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ISSN: 2376-0389
Journal of Multiple Sclerosis
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Multiple Sclerosis and Work: An Interpretative Phenomenological Analysis of the Perspective of Persons with Early Stage MS

Archie de Ceuninck van Capelle1*, Leo H Visser2 and Frans Vosman3

1University of Humanistic Studies Utrecht, The Netherlands

2Care Ethics and Multiple Sclerosis, University of Humanistic Studies, Utrecht, The Netherlands

3Care Ethics at Tilburg University, The Netherlands

*Corresponding Author:
Archibald de Ceuninck van Capelle
University of Humanistic Studies, Kromme Nieuwegracht 29
3512 HD Utrecht, The Netherlands
Tel: 310639442678
E-mail: [email protected] phd.uvh.nl

Received date: September 30, 2015; Accepted date: October 24, 2015; Published date: October 31, 2015

Citation: de Ceuninck A, Visser LH, Vosman F (2015) Multiple Sclerosis and Work: An Interpretative Phenomenological Analysis of the Perspective of Persons with Early Stage MS. J Mult Scler (Foster City) 2:158. doi:10.4172/2376-0389.1000158

Copyright: © 2015 de Ceuninck A, et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

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Abstract

Objective:This study explores the lived experience in their working lives of people with early stage multiple sclerosis (MS).

Method: Ten people at various stages in their careers (applying, employed, recently retired) who had been diagnosed with early stage MS were interviewed in open, in depth interviews. Transcriptions were analysed following a phenomenological approach.

Results: Six themes were found: the tiresome process of adjustment, inventing ways to do your work, feeling hurt about how others see your illness avoiding applying for jobs, embracing retirement, and mourning over lost work. Instead of relating these findings to mainstream theories that presuppose rather than investigate subjectivity (coping, selfmanagement, skills), we generalize these findings by relating them to the psychodynamic model of work of Christophe Dejours. This model is a clinical theory that offers an account of the relations between subjectivity, work, and action.

Conclusion: Current models of management and vocational rehabilitation maintain individual/group and body/mind dichotomies that don’t exist in the lived experience of work and rehabilitation of people with MS. It is recommended that professionals offering supervision or vocational services to employees with early stage MS or other chronic conditions relativize these models while offering professional help, and that they revitalize the art of listening as an act of inclusion and acknowledgement.

Keywords

Qualitative research; Perception; Relapsing-remitting multiple sclerosis; Work; Employment

Introduction

A diagnosis of multiple sclerosis (MS), a chronic, incurable and sometimes progressive neurological illness is usually an enormous shock for the person affected and for their intimate social circle [1]. In time, the event might have far reaching consequences for their career and for their personal and public life. The medical, psychological, and social aspects of chronic illnesses have been studied widely, but scientific accounts of chronic illness written from the first person perspective remain rare [2,3]. Most research in current medical and social sciences aims at the finding of quantifiable results, cause-effect relations, parameters and theories that predict the future. Within this type of studies, the subjectivity of the participant is exactly the phenomenon that needs to be ruled out. This state of affairs in the current practice of medical research however, doesn’t rule out the possibility that the topic of subjectivity is not an important issue for the delivery of good care and hence of scientific exploration. We suggest that the growing interest in the last decades in comprehensive care and the patient perspective, rather indicates the opposite [4,5]. Therefore, though we acknowledge the value of established methodologies, we think that the first person perspective is a legitimate theme for scientific exploration and an appropriate object for the application of qualitative methods, which are indeed less common in medical sciences than their quantitative counterparts.

In the first person perspective, the patient diagnosed with the disease and involved in conversations about it describes what is happening to them and what is at stake following a diagnosis of MS. This is distinguished from the third person “helicopter” view of behavioural sciences such as psychology Audulv’s ‘map’ of recent qualitative research related to neurological illnesses and the systematic review of Sweetland on vocational rehabilitation for people with MS show that only a small part of recent studies on chronic neurological conditions is devoted to the exploration of the perspective of the person with the illness. Most research reflects other perspectives such as those of carers and of close relatives. In this paper we investigate how people with early stage MS experience their disease within their working lives [6-8].

