Understanding and living with multiple sclerosis fatigue

Abstract

Introduction

Fatigue substantially affects the lives of many people with multiple sclerosis. This study aimed to further our understanding of the experience of living with multiple sclerosis fatigue by exploring how people became aware of and understood their multiple sclerosis fatigue and how they accommodate it in their daily lives.

Method

The study used an existential approach to thematic analysis. Thirteen in-depth, semi-structured interviews with people who experienced multiple sclerosis fatigue were conducted and analysed.

Results

Participants developed an understanding of multiple sclerosis fatigue through gaining awareness of its effect on their lives, seeking information themselves and being informed by health professionals. Participants described how they began to understand the effect of fatigue in their lives and make decisions about how to accommodate it. They discussed the challenges associated with helping others to understand their multiple sclerosis fatigue.

Conclusion

Lay and expert explanations, the phenomenological notions of lived experience, self-identity and embodiment and stigma associated with invisible disability were useful concepts for understanding the results. Clinicians should consider these concepts when supporting people with multiple sclerosis fatigue to understand the effect of fatigue in their daily lives and use fatigue management strategies to make effective lifestyle changes to accommodate it.

Keywords

Multiple sclerosis (MS)fatigue lived experience phenomenology health care social stigma

Introduction

This study aimed to explore how individuals experienced multiple sclerosis (MS) fatigue and accommodated for it in their daily lives. The following two research questions guided the study: How did people recognise MS fatigue in their daily lives? How did they accommodate MS fatigue in the context of their daily lives?

Literature review

MS is a chronic progressive disease of the central nervous system (CNS), which affects 2.3 million people worldwide (Multiple Sclerosis International Federation, 2013). Lesions in the CNS cause symptoms that affect areas such as vision, balance, coordination, sensation, pain, speech, cognition and movement (Institute of Medicine, 2001). The age of onset of MS is commonly between 20 and 40 years, with a higher percentage of this population being women (Palmer et al., 2013).

Fatigue is ‘a subjective lack of physical and/or mental energy that is perceived by the individual or caregiver to interfere with usual and desired activities’ (Multiple Sclerosis Council for Clinical Practice Guidelines, 1998: 2). This lack of energy is out of proportion to the degree of effort required. It is the most common symptom of MS (Cahill et al., 2010), affecting 70–90% of people with MS (Finlayson et al., 2013), and is described by many as their most disabling symptom (Amato and Portaccio, 2012; Giovannoni, 2006). Persistent fatigue is associated with greater levels of anxiety and depression and lower levels of physical functioning, and impacts upon performance of tasks such as housework, visiting friends, moving around and shopping (Lerdal et al., 2007). It can also significantly affect individuals’ participation in tasks that require continuous cognitive input (Krupp and Elkins, 2000).

Descriptions of fatigue by people with MS reported in research have included: ‘time consuming and all-absorbing’ (Flensner et al., 2003: 711); a ‘novel sensation’ (it differs from common fatigue), ‘sleepiness’ and ‘running out of batteries’ (Moriya and Kutsumi, 2010: 423); and an ‘unusual feeling in their eyes, which involve[s] a flickering and swimming sensation’ and an ‘enormous pounding in the eyes that [leads] to a terrible dizziness’ (Olsson et al., 2005: 11). Research has also captured people with MS’s descriptions of how it impacts upon their daily lives. Fatigue can promote feelings of social isolation through, for example, being unable to participate in the surrounding world and feeling like an outsider (Olsson et al., 2005), and can contribute to loss of interests, with a consequent loss of friendships (Cahill et al., 2010). Moriya and Kutsumi (2010) reported dissatisfaction with daily life and a changed attitude to new experiences (from seeing them as welcome opportunities for meeting challenges to anxiety-provoking). The authors proposed that the development of a person’s self-concept could be affected, because the onset of MS is in younger adulthood, when people typically take on new responsibilities and challenges and commonly develop life plans.

