The unexpected other: Challenges and strategies after acquired impairment

Abstract

People experiencing traumatic brain injury or multitrauma will often live with problems in functioning for a profound period in life. A situation of great complexity emerges involving both the experience of an impaired body and the experience of a changed social position. This article addresses the intricate relations between the altered body, personal ambitions, and social surroundings in the first 2–3 years after an injury. The conceptual framework centers around the process of change, applying concepts such as the unexpected other and biographical reconstruction. Twenty-one people of working age were interviewed two times. All interviewees had experienced traumatic brain injury or multitrauma. A thematic narrative analysis was applied. Consequences of the injury took place at a carnal level where fatigue is something completely different from becoming exhausted and where elimination of body waste takes place through practices novel to the injured person. Living with impairment also took place at the level of social interaction. Here, family relations, shame, and establishing a new identity seemed profoundly important. This article makes two novel contributions. First, it emphasizes more than previous studies do that the daily management of altered body functions is more important for independence and wellbeing. Second, the article identifies the narrative about the accident as an important issue for injured people to settle.

Keywords

chronic illness and disability experiencing illness and narratives illness behaviour

Introduction

People seriously injured in accidents often suffer traumatic brain injury (TBI) or multitrauma. These are disabling conditions that affect several aspects of everyday life, including social and vocational participation (Braaf et al., 2020). Brain injury can impair cognitive functions and self-awareness (Bach and David, 2006), but the consequences of this impairment are poorly understood in the context of the final phase of rehabilitation when social reintegration takes place (Douglas et al., 2015). Harvey (2018) even concludes that the consequences of brain injuries such as TBI are chronically underexplored. Multitrauma causes body lesions that affect mobility and anatomic functions. Despite a growing literature on the consequences of living with multitrauma, this is an area of rehabilitation that is still not well understood (Hartog et al., 2020). Both TBI and multitrauma often strike people of working age who have several years left of productive work. Hence, recovery and coping processes in dealing with TBI or multitrauma are exemplary cases for in-depth investigations of the lives of people with complex and long-term health problems and impairments who need rehabilitation.

Previous studies on the social consequences of TBI and multitrauma have highlighted the balance between the pre-accident self and the post-accident self (Braaf et al., 2020; Fadyl et al., 2017; Levack et al., 2010; Rosenberg et al., 2020). Common to the analyses is the loss in body control and social participation experienced after sustaining the injury. The studies also emphasize the need for abilities to find one’s way between the possibility of regaining the life one had pre-injury, and the need to adjust to the new circumstances in life. One part of this adjustment to new circumstances can be to develop a new sense of self. Further, the process of learning how to live with the physical and cognitive consequences stands out as important (Kralik et al., 2006).

Most studies of TBI and multitrauma have been conducted at one point in time, but the rehabilitation process after injuries resulting in serious impairments is complex and subject to fluctuating moods when handling the consequences. Hence, both Kralik et al. (2006) and Fadyl et al. (2017) have emphasized the need for longitudinal studies in order to understand the transitional process that is at stake for accident-injured people. There is a need to meet people more than once to gain insight into the process of dealing with the consequences of TBI or multitrauma. Hence, this article addresses the intricate relations between the altered body, personal aspirations and social surroundings in the first 2–3 years after injury. In all, 21 accident-injured people have been interviewed at two times in their rehabilitation trajectory, the first time a few months after the injury, and the second time 2–3 years post injury.

People with impairments need to find ways to live with the impaired body as a biological unity filled with strong and often chaotic powers as they seek self-determined lifestyles. (Siebers, 2006). The reality of the impaired body is mediated by language and meaning making. Often concepts of estrangement and a feeling of otherness are applied. According to Frank (Frank, 2013: 27), the hardest aspect to catch in illness stories is that of the body creating the person. Hence, much needed are studies where the conceptual apparatus of social science is further applied in order to expand the understanding of the experience of, and adjustment to, an altered body (Sherry, 2016).

The relations to health professionals are only one part of the social connectedness that contributes to life quality and well-being among people with impairments. Relations to the public, to family, to friends, and to the workplace are important contributors to how life with impairment can be lived. These relations are captured by the concept of the dyadic body, as opposed to the concept of the monadic body, where the body is understood as alone and for itself (Frank, 2013: 36). The social complexity of the dyadic body and a sudden onset of impairment give rise to the research question: How do people impaired by injury face the confrontations with body functioning and social networks in the first years of living with an altered body? In their review of qualitative studies on TBI, Villa et al. (2020) emphasize that in-depth understanding of recovery and social reintegration is important for rehabilitation professionals in their efforts to assist people in their rehabilitation processes.

Theoretical perspective

Arthur Frank (2013: 30–52) theorizes the disruption brought on by the onset of impairment. He points out the predictable body, reaching its highest expression in ballet, at one end of a continuum. At the other end is the contingent body to be found, most clearly represented by the infant body. When there is a sudden onset of contingency, the consequence is a body that seems to let one down. There is a serious threat to the stability and security in life. A body that does not walk, is inactive because of fatigue, or does not remember in the social interactions of daily life, comes into being (Kleinman, 1988).