MS impacts heavily on job retention. The participation in the labour market of people with MS is approximately half of that of the Dutch population in general and data for the United States show a similar situation [9,10]. A few studies have explored the first person accounts of employed or recently unemployed persons with MS, for example Dyck who studied the patient’s perspective by investigating the lives of two women with MS who had become recently unemployed. She focussed on the complex intersection of body, place, space, gender and norms in their experience of home and neighbourhood, and defined their world as one of shrinking places and silent spaces. Johnson et al. [11,12] took a more generic approach to the patient’s perspective by investigating the costs and the benefits of employment people with MS who were employed. Four themes emerged: the cost-benefit economy of working, fatigue and cognitive changes, stress in the workplace, and accommodations made to address barriers. Sweetland et al. [1,2,4,13] adopted a thematic approach by exploring in focus groups what people with MS require from a vocational rehabilitation service in terms of content and service delivery. They found two key issues: managing performance and managing expectations [1,2].

With our study we advance current research on MS and work, first by adopting the thematic focus of Sweet land and Johnson but with a different approach [12,13]. In their studies themes are arrived at by means of research questions about the needs, the costs and the benefits of employment. Even if the patients see these topics as relevant, they do not necessarily come close to capturing the full meaning of work for the MS patient. Therefore our approach is more open and does not initially demarcate specific points of interest. Rather, we aim to explore how the patients themselves prioritise issues. In this way we hope to find themes that are more representative of the perspective of people with MS and less the view of others such as policy makers and behavioural scientists. Secondly, our study adds to current research by adopting the lived experience approach of Dyck albeit with a different accent. Traditional investigations of lived experience use a more or less canonical ‘grid’ of elements that is used to investigate the collected data [11,14]. In Dyck’s study, the principal element investigated is space, while in older literature on the lived experience and MS, the body is an important element [15]. Similarly, our approach does not initially demarcate particular elements of the lived experience but rather aims at exploring how participants themselves prioritise these elements. By approaching the themes and the lived experience in this way, we approach phenomenology as an emancipatory methodology that aims to voice the experiences that matter most for people with illness. With this study we hope to gain deeper insight into how men and women with early stage MS experience and interpret their working life and career. This objective is concerned, in line with the qualitative design, with meaning and doesn’t aim at, as is common in most medical studies, the testing of a hypothesis [16-18]. However, as general assumption that undergirds this study, we hypothesize that colleagues, management, staff and social and health services view work differently than employees with MS, whose subjective, lived experience emerges from a complex set of social relations and everyday concerns, occurrences and situations.

Design

Our study began in 2012. We used purposeful sampling to include people with a definitive relapsing remitting MS diagnosis who had received their diagnosis a maximum of two years previously [19]. Purposeful sampling differs from random probability sampling, the most current sampling method in medical and social sciences. Purposeful sampling is a form of nonprobabilistic sampling. It aims at the selection of information rich cases and the transferability of insight to other context, instead of statistical generalizability. In qualitative studies, nonprobabilistic sampling is common [20,21]. Recruitment was carried out by approaching patients from the records of a hospital’s ambulatory MS care unit until we reached 10 participants. This number was in line with our aim of carrying out an explorative study and congruent with the demands of the chosen qualitative approach [22]. The validity, meaningfulness, and insights generated from qualitative enquiry have more to do with the information richness of the sample and the analytical capabilities of the researchers than with sample size [21]. Yet, in qualitative studies in health care research, theoretical saturation, the point at which “no additional data are being found whereby the (researcher) can develop properties of the category”, has become the gold standard by which purposive sample sizes are determined [18,20,23,24]. For phenomenological studies, samples consisting of a number of interviews in a range between 5 and 25 or 6 and 10 are expected to lead to saturation. Guest et al. found in their dataset of sixty in-depth interviews with women in two West African countries that saturation occurred within the first twelve interviews, although basic elements for meta-themes were present as early as six interviews. [20,25,26]

Data Collection and Participants

Three interviewers, the first and the third author and a resident neurologist1, conducted conversational interviews in the homes of the participants. The interviews were conducted in Dutch, the native language of the participants and of the interviewers and the researchers. Following our open, explorative approach, we encouraged the participants to talk about what mattered most to them. The interviewers made use of a concise topic list that included work, personal situation, diagnosis and care. The participants were encouraged to prioritize topics, add them and discard them. The ethical committee of the St. Elisabeth Hospital in Tilburg approved the research and the patients gave informed consent for participation.

