Acceptance and identity change: An interpretative phenomenological analysis of carers’ experiences in myalgic encephalopathy/chronic fatigue syndrome

Abstract

Myalgic encephalopathy/chronic fatigue syndrome is a debilitating condition and many people rely heavily on family carers. This study explored the caring experiences of seven family carers. Four themes were established: relations with others, role and identity changes, coping with change and uncertainty, and information and support seeking. Caring disrupted multiple areas of carers’ lives, including their identities and relationships. Scepticism from others about myalgic encephalopathy/chronic fatigue syndrome was particularly distressing. Acceptance was important for coping and helped some carers achieve positive growth within spousal relationships. Improving support and advice for carers and acknowledging their caring burden could improve their well-being.

Keywords

chronic fatigue syndrome family interpretative phenomenological analysis qualitative methods well-being

Introduction

Myalgic encephalopathy/chronic fatigue syndrome (ME/CFS) is a chronic condition which can cause profound disability and a high level of functional dependence on family members (National Institute of Health and Care Excellence [NICE], 2007; Williams et al., 2019). ME/CFS has an unknown aetiology and variable, fluctuating symptoms including fatigue, joint and muscle pain, headaches, sleep disturbances, gastric problems and cognitive problems (NICE, 2007). Uncertainty about its origins, prognosis and duration can cause emotional distress, and people with ME/CFS have lower scores on well-being and functional status than people with other chronic diseases, including stroke and cancer (Ax et al., 2002; Dickson et al., 2007; Larun and Malterud, 2007; Nacul et al., 2011).

People with ME/CFS are usually supported at home by family members who assume the role of carer (Nacul et al., 2011). A ‘carer’ is someone who looks after a person who, due to illness, disability, a mental health problem or an addiction, cannot cope without their support. ‘Informal’ is used to differentiate those who provide voluntary care from paid care professionals (Carer’s Trust, 2017; Department of Health, 2014). In this study, ‘carer’ is used to mean informal family carers as described above.

Qualitative studies report scepticism from healthcare professionals about the legitimacy of ME/CFS leaving many people feeling stigmatised and unsupported by doctors and others around them (Anderson et al., 2012; Dickson et al., 2007; Drachler et al., 2009). This creates a burden for people greater than their physical symptoms alone (Larun and Malterud, 2007) and increases the importance of support from family carers (Dickson et al., 2007). Carers’ understanding and acceptance is an important factor in facilitating coping in people with ME/CFS (Dickson et al., 2007). It has also been suggested that carers’ beliefs and levels of distress influence their interactions with the patient, affecting how well patients manage their symptoms (Band et al., 2014).

It is important to build on research looking at how ME/CFS affects carers’ well-being. Chronic illness is known to have negative effects on carers’ physical and psychological health (Goldberg and Rickler, 2011). A cross-sectional questionnaire study showed that ME/CFS carers have lower scores in mental and physical health than the general population (Nacul et al., 2011). There is little qualitative research focusing on carers’ experiences of ME/CFS. Some studies suggest they may feel isolated and find the lack of understanding from others and uncertainty surrounding diagnosis, illness course and management difficult to cope with (Brooks et al., 2014; Donalek, 2009; Hannon et al., 2012; Harris et al., 2016; Mihelicova et al., 2015). However, one qualitative study involving semi-structured interviews with 17 informal carers reported that carers accepted ME/CFS relatively easily (Ax et al., 2002). This study aims to improve understanding about caring in ME/CFS by looking indepth at the lived experiences of family carers.

There is no clear consensus on the most appropriate term to describe this illness or whether ME and CFS are the same or related conditions (NICE, 2018; Sharpe, 2002). This study used ‘ME/CFS’, a compromise term adopted by the English Chief Medical Officer’s Working Parties’ report that has been used widely in healthcare services in the UK (NICE, 2018; Sharpe, 2002).