The concept of biographical disruption is widely used to understand the process of coming to terms with the consequences of injury (Bury, 1982, 2001). According to this perspective, a first stage is to find out what is going on with the altered body. This process is based on both gaining medical knowledge and coming to terms with the personal experience. However, the situation confronting an injured person is not one of total loss and estrangement. A recovery narrative emerges through a communicating body, and relations to the health services are established (Frank, 2013). This second stage is “a fundamental re-thinking of the person’s biography and self-concept” (Bury, 1982: 169). Malabou (2012) has used “the unexpected other” as a term to formulate this stage in the experience of disruption. In her perspective, there is a deep cut in the biography, where a new subject emerges. This subject has no childhood, no youth and its situation is to be “an ontological refugee” (2012: 24). In the third stage, there is a response to the biographical disruption by mobilizing resources in managing new conditions in life. The biographical disruption caused by the injury can be met with biographical repair and reconstruction, where control is restored and a new identity and meaning in life are found (Locock et al., 2009).

To address descriptions of serious illness and injury as biographical disruption and loss of self, Hammell (2006) introduced the term “biographical reconstruction” which encompasses the processes of learning and reframing following the onset of chronic illness. Biographical reconstruction highlights the work being done both by patients and by rehabilitation professionals in order to explore how post-injury life can be lived. The organization of daily living and family relations, work-place adaption and processes of understanding the impairment and disability experience as a different way of living are highlighted. These matters add to the often-used rehabilitation goal of returning to a life like that which preceded the onset of chronic illness. Such reconstructions are characterized both by adjusting one’s values and goals in life, and by finding a new window of possibilities for oneself (Buetow et al., 2019).

Methods

This was an interview study that was part of a research project studying the process of transition from specialized hospital rehabilitation to municipal health services and work-life inclusion services. To gain insight into social reintegration in the later phases of rehabilitation, a qualitative approach was found well suited. People recruited for the study suffered from multitrauma or TBI. All gave their informed consent to participate in the study after reading an introduction letter that introduced the study and clearly stated their right to withdraw at any time in the research process.

Staff at two hospitals in Norway who were responsible for treating TBI and multitrauma patients were asked to recruit people who were in an early phase of their in- or outpatient rehabilitation programs. For patients with severe TBI, the staff followed special guidelines regarding which patients were eligible for the study. The considerations were based on patients’ vulnerability caused by their problems in cognitive and emotional functioning. For participants with mild-to-moderate TBI treated at an outpatient clinic, there were no specific guidelines, but all these patients had persistent post-concussion symptoms and a protracted course of recovery. When patients were contacted by staff, it was made clear that participating in the study would not influence their treatment program and relations to staff. Most interviews were conducted by the second author, a woman 30 years of age, not employed at any of the hospitals. Interviews took place at sites chosen by interviewees. These included the hospital, the home or the workplace of the individual, and a university office. The study was approved by the Regional Committee for Medical and Health Research Ethics—South East Norway, and by the Data Protection Officers at the hospitals.

To some injured, the consequences of TBI were the main impairment. To others, body lesions such as spinal cord injuries or amputations, were the main impairment. A first interview took place between one and six months after the injury. Here, we wanted to gain insight into how the initial phase of the illness trajectory was experienced. Due to the severity of the injuries, the consequences cannot be fully understood in the initial phase of the trajectory. Therefore, a second interview was carried out between two and three years after the first interview. This time span gives the opportunity to reflect about an important period for establishing a life with an altered body, as well as about how the consequences of a serious injury are dealt with at the time of the interview (Fadyl et al., 2017; Solomon et al., 2019).

A topic guide framed the meetings between researcher and injured person. In the first interview, the guide contained questions about the accident, healing processes, health services, return to work, and relations to family and friends. The second interview introduced themes of how family life was managed, relations to friends, relations in public, adjustments to vocational tasks, the experience of health and social services, and to what degree a new way of living and a new identity were enacted.

Apart from the consideration by staff to exclude those deemed most vulnerable, the sample is a convenience sample of patients 18–67 years old (Table 1). When compared with the overall population in Norway with comparable issues, the sample has the same level of return to work. The sample deviates from the overall population with comparable issues as follows: the sample has a higher level of education, includes more women and has a smaller proportion of traffic-injured subjects (Soberg et al., 2007, 2011). None of the participants were of non-Western origin, but two had immigrated from other European countries. All participants were enrolled in the Norwegian public healthcare chains. At the time of the first interview, participants were under treatment by specialized hospitals. At the second interview, participants were clients in the municipal services, and some received additional follow-up services from the hospitals. The municipal services are provided by general practitioners, municipal physiotherapists and occupational therapists, work-inclusion services, caseworkers and assistive technology providers. All these services are publicly funded and free of charge. However, some have small user fees.

Table 1.

Characteristics of injured individuals interviewed.