Data were gathered from 13 People; 10 people with MS and three partners that were asked by the person with MS to assist them with the interview. We granted this request, as is common in qualitative research on illness [27]. All participants resided in the Netherlands and the patients and the participating partners were Caucasian. The people with MS were aged 27-51 years. Two participants lived alone; eight lived with a spouse or a partner. Severity of symptoms, type of job and employment status varied. One was studying and applying for work, one had considered applying for a job but was actually retired, one was employed but on sick leave, one was employed but only working half of her contractual hours, two were employed without adjustments and three were retired. From the five employed participants, two received treatment with disease-modifying therapies. The remaining five participants who received treatment where unemployed at the time of the interview. Working experience varied from none at all up to several decades. (Table 1) shows the profile of the participants. The table is arranged in ascending order of the participants’ ages.

Participant Pseudonym Interviewer Gender Age Partner? Career Stage profession
6 Kathy 1st author F 27 yes Studying, applying musician
3 Lucilia DF F 30 no retired, considering applying media designer
9 Shayne 1st author F 31 yes employed, on sick leave cleaner
1 Livia 1st author F 33 yes employed, reduced hours office worker
5 Lawrence 1st author M 35 yes, Rosie1 retired shoemaker
10 Renata 1st author F 41 yes employed teacher
8 Savina 2nd author F 43 yes employed secretary
7 Andrea 2nd author F 45 yes employed librarian
2 Ricky DF M 46 Yes, Chandra2 retired cleaner
4 Katherine DF F 51 Yes, Miljard3 retired kitchen employee

Table 1: Profile of the participants.

Data Analysis

The analysis was guided by Interpretative Phenomenological Analysis (IPA), a qualitative approach [22]. Data analysis consisted of three stages of inductive analysis of the digital audio files. In the first stage, shortly after each interview, the authors and a postdoc researcher2 added, independently from each other, preparatory notes in Dutch in the right margins of the transcriptions. Within these notes, each researcher recorded free associations, pieces of theory, questions and possible related topics against specific excerpts of the transcription. Subsequently the transcriptions and notes were discussed in a plenary meeting. The cycle of interviewing, noting and discussing was repeated after each interview until the entire sample of 10 interviews was completed. In early 2013, a general meeting of the three authors at which emergent threads were identified concluded the first stage.

In 2013 and 2014 the first author entered the second stage by reworking the results of the first stage into a network of in vivo coded codes, supported by data analysis software Atlas. ti version 6.2, using a constant comparison method.

In the third stage that started in the autumn of 2014, guided by the network of codes and the methodological insights of IPA, the first author constructed six themes on career. Given the heterogeneity of career phases the participants appeared to be involved in, we analysed the (from our phenomenological point of view) essential excerpts of the transcripts according to career stage as well as according to thematic kinship. This arrangement enabled us to include in the analysis, in a clear way, the divergent situational contexts of the participants while simultaneously allowing us to capture the significant nuances in similar themes across different career stages. The first author made a preliminary translation of the essential quotes falling under each theme. This translation was afterwards discussed and refined with the help of a professional translator [28].

Findings

Six themes were identified in the analysis: the tiresome process of adjustment, inventing ways to do your work, feeling hurt about how others see your illness, avoiding applying for jobs, embracing retirement and mourning over lost work. (Table 2) Each of these themes is described with quotes that illustrate the themes [1-6]. Themes identified through analysis of interviews with 10 participants with early stage MS, ordered according to career stage and theme.

The tiresome process of adjustment: The onset of MS meant for the participants the start of a period of making adjustments in the domain of work and income. Kathy had just finished her music exams with excellent grades then she fell ill and also ‘fell’ into a social benefit. From there she received coaching from the social services to get a job at places she felt very uneasy with. Kathy commented:

“Well, they do a lot to get you a job, but the places where they put you don’t really make you happy.” {6:84} “At the end, when I was at the point of escaping from benefits, the woman, a job coach, said to me: ‘I really hope you find something else, because this doesn’t fit you at all’. That workplace was a factory.” {6:85}3

Shayne, a cleaner, already had a longstanding relationship with her employer when she fell ill. As with Kathy the course of adjustment was not smooth. A first attempt to adjust failed:

“About the UWV4, I have not a single good word to say. If you need something, I don’t care what, it’s a worthless institute. (…) The UWV closed [at one point] my case and left my boss – I have known my boss for a long time, he knows my situation – to cope alone with all the legal stuff, rehabilitation, sick leave, etc. [He was unable to manage all of this] so I just continued my cleaning work.” {9:91}

After some months however, Shayne had an intensive meeting with the doctor in which she realized that she had ignored her illness for too long:

“At that moment I chose for myself. So I said, ‘sorry boss, this doesn’t work for me anymore. It’s me first now, because otherwise I just can’t carry on.’” {9:94}

Andrea, a librarian, also told her manager that she couldn’t carry on as she had done. Changing her working circumstances appeared, however, to be a demoralising affair:

“After a lot of hassle I managed to get a dispensation from that work [that entailed standing] for one hour at noon while I did sedentary work instead. This was an adaptation that was added to my contract and to my personnel file…. I managed to get agreement for this arrangement with the support of my occupational physician (…). In the recent past I had been awarded a bonus a couple of times: ‘You are a good employee and we are happy with you’, but when a thing like this happens to you, you fall ill, nobody can do anything about it, and they are unresponsive. That frustrates me enormously. {7:97}.

Katherine, working as a dishwasher in the kitchen of a care institution, also had a troubled relationship with her line manager in trying to get her work adapted to suit her new circumstances:

“They don’t understand me, or they don’t want to understand me, or they don’t understand MS. And that relationship didn’t go very well. (…)’ And after only six months, he said, ‘When things are not going well with you, your diplomas fit your for nothing other than functioning as domestic help.’ And I said: ‘That’s not for me, I’m not able to do that.’” {4:21}

Inventing ways to do your work: Livia, Andrea and Savina were working at the time of the interview. Livia, an office worker at a major manufacturing company, and Savina, a secretary in the local town hall, told how they dealt with MS on an average working day:

Theme Career stage at the time of the interview
Pre-Career Mid-Career Post-Career
The tiresome process of adjustment Kathy Shayne, Andrea Katherine, Lawrence
Inventing ways to do your work   Livia, Savina  
Feeling hurt about how others see your illness Lucilia, Kathy Andrea Lawrence
Avoiding job application Lucilia Andrea  
Embracing retirement     Lawrence
Mourning over lost work     Katherine, Ricky

Table 2: Themes identi?ed through analysis of interviews with 10 participants with early stage MS, ordered according to career stage and theme.

Livia: “I have a contract [to work] 40 hours, but actually I manage only 20 hours, so I do the same work in half the time. (…) I found a way to [organise my] work. When people have a question for me – questions by email are the easiest to handle – and I don’t see any urgency, I don’t respond, unless they get back to me [another time and I know] that it is important for them. This economises [on my work] quite a lot [laughter]. So this is how I can do my [40 hour] job in 20 hours. {1:58}.

But besides her own ‘tricks’, Livia found that the help of others was very important too for holding on to her job:

“You notice the small things. Somebody at the office came to me and said: ‘I asked you to draft that article, but, you know, I will just do it myself ’. [Or] when I was assigned to a meeting, [I liked the fact that someone said to me], ‘you know, I’ll take that.’” {1:58}

For Savina, personal perseverance was needed to get up and go out to work in spite of her illness:

“Sometimes I wake up and think: ‘I’m so tired’, but then I boost myself up, and I manage to do it.” {8:133}

Feeling hurt about how others see your illness: Four participants said how they felt hurt about the way in which others saw their illness. Lucilia, a media designer and photographer, dreamed of starting her own business. After her graduation, however, she was assigned to a rehabilitation project because her complaint prevented her from entering the labour market.

“But they kicked me out [of the project], I was really devastated. [They said:] … ‘Well, you’re sick. So you can’t …. Goodbye!’ They really made a mistake.” {3:182} “It was a really bad blow [for me]” {3:273}

For Kathy a blow came quite unexpectedly from a friend and colleague after a failed application at a renowned orchestra. Kathy told how her friend commented on the outcome of her application:

“’You know, Kathy, perhaps it’s just better that things have turned out like this, because if you had been hired, you would not have persevered because you have MS. One doesn’t even stand a chance with the medical tests with asthma, let alone in your position!’ Well, then I was really angry! Usually I never tell people my opinions directly, but on this occasion I told her the truth. I felt really embarrassed.” {6:60}

Andrea related how she felt awkward and sad when she heard how a colleague had commented on her illness:

“At the outset a colleague said to me: ‘When I see you, I only see MS.’ I replied: ‘I really regret that. Of course, it belongs to me and it will never leave me. But I hope I’m more than that.’” {7:85}

For Lawrence, who used to be an orthopaedic shoemaker, he was alienated by the attitude towards his illness of someone at the UWV office:

“I received an invitation from the UWV to get a work capacity interview. They immediately asked me for my plans. I replied: ‘Something secretarial’. And then they said: ‘Grab that pen and strike that particular entry field. You will never be able to work again.’ That was a strange idea to me because I had never experienced such a weird thing before, that someone would say to me: ‘you will never resume work again.’ And they also asked me: ‘Who do you expect to hire you?’” {5:32}

Avoiding applying for jobs: Two participants told how they felt MS inhibited them from entering the labour market (Lucilia) or to make a career move (Andrea).