The literature shows that it is well accepted that MS fatigue can have a significant impact on an individual’s quality of life, ability to engage in activities, self-concept and relationships with others. However, because people’s daily lives differ enormously, understanding the unique presentation of and impact upon specific individuals’ daily lives is important.

Method

Research design

This study used an existentialist approach (informed by a phenomenological perspective) to thematic analysis (Braun and Clarke, 2006) that aimed to present the experiences of people with MS fatigue. The central concern of phenomenology is obtaining ‘rich descriptions of a phenomenon as it is concretely lived’ (Finlay, 2012: 17). We wanted to understand people’s experiences of MS fatigue in their daily lives as they described them. This research study was part of a larger study conducted in the USA and Australia that aimed to explore participants’ MS fatigue management strategies (Turpin et al., 2015) and used qualitative description with phenomenological overtones (Sandelowski, 2000) as its overall research design.

Participants

People with MS were notified of the study via advertisements through Multiple Sclerosis Queensland (MS Qld). Purposive sampling was used to ensure that participants could give informed descriptions of the phenomenon being investigated and people were eligible if they were over the age 18 and experienced MS fatigue. Participation was voluntary and written informed consent was obtained prior to participation. Thirteen individuals were interviewed in their homes. Of these, 11 were diagnosed with relapsing remitting MS (RRMS), one with primary progressive MS (PPMS) and one with secondary progressive MS (SPMS). The participants comprised two men and 11 women. The mean age of participants was 46.23 years (range = 25–67, SD = 13.39), mean number of years since symptom onset was 10.08 (range = 2–30, SD = 7.48) and since diagnosis was 5.23 (range = 1–14, SD = 3.79), and mean patient determined disease steps (PDDS) (Hohol et al., 1995; Marrie and Goldman, 2007) was 2.41 (range 0–5, SD = 1.44), indicating that people did not have any limitations in their walking ability, but did have significant problems due to MS that limited daily activities in other ways.

Data collection

Prior to conducting the study, ethical approval was gained from the relevant university ethics committee. Participants engaged in individual in-depth, semi-structured interviews of approximately 60 minutes, using an interview guide with topics and general prompts. Interviews were conducted by a university occupational therapy academic and every effort was made to ensure that participants felt comfortable talking about their experiences (for example they were not challenged on any views). The data set (Braun and Clarke, 2006) used for the study reported in this paper was responses to questions about the following: the participant’s typical week (to determine their interests and valued activities) and the participant’s perspectives on their MS fatigue and its impact on their everyday life, health and wellbeing. Interviews were digitally recorded and transcribed verbatim. A summary of the interview and a feedback form were sent to participants asking whether the summary accurately reflected their experiences and if they had anything to add. All participants confirmed that the summary reflected their experiences and the additional information provided by one person was added to the data.

Data analysis

Thematic analysis was used to capture meaning that appeared important to participants and to identify emerging patterns (Braun and Clarke, 2006). Two researchers read and re-read the transcribed interview responses. Statements of meaning that encapsulated the sense of text segments were produced then grouped together to form initial categories. Each step of analysis was undertaken by one researcher and re-examined by the second, with each taking turns in the roles of analyst and re-examiner. Any differences were resolved by consensus. Two other researchers scrutinised the development and refinement of categories to ensure they accurately represented the data. Reflective journals were kept by the analysing researchers and key issues raised were discussed by the larger team of researchers.

Findings

Three themes were identified. Firstly, participants discussed how they learned about MS fatigue and often struggled to identify it in their lives, because they were uncertain whether to attribute specific experiences to fatigue or other contributing factors. Secondly, they had to adjust their lives and expectations to accommodate fatigue. Thirdly, they had to help others understand it. These three processes interacted. Each is described in more detail and pseudonyms are provided for all participant quotes.

Becoming aware of MS fatigue and making sense of experience

When asked about MS fatigue, participants had no trouble describing it. However, a struggle was evident in their descriptions regarding making sense of their experiences. First, they described learning about fatigue as a symptom of MS. Second, they discussed the difficulty of determining whether a specific occurrence was MS fatigue or something else.