Characteristic	Subgroup	Number of individuals
Gender	Male	11
Gender	Female	10
Age group at first interview	20–29	3
	30–39	5
	40–49	4
	50–59	6
	60–69	3
Level of education	Not known	1
	Primary/secondary/vocational	11
	Tertiary	9
Cause of injury	Traffic accident	7
	Fall	7
	Horse-riding accident	3
	Assault	2
	Mechanical force	2
Impairment type	TBI	9
Impairment type	Multitrauma	12
Employment status at second interview	Returned to work – full time	6
	Returned to work – part time	5
	Unsettled	9
	Old-age pension	1

The analysis followed the principles of thematic narrative analysis as outlined by Riessman (2008). All authors closely read and annotated the interview transcripts. As a second step, the first author made a two-page summary of each person, based on both interviews. The analysis proceeded with going back and forth between the summaries and the transcripts. The presentation of the results from the analysis was organized in a narrative form, as suggested by Braun and Clarke (2006). Hence, in the findings section, five units structure the stories told, starting with managing fatigue and followed by handling intimacy, tightening the leaking body and understanding the accident, and ending with changes in the understanding of self. The development of the units took place in dialogue with the theoretical perspective. Hence, the body’s letting one down has inspired the way practicalities of daily life have been framed, and the rethinking of biography and self-concept is applied to frame reflections of handling the new situation in life.

For studies on health issues funded by The Research Council of Norway, a form of user involvement is obligatory. Six people, injured, or relatives of injured people, were recruited through a patients’ organization and a disability NGO. They formed a panel that gave advice on issues such as recruitment and handling distress in the interview situation. The panel was also presented with preliminary findings, on which they responded, often emphasizing that injured people, as in the interviews were still in a process of coming to terms with living with an impairment. All panel members had lived with disability for more than 10 years and their discussions with researchers contributed to the trustworthiness of the study (Romsland et al., 2019).

This study has potential limitations. In the longitudinal design, the first interview was conducted a few months after the accident and the second interview 2–3 years after. A third interview 1 year after the accident would have captured the process of biographical reconstruction with greater accuracy. The exclusion of subjects considered vulnerable by hospital staff limited the insights into this subgroup. Finally, the lack of subjects with non-Western immigrant backgrounds in the sample limits the scope of analysis.

Findings

People interviewed for the study can be divided into two groups. The first group consists of the ones for whom the consequences of a paralyzed or amputated body are the main challenge in everyday life. The other group consists of the ones for whom the consequences of the brain injury are the major problem for their functioning. What both groups have in common is how the impairment gains meaning in social interaction.

Fatigue management

In the narrations, fatigue is the main impairment among people with brain injuries. They take great care in explaining that they do not experience fatigue the way all people do. Prior to their accidents, the experience common to all people was the only way they knew of being tired, or of not remembering things. Maria, a brain-injured woman put it like this:

I feel intensely worn out in a way I have never faced before. I am not physically exhausted; I am not short of breath or something like that. I only want to close my eyes. I will just not watch anything. I would be happy not having to see. I do not feel that I am tired and want to sleep. Even though, if I lay down on the sofa, I fall asleep most times. However, it is another form of tiredness, an exhaustion I struggle a lot with.

In the same vein, others point out that memory problems are different from problems remembering names preinjury, and that headaches are different from those one gets when having the flu. Maria further tries to explain the fatigue by referring to her aversion towards objects in high numbers and busy environments. When disembarking from trains, she waits on the platform for the other passengers to disappear before she walks along the platform and into the station building. Even walking in the woods is tiring because there are so many trees there. She prefers hiking in open landscapes.

Social interaction puts another layer on the fatigue experience. Christine, brain injured and married with two school-aged kids, explains how the fatigue interacts with family life.

It is difficult with the kids. They do not fully understand. Their friends call at the door. I have been ill for such a long time that I think they must be allowed to have friends visiting. For them it is about keeping their social network. When my husband returns from work, he says: “Have you said yes now again?” He does not like it, and we start arguing. I just want the kids to have a good time. That balance is difficult. My husband thinks I am a fool for letting them in. He asks them to leave, but then they have been there for three hours.

Interviewer: He protects you?

Yes, I feel he is trying, but not in a tender, loving way. He is first and foremost irritated, but he means well.

Family life is affected not only regarding visitors. Most important are household tasks where the spouse will have to take extra responsibility. How such tasks are to be handled when returning to work is a further issue. Christine again:

You must balance between rest and activity. Between things that are meaningful to you and things that are favorable to your family. Everything is connected; you cannot leave out one thing from your life without consequences for another part. My being active at work is not necessarily negative for my family.

The balancing act also comes up when being with friends. John, a man affected by multitrauma that causes both paralysis and fatigue, points out that drinking alcohol makes him shaky and spastic the day after, but he feels drinking alcohol is worth it. He wants to keep contact with friends and avoid “being a diagnosis at parties.” If this is the case, “Then you lose your friends and acquaintances.” An otherness has emerged, in this circumstance, spasticity after drinking alcohol. There is a possibility of taking care, or avoiding drinking, but in John’s opinion, doing so results in discrimination and social rejection. To him, the otherness of spasticity is preferred. It emerges the day after, at home, and does not interfere with his social life outside the family.

Handling intimacy

Stories about intimate relations are mostly told as forms of loss. One example is Peter, a young brain-injured man ending his cohabitation because he feels fatigue is turning him into an inadequate partner in an already established romantic and intimate relationship. Another example is that of John responding to the question if his relation to his wife has changed:

There are other forms of dependency, some things we are not able to do. There is less physical contact, it does not work out the way it did before.