Methods

Design

This study used a qualitative design with semi-structured interviews. Data were analysed using interpretative phenomenological analysis (IPA; Smith, 2004). IPA has been used successfully to explore attitudes and experiences of ME/CFS patients (Arroll and Howard, 2013; Arroll and Senior, 2008; Dickson et al., 2007). IPA has been described as particularly useful to provide insight into complex, ambiguous and emotionally laden subjects (Osborn and Smith, 1998), making it an appropriate method to explore caring experiences in a stigmatised chronic condition. In IPA, the researcher draws out themes showing the meaning of the phenomenon from the participant’s perspective, but also reflecting the researcher’s own interpretation (Smith, 2004). The approach is phenomenological in the sense that it involves getting as close as possible to the participant’s personal experience, but it also has a strong theoretical basis in hermeneutics (interpretation) because it acknowledges two levels of interpretation: that is, from both the participant and from the researcher (Smith et al., 2009).

Procedure

The study received ethical approval from the University of Derby Psychology Research Ethics Committee. Participants were recruited by advertising on the UK-based ME Association’s and Action for ME’s websites. Participants responded to the advertisements by emailing the first author to express their interest. Those who met the inclusion criteria were sent an information sheet, consent form and demographic data sheet. Inclusion criteria were: aged 18 or above, and living with and providing unpaid care and support (e.g. emotional and/or practical support) to an adult aged between 18 and 65 with a diagnosis of ME/CFS made by a general practitioner (GP) or specialist.

After signed consent forms were received, the first author contacted participants to arrange a one-to-one interview. All participants who returned consent forms went on to complete the study. Interviews were carried out by the first author by phone (n = 6) and Skype (n = 1), and recorded using a digital voice recorder. An interview schedule was constructed (see Appendix 1), using open-ended questions such as ‘Could you please tell me about your experience as a caregiver for someone with ME/CFS?’ Interviews ranged from 42 to 76 minutes (x = 55.43 minutes) and were transcribed verbatim. Participants were given a pseudonym.

Participants and sampling

Seven participants (three women and four men) were recruited, all of whom lived in England. Their ages ranged from 34 to 62 (x = 51.9; SD = 9.95). Mean length of caring was 8.5 years (SD = 8.46). Participant characteristics are shown in Table 1. All carers had known the care-recipient since before diagnosis and were a spouse (n = 5) or parent (n = 2). Carers described care-recipients as being diagnosed with CFS (n = 2), CFS/ME (n = 2) or ME (n = 1) with two carers not specifying. Carers were also asked to state illness severity; this can vary widely so could lead to variations in caring demands. Severity can be classified as mild, moderate or severe depending on the impact on daily life and functioning (NICE, 2007). Where illness severity was not provided, NICE criteria were applied using descriptions of the care-recipient’s condition (see Table 1).

Table 1.

Participant characteristics.

Pseudonym	Relationship to person with ME/CFS	Age of carer	Years of care	Employment status of carer	Diagnosis and illness severity of care-recipient
Liz	Wife	43	10	Part time	CFS Moderate
Marcus	Husband	54	25	Part time	Diagnosis not specified Moderate to severe*
Andrew	Husband	53	6 months	Full time	CFS Mild to moderate*
Helen	Mother	58	1	Not working	CFS/ME Moderate
Christina	Mother	62	4	Retired	ME Moderate to severe
Scott	Husband	34	7	Full time	CFS/ME Moderate*
John	Husband	59	12	Retired	Diagnosis not specified Moderate

ME: myalgic encephalopathy; CFS: chronic fatigue syndrome.

Information not supplied by carer but estimated by applying NICE criteria to carer descriptions.

Recruitment stopped after seven interviews. A sample size of six–eight participants has been suggested as an optimal number in IPA to allow examination of similarities and differences between individuals (Pietkiewicz and Smith, 2014). Data were analysed following the four-stage IPA process described by Smith and colleagues (2009). The first author began by reading through each transcript several times to become familiar with the data. During this process, notes were made on potential themes in each transcript. As each transcript was analysed, the researcher returned to previous transcripts to refine themes in light of new information. Individual themes from all transcripts were recorded in a single table along with illustrative quotes, colour-coded by participant and given line and page number references. When all seven transcripts had been analysed, the first author sorted and categorised recurrent themes, exploring and defining them in more detail and grouping them into clusters under overall ‘superordinate’ themes. In addition to providing advice and feedback on methodology throughout the project, the second author provided validity by reviewing transcripts against the first and final iterations of the coding table to ensure that themes were representative of the transcripts and, thus the analysis was supported by the data (Osborn and Smith, 1998).

