are suggested to either incorporate or reject an identity as “disabled”. Our findings regarding the sameness/difference dilemma show that the re-negotiation process is more complicated than simply a question of incorporation or rejection. The participants in this study are both disabled and normal, and they move in and out of these categories depending on context and time since onset.

Intertwined dilemmas

The relation between the dilemmas is complex. They are intertwined and (as Bamberg (2011) suggests) the dilemma of constancy/change is superordinate to the other two. For instance, both Frida and Ellen discuss the struggle between rejecting or incorporating disability into their self-identities (cf. Watson, 2002), and how their strategies have shifted over time. It becomes clear that the constancy/change dilemma is a result of the other two (sameness/difference and agency/dependency). The question of being changed, or not, is a result of a process over time, where the re-negotiation of self has taken different turns throughout their stories. It is in retrospect – when describing how they thought they would soon be “normal” again but later came to realise that they are now “disabled” – that the question of constancy/change is answered, with the dilemmas of sameness/difference and agency/dependency as waypoints along the timeline. This is also clear when Monica and Oskar relate to (not) being teachers. Whether they are the same or not (constancy/change) is a consequence of whether or not they are teachers (sameness/difference and agency/dependency) at certain points in time.

Within each dilemma, there are also embedded dilemmas. Sameness/difference, for example, is not only a question of being the same or different as (for instance) “disabled” or “normal” people – it is also a question of the category in relation to which you prefer expressing sameness. When meeting a friend at the pharmacy, Ellen prefers being seen as drunk to revealing her stroke and aphasia. This may be interpreted as an ongoing struggle concerning which categories to include herself in, and whether or not to incorporate stroke and aphasia into her self-identity. Her dilemma of sameness/difference thus results in a question of which “difference” to display. On the other hand, in some settings she presents herself as a stroke survivor, which adds to the complexity by introducing a possibility of behaving differently within different social (online or offline) settings.

Online versus offline

We argue that offline and online settings evoke different ways to navigate the dilemmas, supporting Turkle’s idea that “life on the screen” adds multiplicity and flexibility to the ways we think about identity (Turkle, 1999). The internet provides an opportunity to tell online stories of self that are different to those told offline. For instance, when Rosa wants to change her name, she creates a new Facebook profile long before contacting the authorities. Hence, her online narrative starts from scratch while offline she continues to struggle with who she is.

Similarly, when Ellen and Sofia choose pictures to post online, they display happy families, even though offline they feel like failed mothers. Online, their narratives are about being strong, capable and happy, but offline they are about grief, pain and frustration. Their online narratives are not only more similar to their respective pre-stroke self, but also to the contemporary socially anticipated online behaviour (see e.g., Forsman, 2017). Online, they are the same as any “normal” mother, but offline they feel different to “normal” mothers.

Furthermore, the internet also provides an opportunity for the participants to be engaged in communities for stroke survivors and/or people with aphasia. These online forums provide additional settings where the participants are able to experience and express sameness rather than difference.

Limitations and further research

To highlight the specific aspects of aphasia we have selected accounts related to communication, while being aware of the difficulty in distinguishing the consequences of stroke in general from the aphasia. Even if we, as researchers, would like to make that distinction, the participants do not, since it is one and the same incident to them. In this respect, we advocate future interdisciplinary work, in order to cover a wider range of identity issues related to both aphasia and stroke.

Methodologically, the triangulation of data collection methods (i.e. interviews and online observations) was chosen in order to establish credibility (Lincoln & Guba, 1985) of the results. Only using one of the methods would not have been sufficient to capture both online and offline issues, which leads us to argue that this combination should be used in future research about self-identity when living in a digitalised society.

Since it was not possible (due to lack of pre-stroke data) to make any comparisons between pre- and post-stroke online material within this study, we suggest further research in which having had accounts on social media before the stroke is set as an inclusion criteria.

The participants volunteered after seeing our advertisement or having been prompted. Therefore, they cannot be seen as representatives of the entire Swedish population with aphasia, especially not of those with more severe difficulties. The sample, and thus the results, may also have been influenced by various “gate keepers” (Creswell, 1998). They (speech- and language therapists, representatives of the Swedish Aphasia Association and previously recruited participants) presumably only recommended “well-functioning” individuals for participation.

Consequently, even though we have explicitly only included people with aphasia in this study, we are part of a scientific society that has yet to meet the challenge of giving voice to those most in need of one. We therefore argue that the discussion about including people with (severe) aphasia in research (see e.g., Brady et al., 2013; Dalemans, Wade, van Den Heuvel, & de Witte, 2009) should be expanded to address issues of recruitment and gate keepers.

Since the sample is limited and information about the severity of their aphasia is scarce, we suggest further research based on a larger number of participants, with more specifically reported aphasia characteristics. Furthermore, we suggest further research to investigate the influence of gender, socio-economic background or ethnicity on self-identity in people with language disabilities such as aphasia.

Some of the participants relate not being the same to the lost ability to maintain their professional career, and we therefore also suggest further research to highlight the specific relations between acquired language disability and professional identity.

Clinical implications

This study has highlighted the complexity of identity construction when living with aphasia in a digitalised society. The stories of self vary over time and between (offline and online) contexts. In addition, the stories may be contradicting. When meeting people with aphasia, awareness that they may be struggling with these self-identity dilemmas should be of value.

To address this, researchers and therapists need to listen closely to the complex narratives of people with aphasia. Previous research (e.g., Corsten et al., 2014) implies that telling stories of self may be an important rehabilitation tool. Thus, our findings are useful for clinicians when working with such interventions. For instance, the dilemmas may be useful for understanding the contradiction between on the one hand wanting to return to a lost pre-stroke identity and “keeping the narrative going”, but on the other struggling to accept the post-stroke (disabled) identity and tell a new story of self.

Several of the participants in this study state that their identity re-negotiation went on for several years post-onset (and is still going on), and that their self-identity shifted along the timeline. This highlights the fact that recovering takes a long time and that identity related therapy is a matter of persistence.

Increased knowledge about online aspects of identity construction should also be of value. Online multimodality provides additional ways to communicate, and hence tell the story of self, beyond the spoken (or written) words. Especially if the individual with aphasia was actively using the internet (including social media) before onset, keys to identity re-negotiation may be found online.

Since aphasia entails difficulties telling stories of self, it is not only crucial to recognise the importance of identity issues in therapy, but also the importance of therapy for identity issues. When recovering linguistically, the ability to “keep the narrative going” will also recover and the person with aphasia will be better equipped to handle self-identity issues outside therapy.

To summarise, what we hope to have added to previous work (by e.g., Corsten et al., 2014; Shadden, 2005) is the insight that people with aphasia may be both the same as pre-onset and changed; they may be both the same and different in relation to other groups, for instance manifested as both “normal” and “disabled”; they may display both dependency and agency. And, they may tell another story of self online than they do offline.

Disclosure statement

No potential conflict of interest was reported by the authors.