People came to know that fatigue was a symptom of MS in a variety of ways. Some people were informed by health professionals such as MS nurses and through MS fatigue workshops. One participant reported that it was her psychiatrist who recognised her fatigue:

She basically said to me last year – ‘You know, you’re always tired. And I don’t think it’s got anything to do with the stuff that you and I talk about. I think you’d better get it investigated’. … And then I started to actually become aware that I was very tired. (Katherine)

Others reported that they had never specifically been informed that fatigue was a symptom of MS, but discovered it through their own research or working it out themselves. As one participant said: ‘No-one’s told me that it’s fatigue. I always, along this journey, I just complain about being tired all the time, so I just figured that that’s what that is’ (Lisa).

Being informed by a professional was often merely the initial source of information that prompted participants to undertake further research. Most participants reported actively accessing at least two or three other sources of information. Most commonly these included talking to others with MS fatigue and reading or hearing their stories, either in person or through social media sites and forums. Comparing these stories with their own experiences was validating and allowed them to recognise aspects of their own lives that could be explained by fatigue. Other commonly identified sources were books, the internet and MS fatigue courses. One participant stated:

So, doctors won’t give you that information – like I had to actively seek it from other places, be it the internet, be it MS Qld – I just got on to them straight away, as soon as I was diagnosed. You know, I went ‘I’m not going to have no information’. (Patricia)

Participants said that learning about fatigue as a symptom of MS helped them to understand why they were feeling tired and to notice their fatigue more frequently and in different circumstances. They became aware of the difference between MS fatigue and ordinary tiredness, describing it as relentless, severe and not improved by sleep. Receiving a diagnosis seemed important to developing this understanding, because it provided people with an explanation of their fatigue (often diagnosis came much later than symptom onset). One participant described her earlier experience of not having a diagnosis and, therefore, not being able to understand her experience:

Once you’ve tried as extensively as you can to work out why you’re feeling how you’re feeling and it all comes back – ‘you’re a young, fit, healthy woman, there’s nothing wrong with you, go and enjoy life’ – and you’re feeling exactly the opposite, you start thinking, ‘Well if the doctors can’t physically find anything, maybe I am going a bit mad’. (Lisa)

Participants had to become aware of how MS fatigue presented in their lives. This included recognising when they were fatigued, how it uniquely manifested in their life and the circumstances in which it appeared more likely to occur. Awareness appeared to depend on factors such as the onset and severity of the fatigue and the nature of the activities in which they sought to engage. For some, onset was gradual and evident during physical activities such as playing sport and at the gym. For others, it was sudden, often persisting after one severe attack. This was the case for one participant who said:

I had a pretty full-blown attack … it got to the point where maybe I could stand up for two or three minutes in a shower, but that was pushing it. And that was for about six weeks where I had that fatigue. And then it gradually got better, but never completely. I’ve always had this, where it’s affected my lifestyle since then. (Michelle)

Despite knowing that fatigue was a symptom of MS, participants struggled to determine whether a particular experience was due to the condition or not. People wondered whether the fatigue they were experiencing could be the result of other factors such as getting older, not sleeping well, feeling tired after eating, doing too much in their life and working long days. For example, one participant explained that ‘I kind of put it down to having a new daughter, seeing I’m very tired all the time. Yeah, there’s always things you can attribute that to’ (Margaret).

Most commonly, particularly before having a diagnosis, participants questioned whether they were ‘just being lazy’. This concern was often associated with guilt. As Christina stated: ‘I feel guilty lying on the bed and having a rest. I just feel guilty’ cause I just – there’s jobs that I should be doing’. Even with an MS diagnosis, one participant remarked that she wondered if, at times, she used her MS fatigue to avoid some activities. However, knowing that fatigue was a symptom of MS helped alleviate the guilt people felt.

Adjusting their lives and expectations

Having accepted MS fatigue as a reality, participants accommodated and planned for it in their daily lives. They expressed a sense that they had learned over time that there would be consequences if they didn’t do this. However, they used a variety of approaches to deal with it.