Reflexivity

This article presents the IPA researcher’s lens through which participants’ experiences can be viewed. It is therefore important to recognise the researcher’s own starting point (Ahern, 1999; Brocki and Wearden, 2006; Smith et al., 2009). The first author has personal experience as a spousal carer in ME/CFS and this undoubtedly affected the research process and coloured her interpretations. She adopted a reflexive approach by taking personal notes during the interview period. For example, in a note after interview 1:

I was expecting her to be more angry about how the disease has stolen her normal life. She seemed sad but accepting, although they have not lost hope, but she is prepared for what may happen if he continues to decline.

This enabled her to shine a light on where participants’ reality departed from her own preconceptions, and to see what was there and not what she expected to see. This approach is recommended by Ahern (1999), who suggests that it is more productive to try to understand the effects of one’s own experiences, than to ‘bracket them off’.

Findings

Four superordinate themes were established: relations with others, role and identity changes, coping with change and uncertainty, and information and support seeking. Each superordinate theme is described briefly below, followed by a more detailed explanation of the specific sub-themes within each superordinate theme. Themes are summarised in Table 2. Quotes were chosen from each transcript that were considered to best illustrate each sub-theme.

Table 2.

Brief definitions of themes.

Superordinate theme	Sub-theme	Theme description
Relations with others	Negative reactions	Carers were distressed by misunderstanding and scepticism from family and friends about ME/CFS. Carers found it hard to explain its effects to people and felt forced to defend its legitimacy as a physical illness, which invalidated their caring burden.
	Reduced social networks	Carers received limited social support because social contact was more restricted than before and carers felt isolated when their caring burden was dismissed. Some carers reacted by withdrawing into their family units to protect themselves from negative reactions.
Role and identity changes	Carers’ shifting roles	Carers experienced confusion about their identity when they took on new roles and responsibilities and lost previous roles or identities that were important to them.
	Relational impact	ME/CFS changed the care-recipient’s identity and carers experienced this change as a form of bereavement; identity changes had a relational impact on couples because they could no longer enjoy shared activities or relate to each other in the same way; parental carers mourned the perceived loss of their child’s future.
Coping with change and uncertainty	Acceptance	Carers believed acceptance was an important coping strategy and it allowed some carers to adapt to the uncertainty of their situation and even to find some positive aspects; acceptance was easier for carers with a lower perceived caring burden. Day-to-day acceptance was counter-balanced by maintaining hope for the future.
	Problem-solving coping	Carers used active problem-solving to deal with specific challenges and improve their quality of life, for example, making holidays or social visits possible by building more flexibility into plans, making lifestyle changes to address symptoms or to make the caring burden easier.
Information and support seeking	Lack of professional support	Carers had encountered healthcare professionals who were sceptical or ill-informed about ME/CFS. Specialist ME/CFS clinics had helped some care-recipients with coping and symptom management but did not offer tailored, useful information for carers and were not always easy to access.
	Online ME/CFS community	Carers sought information and support from the ME/CFS community by researching and sharing experiences with others in online ME/CFS forums. Information-seeking helped carers maintain hope and provided social support.

ME: myalgic encephalopathy; CFS: chronic fatigue syndrome.

Relations with others

A significant theme among carers was changes in relations with those around them, particularly friends and family. Social relationships and networks changed over time as social contact became more limited, and as a result of the social stigma associated with ME/CFS. Two sub-themes were discerned: negative reactions from others and reduced social networks.