Lucilia:

“I was very glad when the people from the UWV said to me: ‘So you want your own business? Well, try it!’” But recently I had to take a step backwards. “{3:197} “I am stressed, not able to function properly, and very much affected by disabling fatigue. (…) very annoying. So I decided to apply for a job first and try [to start my own business] again in two years?” {3:189}.

But at the time of the interview, Lucilia was still not applying for jobs:

“Yes, but making that step … setting up challenges I probably can’t meet…what if I’m at the office and I’m hit by disabling fatigue? These are all new things I will have to address, so I am thinking of myself a bit: may I not have some extra time staying at home?” {3:264}

Similarly, Andrea said:

“At one particular moment there was a teaching vacancy at the ROC5, and I fancied applying, but I didn’t dare , because of my MS. I was supposed to study and to teach, new things. Yes, I think, it [MS] inhibits me from taking such a step.” {7:100}. “And family life is pretty busy here, so I don’t think making such a move is a good idea.” {7:102}

Embracing Retirement: Lawrence and his wife Rosie told how they had reflected on the costs and benefits of being employed and how they had decided to apply for a social benefit:

“And yes, on one hand I had some motivation to work. But on the other, considering the economic situation and the response [of employers] when I applied [during my reintegration trajectory], I thought: ‘well, let’s strike that entry field because then, in any case, I’ll know what I’m doing’”. {5:47}

Mourning over lost work: For Katherine and Ricky, the onset of MS meant the end of several decades of working as a breadwinner. They therefore missed their work a lot.

Katherine:

“After the rehabilitation centre’s assessment, having consulted the occupational physician and the psychologist, I decided to make early application for a full WIA6 benefit, because, given the findings of the assessment, there would not be work for me anyway: not being able to work in a team, not being able to listen to music, having a maximum concentration span of half an hour, the sum of all that … So the occupational physician said: ‘Lets apply.’ And that guy from Human Resources said: ‘Well, okay, we will fix the paperwork.’ And off he went. (..) After 15 years of loyal service. My work meant everything for me.” {4:35}

Ricky’s wife Chandra related: “They checked [his abilities to work], his eyes, but he can’t see very well, he can’t concentrate, and he can’t deal with busy places, so many things. Finding a job [while having so many limitations] is actually impossible.” {2:28}

Ricky added:

“It was really difficult for me to cope with that. Let’s see, I’m 46 now, I started to work when I was 12 years old, and worked right up until that day, and then – nothing. Every day I went to work at seven in the morning, was busy until, say, eight or nine at night. And now – nothing. That’s tough, isn’t it?” {2:34}

Discussion

To answer the research question about how people live with early stage MS, we interviewed 10 patients, diagnosed no more than two years prior to the interview. In our sample we found that early MS wasn’t associated with one specific career stage but affected people at the beginning of their career, in its midst, or else truncated their career with early retirement. Participant’s at all three career stages had experienced hurtful situations in relation to how others understood their illness and interpreted their return to work, either supervised by the UWV or by their employer, as a tiresome process. Participants in pre- as well as mid-career stages worried about the consequences of their illness for their career in the future. Evaluating the course of their already-terminated careers, one participant saw the stability associated with living on incapacity for work benefits as an advantage , while for two others, missing their work was the dominant perspective.

What should be the aim of qualitative analysis of the first person perspective? Qualitative research on the first person perspective is meant to excavate the themes, patterns, understandings and insights that characterise this perspective. In IPA this excavation takes the form of the investigation of lived experiences, including their particularities and the specific contexts in which they occur. Like other methods, IPA aims at establishing generalisations but, according to Smith et al., it “prescribes a different way of establishing those generalisations. It locates them in the particular and hence develops them more cautiously [22,29]”. However, despite this exhortation to proceed slowly and with caution, recently Murray and Holmes argued that most applications of IPA actually offer straight forward descriptions of lived experiences, without “taking account of subject formation and of the context within which the subject might appear as the bearer of an ethical claim”. Within the small body of qualitative research pertaining to illness and work, a similar point is made by Tiedtke et al. [30] and also Van Hal et al. [31] on behaviourism in models of return to work, and the emphasis on skills in vocational interventions for the unemployed [32-36]. They maintain, each in their own way, that much research focusses on self-management, coping, needs and skills and generally overlooks the subject that makes skills, processes and behaviours actually ‘happen’[12,13,37-41]. This subject however is much more unstable, much more subject to doubt, affection, and interpretation than is generally accounted for. We agree with this position and hold that qualitative analysis of the first person perspective should focus more on the process of subject formation itself.