Many participants discussed learning to accept that their capabilities had changed and that resting and planning now needed to be a regular part of their lives. Almost half the participants discussed accepting the permanence of fatigue. For example, one participant said: ‘You realise that it’s part of you, and it’s going to get you anyway. So you think, “no, don’t try and fight it, you’re going to lose”’ (Rachel). Participants reported that, because of MS fatigue, they made more mistakes, took longer to complete tasks and found tasks physically and/or cognitively more difficult.

Participants discussed learning to pay attention to their level of activity. They often reported increased fatigue resulting from doing too much, potentially culminating in being bedbound for multiple days or being admitted to hospital. One participant stated:

I just knew that I would be pushing myself. Some weeks you can do it – and then other weeks you just can’t – I’m learning. I haven’t been very good at that. But I am learning. When you have a few hospital stints, you learn. (Christina)

Fear of experiencing a high level of fatigue appeared to motivate some participants to develop or maintain successful strategies for resting and planning. By listening to their bodies, they acknowledged the fatigue and rested when required. They believed the alternative was forced rest and further limitations to participation. However, in some circumstances they considered the cost of greater fatigue worthwhile. For example, tasks or events that were very important to them, such as important family occasions, were often considered worth ‘paying the price’.

Two participants expressed alternative views. One young man made the conscious decision not to accommodate for fatigue in his life. He said: ‘I’m a lot more aware. I know I’ve got MS, I’ve got the symptoms and all of that, but I’m still trying to put them aside and just trying to carry on’ (Joseph). Another participant said she had learned to accept the feeling of fatigue and participate in activities despite this. She explained:

You can’t trust your body any more. You can’t trust your brain. So, it’s not like you can listen to your body and go, ‘oh, I need to rest’. I mean, you can within reason, but if I’d listened to my body for the last four years, I wouldn’t have left my house. (Lisa)

MS fatigue impacted upon participants’ expectations regarding standards, generally and for themselves. Some participants adjusted the standards they would accept for task completion. For example, one participant explained her changed expectations regarding the house, saying: ‘Yes, this is the lady perfectionist – everything [had] to be spotless and it was just perfect. And I’ve learnt not to bother with that anymore, because it just wastes energy’ (Sarah). For others, lowering their expectations was not acceptable and, instead, they opted to change the way the task was completed. They might ask others to assist them to complete a task to their expected level or to do it for them. Examples included having hair washed by a hairdresser and having family members do housework tasks. This process was not easy, because asking others to do ‘their’ tasks reduced their sense of independence. As Lisa explained:

I think it’s been hard for me – or challenging to ask for help from other people because I can actually do it myself, but I won’t do the job to the level that I would like to do it if I wasn’t tired.

MS fatigue seemed to have implications for self-concept. Participants described changes in themselves before and after developing MS fatigue. Before being affected by fatigue, they described themselves as ‘spontaneous’, ‘active’, ‘on-the-go’ and ‘multi-tasker’. Descriptions of themselves afterwards included ‘creature of habit’, ‘planner’ and ‘a one-task-at-a-time person’, ‘slower’ and ‘quieter’. Reducing or eliminating some roles and activities appeared to change the way participants thought about themselves. Examples included work-oriented people being forced to give up work; people who defined themselves as active having to give up exercise, leisure activities, chores and errands; and people who loved spending time with others having to reduce or change their amount and types of social interaction. One participant explained that the loss of roles was accompanied by a loss of opportunity and choice.

Helping others understand

Participants believed that, in addition to coming to terms with MS fatigue themselves, they had to help others understand. Most frequently, participants commented on the difficulty of helping others grasp the difference between ordinary tiredness and MS fatigue, because people generally thought in terms of their own experiences of tiredness. Participants tried to convey that its severity was quantitatively different and was not the result of their choices, such as to stay up late. Participants most commonly attributed others’ lack of understanding to the invisibility of fatigue. They also discussed other people’s lack of awareness and ignorance regarding MS fatigue and associations made with other stigmatised conditions such as chronic fatigue.