Interviewer: Do you mean sexually?

Yes, that is . . . that is gone. It is a negative thing. She expresses a longing for cuddling and care, but it can be physically unpleasant with my condition. That limits the intimacy. It is understandable when you describe it, but it is not easy to accept its consequences, especially for her.

The other has emerged in the form of a body that reacts negatively to cuddling and the sexuality is perceived to be gone. There are, of course, also stories about enjoyable intimate life after the injury. The most direct way they are told is in the form of narratives about meeting a partner when living with the consequences of the injury. For some, it comes as a surprise that they are attractive as partners even with impairments such as amputations and fatigue.

Another way of telling the story about intimacy after one’s accident is to address the daily practices of care and help. Karin, in her late fifties, is affected by multitrauma and paralyzed from the chest down. She talks at length about how she and her husband balance the two types of relations: as care attendant and care receiver, and as affectionate partners.

I am lucky to have a husband who is pleased to be with me, but he needs some spare time, too. He tends to become my personal assistant in the evenings. I try not to put too much strain upon him. For a long time, he rotated me during the night, but he cannot do that anymore. We need to function as a couple as well. Then he cannot be my home nurse. He does not want that, and I do not want that either.

Karin also presents a detailed description of how help with practical daily household tasks is negotiated. Her husband can encourage her to ask a few more favors, but then she must leave him alone for a couple of hours. She also must handle the presence of dust in their home differently than before. In these various ways, an otherness of reliance emerges. It also becomes clearly demonstrated that relations are not only about feelings. Intimate relations are also enacted through the everyday tasks we perform.

Tightening the leaking body

When speaking about their impairment and daily struggles, the iconic image of the wheelchair user in front of stairs on his or her way to the polling station vanishes. The storytelling does not address issues about accessibility regarding the built environment. As Karin put it:

You should know that not being able to walk, that is the smallest problem. It is all the other things. Arguing with the local welfare administration, with municipal home services. And then there are all these . . . I have had a colostomy. (. . .) Here I am, and I cannot walk. There is a solution to that. That is why they feel sorry for me. Not because of my fights with urine and feces.

Interviewer: No, not many people know about that.

No, exactly, and I prefer to keep it that way. So, I say: “Well, my arms hurt, but we try to manage that.” The rest is nothing to talk about.

Another woman, Maria, in her early fifties and paralyzed from the waist down, is not reluctant to talk about tightening the leaking body, but embarrassment is central to her narration as well. When the interviewer asks her about how she experienced having a colostomy, she is very clear.

It is two different worlds. I do not understand why this is not done routinely for people with injuries like mine (paralyzed from the chest down), at the same time as they do spine surgery. It is very humiliating, I think, to need help every day to use the toilet. Now I can do everything myself, I do not have to be afraid of leaking, as I did earlier. For example, if I passed gas, I did not know if more than air came out, or what, and if the smell did not go away, it was like, “I have to go in and check.” If nothing, “Ok then.” I did not experience leaks, but I was scared to death to have one. It would have been such a social downfall. I do not think I could have lived that way. No, I would not have dared to return to work without the colostomy. However, each of us must make this choice.

Again, there is otherness and forms of choice. In this case, either to keep one’s body intact, but needing help to manage routines of secreting urine and feces, or to have this part of one’s body waste rerouted to a container. Maria points to the colostomy as a default solution that should be offered to everybody. In other reflections, she concedes that this is a decision with important consequences and refers to the rehabilitation hospital’s introducing a wide variety of ways to handle body waste for her to evaluate. This decision depends on a wide range of factors; Maria holds up age as important. People younger than her may want to keep the body intact in order to retain its attractiveness to an intimate partner.

Understanding the accident

Several interviewees were unconscious in the acute phase following their injuries. They have no direct knowledge about who helped them or about the drama of ambulance transport, in some cases by helicopter. They are disappointed about not having been awake in that life-changing moment. Wilhelm, a man in his fifties, is curious to know more about what happened around him when he was injured in a bike accident in the city. When the interviewer asks him why it is important for him to know more about what happened after he passed out, he first goes on to point out all the details he wants to know more about: Where did he land in the street? Who were the passers-by that took care of him? Did they perceive him as awake or not? How long was he lying in the street before being dragged onto the pavement? Who moved his phone to his rucksack? And who returned the rental bike to a stand? In the final part of the reflection, when asked again by the interviewer, he concludes that what is important for him is to gain “a bigger picture that maybe would have given me a broader understanding of the whole thing, that’s the way I am thinking.”

William’s life has been altered by the accident. He suffers from fatigue, has heightened sensitivity to sound and light, and has other bodily characteristics of TBI. He wants to know the full story of the other William that emerged right from the moment his head slammed into the street. In a way, he seeks the reality of the accident. What happened to him in that fateful moment? To learn to live with the brain-injured other, he needs to know more about who they were, the ones who assisted on the occasion when the other emerged. There is also a moral dimension to the becoming of the other. Wilhelm underlines strongly that he always uses a helmet when biking, also when riding rental bikes from stands around the city. The day the accident happened was an exception because the bike ride was unplanned.