Understanding MS and work as central for subjectivity. The psychodynamic model of Dejours: Aligning with a concern for subjectivity, we think that Dejours’ psychodynamic model of work, a clinical approach that focusses on the dynamic relationship between subjectivity, work, and action, offers a reliable route to generalising the findings of our data without losing sight of the theme of subject formation [42]. Building on the works of psychoanalyst Le Guillant and ergonomist Wisner, in the last decades Dejours has developed a model that identifies four ways in which work is central for the formation of subjectivity [1,43-45].

The centrality of work in relation to the subject’s mental health, the centrality of work in the structure of relationships between men and women, the centrality of work in relation to the community, and the centrality of work in relation to the theory of knowledge. We think two parts of this model (part 1 and 3) apply to the results of our analysis [2-4].

The first aspect of the work – subjectivity relationship consists in uncovering the specific conditions that turn the relationship with work into one of sadness or joy. The influence of work on one’s individual experience plays out on an individual as well as a social level. At the individual level the subject experiences the resistance of the world (including the physical aspect as well its complexity) when she or he tries to accomplish the assigned tasks. Solving the difficulties and accomplishing the tasks leads not only to appropriation of the world but also of the body and of the self. On the social level, Dejours points to the importance of one’s peers recognising one’s achievement as an essential part in the development of identity. Our findings relate to the individual level in this respect that the temporary but frequent waves of fatigue made the participants doubt the extent to which they were actually able, or would be able in the future, to accomplish the assigned tasks. Concerning the social level, one participant (Livia) felt proud that, with the help of her peers, she had managed to adapt her work to the constraints of her illness. The importance of recognition was also felt by other participants, but predominantly in a negative way. It was felt that stigmatising attitudes towards illness blocked colleagues or managers from seeing (and recognising) the actual efforts that were made and what was accomplished (social level). Being deprived of work was seen by two participants (Ricky and Katherine) as a great personal loss, hence confirming the centrality of work for subjectivity.

The second aspect of the work—subjectivity relationship (third element in the model of Dejours) points to the fact that work is not only about getting things done but also about cooperation with others. Work, according to Dejours, is “not only production, it is also learning to live together”. Work requires a minimum of consideration of others and of conviviality. However, with one poignant exception (Livia), the perspective on work as a social activity seems to be remarkably absent in our sample. Dejours says, however, that the social aspect of work (“effective forms of cooperation that should be differentiated from prescribed forms of coordination7”) is obscured and damaged by the currently dominant systemic or functionalist approaches of work organisation. These latter approaches seem to have been experienced in great measure by the participants. Some of them felt their treatment by UWV was depersonalised, they were just numbers to UWV; others lamented the bureaucratic or formalistic angles taken by their employers. Generally (with exception of Livia), the participants felt that their situation was more viewed as an individual and functionalistic problem than as an issue of cooperation and conviviality.

Implications of this study for vocational professionals: Vocational professionals work for the most part with medical, psychological and organisational models that just presuppose the subject and understand body, self, and world as relatively static, objective and pre-given entities. This study, however, like some previous ones, points to the contrary. Identity, body, and world are dynamic and interrelated [11,46,47].

It is therefore recommended that professionals primarily concerned with the body, for example vocational physicians, relativize the current emphasis on the functionalist aspect of the body. This emphasis even finds expression in Dutch social law as a quantified notion of an individual’s remaining capacity for work. But as inability to perform specific tasks at work emerges, it isn’t just a matter of applying the law or of compensating for loss of income. The emerging situation has a profound effect on identity and relationships with the world. From a phenomenological point of view the importance of remaining connected with the world through physical activity can therefore be seen to be paramount. It should however not be confounded with the functionalist argument that work serves well-being or with the “logic of activation” [48]. Demotion, civic voluntarism and regular daytime activities might be useful instruments for continued activity and are preferable to the lack of activity that often goes alongside living on social benefits.