Probably it’s just general ignorance, if they’re not aware of it or they’ve not heard of the fatigue involved. And why would they know unless they’ve got somebody, maybe at home, that complains of it too? And they sort of say, ‘Oh yes, I know, I get so tired’. And I think, ‘How annoying. You know, no you don’t, YOU DON’T!’ (Rachel)

Many participants tried to educate others about MS fatigue and explain their continued tiredness. However, they felt that people still struggled to understand. Some believed that other people did not want to hear about their problems and therefore refrained from talking about them. Others said that they simply decided it was not their problem if others had difficulty with the issue or did not understand.

Participants often worried about how they were perceived by others, especially in social situations and with those outside their immediate circle. They feared they would appear stupid or as a nuisance, be viewed as different from others or withdrawn and rude, or be seen as the person who is ‘always cancelling’.

Because I think if people see me and they don’t understand [the MS fatigue] and I’m being withdrawn, they will just think I’m rude or they’ll think ‘oh she doesn’t like me’ or ‘she’s got depression’, or they’ll think all the stuff about me or they’ll be offended. (Michelle)

Some participants were reluctant to tell others MS fatigue was the cause of their behaviour, because they thought they would not understand. Some feared that others would believe they were using MS fatigue as an excuse.

People managed social situations in different ways. Some emphasised the importance of stating that they were unable to attend, rather than cancelling at the last minute. Some chose alternative ways to decline an invitation, for example, saying they were already busy. Two participants said they would prefer to go to the event and deal with the consequences later.

If they understand the fatigue, and the MS thing – I’ll be like, ‘I’m just having a crap day’. They’re like, ‘fine, no problem’. Whereas someone else will say, ‘but why?’ and it’s like, ‘I don’t want to explain it again’ … So, and in that case it’s like, ‘fine, I’ll come to something for a short time’. (Amelia)

Participants often explained that they were cautious of being reliant on others as they would be unable to leave when feeling fatigued. Therefore, they would use strategies such as driving themselves.

Participants dealt with the invisibility of the fatigue in different ways. Two people explained that, while not physically needing a walking stick, having one might be useful in helping others understand that they had a disability. Others hid their difficulties and, thus, avoided the stigma associated with disability.

Discussion

Three themes were reported in this paper: becoming aware of MS fatigue and making sense of experience; adjusting their lives and expectations; and helping others understand. These themes are discussed in terms of lay and expert concepts of health and illness, the phenomenological notion of embodiment, self-identity and the stigma associated with invisible disabilities.

Becoming aware of the impact of MS fatigue

Participants’ understandings of MS fatigue in their lives were influenced by both lay and expert conceptualisations. The term lay concepts of health and illness refers to ‘the meanings people give to experiences of illness’ (Habibis, 2014: 265), which typically result from sources such as personal experiences, knowledge of the experiences of others and perceptions passed down through the family. Our research participants referred to both their own experiences and hearing about those of others. They did not indicate perceptions gained from their families; however, to elicit such perceptions would require intentional exploration (for example of their family’s expectations regarding ways of responding to illness). The expert conceptualisation – that fatigue is a symptom of MS – was frequently discussed by participants as central to their interpretation of experience. This explanation facilitated their awareness of MS fatigue and generally gave legitimacy to their experiences.

While other research reported that people with MS increased their knowledge over time (Kirkpatrick Pinson et al., 2009), we found that expert knowledge, which is largely generalised knowledge, was important but insufficient for understanding how MS fatigue manifested uniquely in participants’ own lives. Even with a clear diagnosis of MS and knowledge that fatigue is a common symptom, participants still struggled to understand its specific effects in their lives, and many times they remained unsure of whether a certain experience was due to MS fatigue or not. Jopson and Moss-Morris (2003) proposed that the unpredictability of MS symptoms could explain a tendency to misattribute symptoms to MS. Participants in our study seemed concerned that they were unable to determine whether a specific instance was due to MS fatigue, represented a character flaw or was opportunistic (being lazy or avoiding work). For example, they frequently reported experiencing guilt with regard to resting. While participants did not discuss ways they managed this guilt, they did acknowledge the power of diagnosis in providing an external validation for their fatigue experience, and often took solace in knowing that fatigue was a ‘normal’ part of having MS.