Ingrid is a woman affected by multitrauma, but she recovered after a few months of intense training. She was injured in a hailstorm, found out that in her local community she was accused of being stupid enough to stand under a tree in thunder and lightning, and even bring her kids with her.

When I returned home and became aware of these rumors, I elaborated in close detail on Facebook. I wrote what happened. I also wrote that I knew about the rumors, but that they were completely wrong.

People in the local community cast Ingrid as a person she does not want to be, or does not believe she is. In this case, the remedy to fight these stigmatizing attitudes is not physical rehabilitation, but information control. She uses the targeted self-publishing opportunities of social media to communicate effectively her own version of the story. In this way, she restores herself as a caring mother not taking unnecessary risks.

Talking about the accident is not important for all injured people we met, but for those who find it important, Ingrid and William represent the two ways the story about the accident gains importance. In both cases, relations to other people appear to be decisive. This moment of an emerging other as part of oneself is created through the relations to other people, either as first aid providers or as evaluators of possible risk-taking behavior.

Changes in the understanding of self

One way of dealing with becoming another is to wait for the old self to re-emerge. This way of thinking was represented by people with TBI as their main impairment, where there is a possibility for the brain to recover, even if recovery might take several years. Anne clearly answered “no” to a direct question if she had become another. Instead, her narration about the brain injury emphasizes how she is happy to return to what she considers to be her previous self, a self that re-emerges through the recovery process:

I remember how proud I was the other day when it came to my mind that now I am going to do something I used to do a lot before—making waffles. So I did that. I came to think of, before the accident I made waffles maybe once a week.

Interviewer: And then you stopped doing it?

It just went away, disappeared.

Interviewer: I see.

This is good. I said it aloud to my husband: “Now I feel that I start returning to the way I was before.” I also talked to a friend of mine who told me about her colleague who had a serious brain hemorrhage. It took 12 years, but then people started telling her: “Now you are back again.” It can take some time.

Anne is not going into reflections about having changed because of the brain damage. What she thinks have made her into another are changes caused by the menopause she is going through at the time of the second interview. She believes these bodily changes to be permanent. In contrast, the consequences of the brain injury are on their way to be disappearing in the recovery process. However, as we will demonstrate, the process of becoming another is strongly felt by most people with injuries we met with.

In the places and social networks where interviewees belonged prior to their injuries, they experienced social tensions in their interactions with others. One woman, affected by multitrauma and using a wheelchair, turned up unexpectedly at her workplace, and one of her best colleagues admitted that she would have stayed away if she had known about the visit. Karin told her story about how she managed such stigmatizing attitudes this way:

Meeting people who know about it . . . they have dreaded to meet me much more than I have dreaded to meet them. They have imagined they would meet a vegetable. After meeting me, they turn out to be glad and touched by realizing that I am the way I am. There is nothing different, I am sitting in the circle of friends like they do. I cannot access and leave as easily as they can, but otherwise it is ok. I manage to eat by myself, with some assistance with the cutlery.

The tensions seem to belong to an initial phase. She soon returns to previous patterns, even if there are new practical tasks to handle.

Monica, in her early twenties and affected by multitrauma, elaborates on her struggles to find out how to balance the disappearance of the life she had and the new conditions in life: the emergence of the other.

I am not able to drink as much as my friends are. I always go to bed early. Before the accident, I was the one full of life, with a rich body language. Even if people say, “You are the good old Monica,” I feel that I am rather. . .. I feel that I have lost so much. (. . .). In the summer, I enjoy wearing sunglasses. They are my protection. I do not have to look people in the eyes when using the wheelchair. I would prefer to have a cloak of invisibility when I am out and about. In a way, this is not my life. Nevertheless, I am so incredibly well taken care of. I have everything accommodated, aids, personal assistants, etc. I know there are many people that have to argue with the local authorities, but I have had none of that (. . .)

Interviewer: You were single when the accident happened; we talked a bit about it last time. Have you any thoughts about that now?

No, I do not dare to look at boys. If I am at a café and use an ordinary chair, I look at boys . . . feeling normal in a way. Nevertheless, at once when I am in the wheelchair, I often lower my eyes. I am not able to raise my head in it. This of course is very silly, because here I will be sitting for the rest of my life; so, I need to get used to it.

She is in a process of dealing with the loss of her previous way of being in the world and coming to terms with the person she has become, as someone who has to find out how to live as wheelchair user and organizer of personal assistants. To people with TBI as their main impairment, in contrast, this process is complicated by the uncertain prognosis of how the impairment level will develop in the coming years.

To some people, reflections on a new identity and new way of living have emerged in a more clarified form than in the case of Monica. In some instances, the injury has even led to changes that are possible to understand as mobilization of resources and valuable ways of living with the consequences of impairment. One example is Allan’s reflections. He was brain injured in a violent attack by strangers.

I was very fond of meat prior to when I was knocked down. But after that happened, I started to think about what an animal experiences, what they feel, the fear. This has turned me into a vegetarian (. . .) At work, after my sick leave, my colleagues have been very considerate, they have turned out to be more friendly. I now see I can gain friendships out of my network there. People are not what you think they are, or I have become more considerate in my relations to others. I also try to take better care of myself. Realizing that I am a worthy human being the way I am.