Likewise, it is recommended that professionals primarily concerned with psychological and motivational issues relativize the current mentalism that runs through popular approaches such as empowerment , by acknowledging the intertwining of mental phenomena with the body and the environment [11,29,49]. Finally, it is recommended that professionals with managerial responsibilities relativize the current exaltation of individual performance and acknowledge the role of cooperation and conviviality in the workplace. Organizational aspects may very well contribute to the alleviation as well as to the aggravation of the effect of MS on work. We suggest here the importance of the “art of listening”, previously identified by Van Hal et al. [31] and Dejours and Garnet [50] as a preferred device or instrument for inclusion and acknowledgement.

Limitations of this study and suggestions for future research: In research on occupational rehabilitation, concepts that presuppose rather than research subjectivity (skills, needs, coping, empowerment, self-management etc.) display an overwhelming presence. Studies that conceptualize subjectivity and identity as dynamic, contextual, and interpretational issues are few and far between, and those that exist seem to focus principally on establishing that subjectivity is currently neglected in the research. Establishing this point is a main concern also for our study too and this is strength as well as a limitation. In order to advance research of the first person perspective – critical (including our own) as well as mainstream approaches- it might be necessary to incite a broader awareness in first person research for the current lack of attention for the formation of the subject, to reorganise the currently scattered (but actually affiliated) research on contextual subjectivity across diverse life domains (health, work, intimate life etc.) into a more unified framework for research on subjectivity and to bridge the divide between ‘mainstream’ and ‘critical’ research by investigating how broadly accepted concepts like “coping” and “empowerment” relate to the subtleties and particularities of subject formation [1-3].

Our study applies a single interview per participant design [26]. The participants however presented their experiences without exception as a process or a succession of events. This finding suggests that for future research on MS and work, a longitudinal design, with multiple interviews conducted over a period of months or even years, is recommendable and could offer more detailed and sustained insights in the (development of the) meaning of work for people with MS. Use of immunomodulation therapy was not an important factor when analysing the lived experience of work in MS patients. There is evidence from quantitative studies that, notwithstanding the complex relations between MS and work, receiving treatment supports job retention and reduces the duration of sick leaves and utilisation of medical care [51-53]. The better medication helps to keep the disease, physical as well cognitive, stabile and helps to improve fatiguethe more likely patients will be able to continue work.

Finally, a necessary progression of this study is to investigate more thoroughly the relationship between subjectivity, work, and action, specifically for MS. Dejours’ psychodynamic model of work offers a generic account and doesn’t address the particular the situation of workers with a disease, let alone of workers with MS. Although we think, as we mentioned above , that Dejours’ model offers a convincing path for the generalization of the findings of our data, this study doesn’t, conversely, answer the question what configuration of subjectivity, work, and action is characteristic for employees with MS. Future, comparative, research on workers with neurological and other diseases is needed to discover the defining characteristics of the ‘fingerprints’ with which MS marks the professional life of persons living with this disease. We expect that MS related episodic disability in combination with fear about the future development of the disease course might be found among the identifying elements. This remains however to be investigated.

Conclusion

Our phenomenological analysis of interviews with 10 people with early stage MS has yielded six themes: the tiresome process of adjustment, inventing ways to do your work, feeling hurt about how others see your illness, avoiding applying for jobs, embracing retirement, and mourning over lost work [1-6]. Unsatisfied with regular conceptual approaches to illness and work that presuppose rather than investigate subjectivity, we turned to the psychodynamic model of work of Dejours to generalize our findings without losing the particularities of contexts in which subjectivity takes form. Two elements of this model, the centrality of work in relation to the subject’s mental health and the centrality of work in relation to the community, emerged as applicable to the generalisation of the results of our analysis. It is recommended that professionals offering leadership or vocational services to people with early MS and other chronic conditions relativize the current functionalist and individualist approaches to work and acknowledge the relevance of conviviality, cooperation, and of the actual intertwining of self, body and world in the work environment.

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/ or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

1See acknowledgements.

2See acknowledgements.

3{transcription:quotation}

4Uitvoeringsinstituut Werknemers Verzekeringen, Dutch Social Insurance Institute

5Regionaal Opleidingscentrum, Regional Education Centre

6Werk en Inkomen naar Arbeidsvermogen, Act on Work and Income According to Work Capacity.

7Our emphasis

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