The extent to which one’s body should be listened to pervaded participants’ discussions of MS fatigue. It was evident that heaviness and fatigue were central to their experience of their bodies. Most participants discussed the importance of listening to their body and resting when becoming fatigued, as well as factoring rest into their daily and weekly planning. However, some participants emphasised the importance of not listening to their bodies, because ignoring their body enabled them to participate in life in a way they otherwise would not.

The role of the body in experience features in phenomenology. Merleau-Ponty (2012) used the term ‘embodied experience’ in discussing how bodies shape experiences. The concept of ‘lived experience’ (van Manen, 1990), that is, experience as it is lived, provides a useful framework for understanding experience in everyday life. Emphasising the role of the body in lived experience, Kielhofner (2008: 70) referred to the ‘lived body’. The body is largely invisible in our ordinary experience of the world (the ‘natural attitude’ in phenomenology). However, it features more prominently in our consciousness when we ‘can no longer use our bodies in the customary ways and/or when consciously reflect[ing] on our lived experience’ (Finlay, 2011: 31). As Langan (2007: 250) stated, ‘Illness brings us back to the body’. In research with people with MS, participants explained that their fatigued bodies did not feel natural and could not be taken for granted (Flensner et al., 2003) and they felt betrayed by their bodies, which often did not do what they wanted (Flensner and Rudolfsson, 2016).

Adapting to life with MS fatigue

Accepting that fatigue would be a permanent aspect of their lived (embodied) experiences was important to our participants. With this acceptance as a foundation, participants made choices when managing fatigue in their daily lives. They developed daily and weekly routines that factored in fatigue (such as planning for rest breaks), but were also prepared for the cost, in terms of fatigue, of prioritising special events or courses of action that would maintain their relationships and sense of self (for example attending an event when they were feeling fatigued). Kirkpatrick Pinson et al. (2009) found that people with MS reported being more willing to confront problems and to experience anxiety and difficulty over time (their participants had a mean of 17.5 years since diagnosis) and to approach things differently as their abilities changed. They concluded that, as people with MS become more attuned to their own condition, they became less anxious about the potential outcomes of the disease and more proactive in coping with it.

Self-identity can shed light on this change in attitude over time. It is defined as ‘a complex structure centred in memory and cognition that helps define who we are, how we relate to others, and our place in the world’ (Fortenberry et al., 2013: 1742). It is constantly changing, and is often tied to social roles. For those who experience chronic and degenerative illness, loss of roles can change the way people regard themselves and perceive that others view them. Participants in our study described that they began to perceive themselves differently by changing their expectations of themselves and altering their self-defining tasks. These changes could be referred to as the narrative reconstruction of self-identity (Kralik et al., 2003; Williams, 1984). When people embrace this changed self, it affirms their image to others and to themselves.

Helping others understand a hidden disability

Participants in our study struggled with managing others’ understanding and expectations. Other people’s lack of knowledge and the invisibility of MS fatigue appeared to be the underlying causes of this lack of understanding. This aligns with research by White et al. (2008), who reported that the invisible symptoms of MS caused high levels of distress, and stated that ‘individuals with invisible disabilities often struggle to convince others that they do not seek an unfair advantage, such as using a handicapped parking spot’ (85).

Scambler (2009: 443) explained that Irving Goffman’s concept of stigma is generally

… mined for its perspicacity on the often poignant day-to-day dealings of the ‘discredited’ (possessors of visible marks of unacceptable difference, whose challenge is to ‘manage impressions’) and the ‘discreditable’ (possessors of invisible marks of unacceptable difference, whose challenge is to ‘manage information’).