Allan concluded the interview by pointing out that a window of new possibilities had emerged. This way of thinking is found in some stories. People feel they can take chances in life, start their own company, enjoy outdoor life in new ways, finding relations between family members are improving and putting family first. In these stories about positive value, the otherness does not seem to be existential in the same way as in the troubled stories, such as in Monica’s story when she states that being wheeled is not her life, and not agreeing with her friends that she still is the good old Monica. To herself, she is not. She is another.

Discussion

The findings in this study contribute to strengthening the relevance of several elements found in other studies of contracting and living with conditions such as TBI and multitrauma. The study also introduces some findings that lack attention in previous studies. One element highlighted in previous studies is fatigue. This is a major issue and challenge in the recovery process and displays in close connection with the experience of otherness. The fatigue caused by TBI is characterized as different from ordinary tiredness experienced pre-injury (Aaronson et al., 1999). Fadyl et al. (2017) studied consequences of TBI and found that balancing the need for social connections on the one hand and the need for a peaceful and quiet style of living on the other hand is a decisive coping strategy. The invisibility of TBI means that fatigue is one of the prominent symptoms that makes the impairment manifest in social interaction (Poku et al., 2020). Fatigue is not unique to trauma patients, but rather an experience shared by others, such as individuals with degenerative neurological disorders (Loy et al., 2017). When the social surroundings demand normal levels of stamina and memory, the disability experience is manifest.

The importance of family relations is highlighted in the extensive literature review on consequences of TBI by Levack et al. (2010), and is emphasized in the citation, “Now my wife is married to another man” (p. 996). A large body of research on TBI documents higher levels of psychological distress among family members and documents disrupted family functions (Anderson et al., 2013). Nuances are brought to these issues by the current study, which shows the spouses negotiating about balancing children’s needs and personal needs for facilitating recovery. A literature review that examines the impact of spinal cord injuries on family members who become primary caregivers found that the caregiver role precipitates significant negative consequences, including physical pain, depression, anxiety, and sorrow (Lynch and Cahalan, 2017). Both family members in general and spouses or partners often take a caregiving role. The role change from spouse to caregiver can challenge the whole family and their well-being. Asymmetrical dependency within the relationship could cause the caregiver or care recipient, or both, to lose their identities and freedom. In our findings, we saw this asymmetrical dependency demonstrated. For one couple, the relation as well-established spouses was threatened by the need for a care assistant. For a young man, the identity as an attractive partner was altered by long-lasting fatigue.

Imagining the body as attractive to the partner also makes visible the social stereotyping that takes place in relations in public. This stereotyping was expressed by Monica and Peter, both of whom struggled with the image of themselves as candidates for intimate relationships, because of their being a wheelchair user or fatigue ridden, respectively. The discriminating and stigmatizing attitudes experienced by disabled people are outlined in several studies framed by the social model of disability (Hutchinson et al., 2018; Mik-Meyer, 2016). Common to these studies is their findings of discrimination people with disabilities encounter in public and in the workplace. In the present study, such experiences are also reported. However, what is striking is the way discriminating attitudes towards people with fatigue or people unable to walk are internalized in the subjects themselves. They make decisions in their lives according to ideas about possible discrimination or the possibility of being ignored. In previous studies, this trend has been identified as disabled people becoming strangers to themselves (Corker and Shakespeare, 1999).

There are some aspects in the present study that are scarcely covered in previous studies. Rosenberg et al. (2020) conclude that accident-injured people highly engaged in their recovery demonstrate ownership of their injury, but the authors do not go into more detail on this issue. We believe our study provides an in-depth insight into the importance of gaining control over how the accident is narrated. First, there is a possibility for the accident injured to improve the understanding of what happened in this life-changing moment. This improved understanding can give existential relief and be supportive to the recovery process. The second reason is the importance of establishing a narrative that represents a low level of risk taking. Injured people find themselves in a form of oppression where they by others are interpreted as taking great risks and being careless in road traffic. It becomes important for them to retell the story about the accident as a moral narrative (Bury, 2001). This retelling is part of a struggle against views of them as accident-injured because of careless behavior. Through the meaning-of-the-accident narrative it turns out that the issue of trauma prevention is important for the social reintegration process.

Another aspect that is insufficiently covered in previous studies is the carnal dimension of social reintegration. In our study, the narratives about the paralyzed bodies defined handling body waste as the main challenge. The TBI survivors depict the fatigue experience as an overarching theme in their narratives. We believe these findings point to the importance of the first stage of the biographical disruption: Coming to terms with the personal experience of the altered body (Bury, 1982). Tobin Siebers sums up the need for a realism of the body in social studies of disability by initially stating that he is not claiming that the body is more real than things of culture, and continues:

I am claiming that the body has its own forces and that we need to recognize them if we are to get a less one-sided picture of how bodies and their representations affect each other for good and for bad. The body is, first and foremost, a biological agent teeming with vital and often chaotic forces (Siebers, 2006: 180).

In line with this perspective, Hammell (2015) argues that even rehabilitation professionals tend to focus more on the consequences of the later stages of biographical disruption and less on the significance of the impairment, even though strategies such as activity pacing and adjusted return to social participation are recommended approaches. What the narratives in our study do is to bring to the fore the impairment experience as socially situated, whereby the altered body is mediated through its social embeddedness (Abonie et al., 2020).

The later stages of biographical disruption, such as rethinking the biography and mobilizing resources, can be depicted with concepts such as quest narratives (Frank, 2013), enhancement in living (Hammell, 2015), and ultrabilitation (Buetow et al., 2019). These scholars all point to valuable ways of living with impairment. Also, Harvey (2018) suggests affirmation frameworks as important to the analysis of the disability experience after acquired brain injury. However, only very few contributions have managed to capture how the affirmative approaches can be a component when life post-injury develops. As outlined, injured people we met with only touched upon such elements in their storytelling. This reluctance to engage positively in a new role as disabled may partly be explained by the time horizon. In the first years after their injuries, injured people are preoccupied with finding their personal way of living with an altered body. Such issues do not fit well with key themes in disability awareness such as a unifying identity, fighting oppression, and lack of access. Also adding to the mix is a widespread tendency among all people eligible for disability benefits to reject identifying with the concept of disability (Grue, 2016). It is important to note that there are elements of discrimination and prejudice in the narratives, but these are formulated on a level of personal social relations. How others may react is contemplated on, unwanted reactions take place, and there are examples of unwelcoming workplaces. Still, the strongest elements of the storytelling are recovery, learning to live with the altered body and biographical reconstruction.

Conclusion

The present study has contributed to improve in-depth understanding of recovery and social reintegration in two ways. First, it has expanded on the need to consider the social effects of fatigue and how family relations are affected by accident injuries. Second, it has expanded on two aspects not so well covered by previous studies. The first aspect concerns how negotiating the accident gains meaning in the rehabilitation process. The second aspect concerns the importance of the carnal dimension for living with impairment. In line with relational approaches to disability, further studies should pay attention to the danger of silencing the unruly body in disability discourse. They should also consider including the accident narrative and reflections on risk taking as possible important parts of the rehabilitation processes. Common to both these areas of study is their social embeddedness. Coming to terms with both the accident and the carnal aspects of impairment seems to be suppressed by social forces of stigmatization.

Footnotes

Acknowledgements

The authors thank the subjects for their time and participation. We also thank the researchers and user participants involved in the project Transitions in Rehabilitation, Oslo Metropolitan University, for valuable feedback on drafts of this article.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by The Research Council of Norway (Grant No. 229082).

ORCID iD

Per Koren Solvang

Author biographies

Per Koren Solvang is a sociologist and professor in the Department of Physiotherapy at Oslo Metropolitan University. His research focuses on models for understanding disability and the organization of rehabilitation as professional practice, teaching, and policy development. Solvang also has a long-standing interest in applying affirmative models in analyzing disability experiences.

Ida Heiaas is a sociologist and former PhD candidate in health sciences in the Department of Physiotherapy at Oslo Metropolitan University. She is presently advisor it the Department for Research and Development, Norwegian Women’s Public Health Association.

Grace Romsland is a senior researcher and former head nurse at Sunnaas Rehabilitation Hospital. She holds a PhD in medical anthropology. Her research interests include coping strategies among traumatic brain injury survivors and user involvement in research.

Helene Lundgaard Søberg is a professor in the Department of Physiotherapy at Oslo Metropolitan University. She is also a physiotherapist and senior researcher in the Department of Physical Medicine & Rehabilitation at Oslo University Hospital. Her research focuses on functioning and quality of life in patients and their families after traumatic brain injury.

References

Aaronson

Teel

Cassmeyer

, et al. (1999) Defining and measuring fatigue. Image: The Journal of Nursing Scholarship 31(1): 45–50.

Abonie

Edwards

Hettinga

(2020) Optimising activity pacing to promote a physically active lifestyle in medical settings: A narrative review informed by clinical and sports pacing research. Journal of Sports Sciences 38(5): 590–596.

Anderson

Simpson

Morey

(2013) The impact of neurobehavioral impairment on family functioning and the psychological well-being of male versus female caregivers of relatives with severe traumatic brain injury: Multigroup analysis. The Journal of Head Trauma Rehabilitation 28(6): 453–463.

Bach

David

(2006) Self-awareness after acquired and traumatic brain injury. Neuropsychological Rehabilitation 16(4): 397–414.

Braaf

Ameratunga

Ponsford

, et al. (2020) Traumatic injury survivors’ perceptions of their future: A longitudinal qualitative study. Disability and Rehabilitation 42(19): 2707–2717.

Braun

Clarke

(2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3(2): 77–101.

Buetow

Martínez-Martín

McCormack

(2019) Ultrabilitation: Beyond recovery-oriented rehabilitation. Disability and Rehabilitation 41(6): 740–745.

Bury

(1982) Chronic illness as biographical disruption. Sociology of Health & Illness 4(2): 167–182.

Bury

(2001) Illness narratives: Fact or fiction? Sociology of Health & Illness 23(3): 263–285.

10.