Using this framework, MS fatigue can be understood as an invisible mark, and those experiencing it as potentially discreditable and charged with managing information. The participants in our study managed information relating to MS fatigue in a variety of ways. At different times and in different circumstances, they chose to explain the phenomenon, keep it hidden and act as if they did not experience it (such as put in an appearance at an event), or wish they could make it visible (for example by using a walking stick).

Clinical implications

Occupational therapists can play an important role in helping people with MS fatigue become aware of how it specifically manifests in their own daily lives. They can help their clients develop strategies to deal with it and to manage its influence on their relationships with others. They can seek to understand how these issues interact in the life of each person with MS fatigue. It would be important to explore the explanations people are using to understand their fatigue, as these will have implications for how they choose to deal with it. For example, people might feel guilty for resting when they are fatigued if they doubt their own motivations for resting. Alternately, their experiences will be very different if they live in an environment where having an afternoon rest is routine. Occupational therapists can also have conversations with people about the different ways they might respond to their embodied experience of MS fatigue, because MS generally results in changed capacities over time that often necessitate changes in roles and have implications for a person’s self-identity. Paying particular attention to each person’s self-identity by listening carefully to the way they are narrating their experiences and re-constructing their self-identity as their capacities change over time is an important strategy. Self-identity needs to be considered when assisting people to use fatigue management strategies to adapt to these changes by planning their daily lives and maximising engagement in occupations that are important to them. Occupational therapists can also have conversations about how they might communicate about their fatigue differently to various people in their lives.

Strengths and limitations

This study was completed as a part of a larger study that aimed to explore the strategies that people currently use to manage their MS fatigue. Consequently, while the interviews elicited valuable information about the effects of fatigue in participants’ lives – raising issues relating to awareness of fatigue in their daily lives; helping themselves and others understand fatigue and the impact of fatigue on self-concept – this was done to provide a context for understanding the strategies that people used to manage it. While this study provided an exploration of these issues with a small number of people with lower levels of disability, a larger study exploring these issues directly, in greater depth and with people affected by MS fatigue with a broader range of severity would be valuable.

Another possible limitation of the study is the use of a single interview rather than prolonged engagement, whereby an understanding of the impact of fatigue could be gained over time as people’s capacities and life circumstances change. A strength of the study was that the participants included were diverse in age, gender, years since diagnosis and years since symptom onset. Each of the 13 participants provided rich, detailed and in-depth information during the interview and this was useful in gaining a preliminary understanding of these issues. The use of semi-structured interviews allowed participants to speak freely and discuss any issues they felt were significant.

Conclusion

In conclusion, this study shows that participants developed an understanding of MS through information from health professionals and seeking information from resources and the stories of others. People came to understand over time how MS fatigue manifests in their daily lives and to make choices about how they would accommodate it. This process is individual and dependent on how each person perceives the fatigue, their self-identity and circumstances, and experiences of others’ understandings and expectations. Occupational therapists can play an important role by assisting people with MS fatigue to develop their awareness of MS fatigue, adapt effectively to lifestyle changes, rebuild self-identity and manage others’ understanding and expectations.

Key findings

People use a variety of sources for knowledge of MS fatigue, including professionals, other sources (such as books, the internet, MS fatigue workshops) and stories from others.

People learn over time how MS fatigue impacts upon their daily lives and make choices regarding how to accommodate it.

People with MS attribute others’ lack of understanding to the invisibility of MS fatigue and limited knowledge.

What the study has added

Living with MS fatigue requires reconstruction of self-identity and dealing with the stigma associated with invisible disabilities, and involves guilt and confusion and a sense of betrayal by the body.

Footnotes

Research ethics

Ethical approval was obtained from The University of Queensland Behavioural and Social Sciences Ethics committee on 29 September, 2011, approval number 2011001023. All participants provided written informed consent.

Declaration of conflicting interests

The authors confirm that there is no conflict of interest.

Funding

The authors disclose receipt of the following financial support for the research to which this article pertains: The Consortium of Multiple Sclerosis Centers, United States of America.

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