Corker

Shakespeare

(1999) Reclaiming discourse in disability studies. In: Corker

French

(eds.) Disability Discourse. Buckingham: Open University Press.

11.

Douglas

Drummond

Knox

, et al. (2015) Rethinking social-relational perspectives in rehabilitation: Traumatic brain injury as a case study. In: McPherson

Gibson

Leplège

(eds.) Rethinking Rehabilitation: Theory and Practice. Boca Raton: CRC Press, pp.163–190.

12.

Fadyl

Theadom

Channon

, et al. (2017) Recovery and adaptation after traumatic brain injury in New Zealand: Longitudinal qualitative findings over the first two years. Neuropsychological Rehabilitation 29(7): 1095–1112.

13.

Frank

(2013) The Wounded Storyteller: Body, Illness, and Ethics. Chicago, IL: University of Chicago Press.

14.

Grue

(2016) The social meaning of disability: A reflection on categorisation, stigma and identity. Sociology of Health & Illness 38(6): 957–964.

15.

Hammell

(2006) Perspectives on Disability and Rehabilitation: Contesting Assumptions; Challenging Practice. London: Churchill Livingstone.

16.

Hammell

(2015) Rethinking rehabilitation’s assumptions: Challenging “Thinking-as-usual” and envisioning a relevant future. In: McPherson

Gibson

Leplège

(eds.) Rethinking Rehabilitation: Theory and practice. Boca Raton: CRC Press.

17.

Hartog

Scherer-Rath

Kruizinga

, et al. (2020) Narrative meaning making and integration: Toward a better understanding of the way falling ill influences quality of life. Journal of Health Psychology 25(6): 738–754.

18.

Harvey

(2018) Theorising everyday life after acquired brain injury. Disability & Society 33(1): 78–93.

19.

Hutchinson

Roberts

Daly

(2018) Identity, impairment and disablement: Exploring the social processes impacting identity change in adults living with acquired neurological impairments. Disability & Society 33(2): 175–196.

20.

Kleinman

(1988) The Illness Narratives: Suffering, Healing and the Human Condition. New York, NY: Basic Books.

21.

Kralik

Visentin

Van Loon

(2006) Transition: A literature review. Journal of Advanced Nursing 55(3): 320–329.

22.

Levack

Kayes

Fadyl

(2010) Experience of recovery and outcome following traumatic brain injury: A metasynthesis of qualitative research. Disability and Rehabilitation 32(12): 986–999.

23.

Locock

Ziebland

Dumelow

(2009) Biographical disruption, abruption and repair in the context of motor neurone disease. Sociology of Health & Illness 31(7): 1043–1058.

24.

Loy

Taylor

Fling

, et al. (2017) Relationship between perceived fatigue and performance fatigability in people with multiple sclerosis: A systematic review and meta-analysis. Journal of Psychosomatic Research 100: 1–7.

25.

Lynch

Cahalan

(2017) The impact of spinal cord injury on the quality of life of primary family caregivers: A literature review. Spinal Cord 55(11): 964–978.

26.

Malabou

(2012) Ontology of the Accident: An Essay on Destructive Plasticity. Cambridge: Polity Press

27.

Mik-Meyer

(2016) Othering, ableism and disability: A discursive analysis of co-workers’ construction of colleagues with visible impairments. Human Relations 69(6): 1341–1363.

28.

Poku

Caress

A-L

Kirk

(2020) “Body as a Machine”: How adolescents with sickle cell disease construct their fatigue experiences. Qualitative Health Research 30(9): 1431–1444.

29.

Riessman

(2008) Narrative Methods for the Human Sciences. Los Angeles, CA: Sage.

30.

Romsland

Milosavljevic

Andreassen

(2019) Facilitating non-tokenistic user involvement in research. Research Involvement Engagement 5(1): 18.

31.

Rosenberg

Zion

Shearer

, et al. (2020) What constitutes a ‘successful’ recovery? Patient perceptions of the recovery process after a traumatic injury. Trauma Surgery & Acute Care Open 5(1): e000427.

32.

Sherry

(2016) A sociology of impairment. Disability & Society 31(6): 729–744.

33.

Siebers

(2006) Disability in theory: From social contructionism to the new realism of the body. In: Davis

(ed.) The Disability Studies Reader. New York, NY: Routledge.

34.

Soberg

Bautz-Holter

Roise

, et al. (2007) Long-term multidimensional functional consequences of severe multiple injuries two years after trauma: A prospective longitudinal cohort study. Journal of Trauma and Acute Care Surgery 62(2): 461–470.

35.

Soberg

Roise

Bautz-Holter

, et al. (2011) Returning to work after severe multiple injuries: Multidimensional functioning and the trajectory from injury to work at 5 years. Journal of Trauma and Acute Care Surgery 71(2): 425–434.

36.

Solomon

Nixon

Bond

, et al. (2019) Two approaches to longitudinal qualitative analyses in rehabilitation and disability research. Disability and Rehabilitation 42(24): 1–7.

37.

Villa

Causer

Riley

(2020) Experiences that challenge self-identity following traumatic brain injury: A meta-synthesis of qualitative research. Disability and Rehabilitation. Epub ahead of print 28 March 2020. DOI: 10.1080/09638288.2020.1743773.