Negative reactions

Carers found it difficult to explain the symptoms of ME/CFS to others and were often met with incomprehension or scepticism, which was upsetting:

I would have to explain it to people and they would say ‘Yeah, but you know, if she just got up and did something surely you know, oh you know, her muscles might be bad, but they would be if she sat in bed all day, do you know what I mean? That sort of thing. And that’s hurtful to her and me really. (Marcus)

People talk about fatigue and I think sometimes there’ve been occasions in the past where I’ve had to say to myself, just, just leave it alone because people say, it’s just a little bit like ‘Oh yeah, I get tired’, and it’s kind of you kind of go, ‘Ah okay. Yeah okay’. (Liz)

It’s really horrible, even me, and [I’ve] got knowledge of it, it’s really hard to explain to somebody else what somebody’s going through, yeah. So she finds it frustrating and I find it difficult to explain to somebody… (Helen)

Some carers acknowledged that they could see how people found ME/CFS hard to comprehend, especially because people with ME/CFS do not ‘look ill’. Despite this, they felt upset when this invisibility led to negative reactions and they were upset about having to defend the legitimacy of the illness:

I’m surprised by the lack of support by my family as well. For a long time my sister thought it was psychological and you know, just… And I thought well you’re not living with it. Anybody who thinks that it is should come and live with it, because it’s like living with somebody with late-stage terminal cancer. (Christina)

Christina highlights her surprise that even close family members are sceptical of her daughter’s illness. The strong retort she issues to her sister (‘well you’re not living with it’) shows how hurt she is by this. Not only is her daughter’s condition in doubt but also therefore Christina’s own caring burden is being dismissed and she feels disbelieved and unsupported. Her forthright challenge that people should come and experience it for themselves, and her strong comparison with late-stage cancer emphasise her distress about the gulf between her family members’ ignorance and the immense impact of ME/CFS on her life.

Reduced social networks

Carers reported receiving some helpful support from friends or family but most found that caring reduced opportunities for social contact. Over time, some carers began to withdraw from others. In part, this occurred because of restrictions on social activities. For some it was also to protect themselves against dismissal by others:

In the end sometimes you think I’m not going to tell any more people, I’m going to keep it inside, because what’s the point, nobody has got a clue about what this means to our lives. (Christina)

We’ve, I suppose we went into our own little shell as a family unit, the two of us and it’s meant that we’ve not done a lot of stuff socially. (Marcus)

So I just let them kind of get on with it, cos there’s no point really. Um yeah but I think people don’t quite, I think that’s the problem it’s, people don’t quite understand, um, what a difficult disease it is. (Liz)

Both Liz and Christina describe how ‘pointless’ it feels to try and make people understand. There is a strong sense of how isolating this has been, and it makes them withdraw rather than risk further negative experiences. Christina is not fully resigned to this however; later in the interview she says she has changed tack and has started trying to educate people (‘I try and tell two people a week who’ve got no idea about it’). So, despite her anger and sense of betrayal at being doubted in the past she is compelled to keep fighting for understanding.

Thus, the perceived social stigma of ME/CFS distresses carers as well as patients and contributes to social withdrawal. Carers are the care-recipient’s main source of social and emotional support and yet they are receiving reduced support themselves, leading to emotional vulnerability and isolation.

Role and identity changes

The theme of changing roles and identities was significant. As their caring responsibilities increased, many aspects of carers’ previous familiar lives gave way to accommodate their caring role. This was seen as two related sub-themes: changes in how carers saw themselves as a result of their shifting roles and the relational impact of caring.

Carers’ shifting roles

Carers experienced role changes within relationships or families. Most took over a larger proportion of household responsibilities, often alongside work or other caring responsibilities. Carers saw themselves in new ways as they took on new responsibilities or lost roles that had been important to them. Scott explained how taking on the bulk of parental responsibility made him feel ‘like a single father’, while John was obliged to take over house repairs, something his wife had always been good at and which he ‘hates’. Scott used a social comparison to show how his wife’s ME/CFS has changed his life beyond recognition:

I look at friends and colleagues around the office, and what they’re doing, they’ve got a totally different life to what I’ve got. (Scott)

Caring had changed what was possible for carers in their lives, both now and in the future. Christina gave up a newly launched career as an artist to focus full-time on caring, while Marcus has had to accept he will never become a father one day:

I always assumed I would have children, you know, I love being an uncle and that’s a great source of joy for me, you know, having nieces and nephews that I could spoil. But, you know, I never really had the choice to have children … um… I think that’s been a difficult thing. (Marcus)

Parental carers were surprised at finding themselves back in a caring role for their adult children. For Christina, this meant treading a fine line between providing care and respecting her daughter’s independence:

You can’t decide for her because you’ve got to let her decide, so we talk about things in a group. As a family, because we can’t revert her back to being that child, because she’s not, she’s an adult and she’s a person in her own right, but she’s dependent on us, which really, really upsets her. (Christina)

Not all carers were content to see themselves as a carer. Liz preferred to view her and her husband as equal partners, ‘you know, we’re still husband and wife’. However, as her husband’s dependence increased, she was beginning to recognise a shift in which she was taking on a carer identity, ‘I know that our relationship is not… it’s different to how it used to be’. She described how she increasingly needed to spend time ‘with other people who aren’t ill’, suggesting that she was seeking social support to help her cope with her shifting identity.

Thus, the life restrictions and challenges of caring can lead carers to question their own identity and feel that they have lost important aspects of themselves in the process of caring.

Relational impact

Carers reported ways in which they perceived the care-recipient’s identity had changed. Many described a sense of grief or loss of the person they had loved before ME/CFS. Liz used a powerful metaphor to illustrate this, when she described her husband ‘disappearing’ into his ME/CFS. Andrew described adapting to the loss of previous routines with ‘the old Samantha’:

It will be… at a weekend, we’re getting past that, but it was that feeling obliged that she still needed to be the old Samantha because it was the weekend and I was at home and we were together and it’s like ‘well, you know, you can’t be.’… and I’m learning to understand that because I’m learning more about it. (Andrew)

Parental carers grieved over their child’s previous identity as well as the life their child could be leading. Christina uses repetition to emphasise her heartbreak over wasted years of her daughter’s life:

You’ve got a beautiful person that you gave life to who is just wasting away here, in isolation, and it breaks your heart, it breaks your heart. (Christina)

Spousal carers also described sadness that activities previously enjoyed as a couple had been lost. For some this challenged how they viewed their relationship:

The woman I married was very active. And we were both very active. We did a lot of walking, we did a lot of, um, well we were both Scout leaders, we did a lot of camps and things like that as well, and something like, everything that we used to do together that was us, has changed and gone. (Scott)

In saying ‘the woman I married’ Scott showed that he no longer saw his wife as the same person she was. He also recognised that the activities they enjoyed together were a central part of their identity as a couple (‘that was us’) and losing these has changed the identity of their marriage.

Overall, carers lost aspects of their shared lives to ME/CFS, and had to adjust to the loss of the person they knew before the illness. Spousal carers were also forced to re-evaluate relationships.

Coping with change and uncertainty

A common experience was adapting to the uncertainties of ME/CFS. Although most carers held hopes of improvement in the future, they had also learnt to set themselves realistic expectations. Key coping strategies were acceptance and problem-solving and these were explored as separate sub-themes.

Acceptance

Carers believed it was important to accept their day-to-day caring and were in various stages of acceptance, which appeared to involve acknowledging their situation, finding new routines and setting realistic expectations. Some carers could even identify positives of ME/CFS, for example, spending more time together. Some spousal carers felt their relationships were still rewarding, or even stronger than before, and viewed caring as a chance to show their love and commitment:

And okay it’s not been a good time, so I do it because I love her, I want… you know, I want to support her, you know, etc, so I don’t feel any sort of resentment or anything like that. (Andrew)

I know people that it’s happened completely the opposite – that the caring partner has not been able to cope with it and they’ve split up you know, after a year or so. But that didn’t happen with us – I mean exactly the opposite to us, it’s brought us really close together. (Marcus)

Acceptance was easier for some carers than others. Andrew acknowledged that his wife’s ME/CFS has been ‘not that detrimental’ to him since the limitations on their lives were relatively minor. In contrast, Christina, who provides extensive full-time care for her daughter, described having gradually reached a state of ‘numbness’, as though reacting to a shock or bereavement. Scott also described a high carer burden. He felt frustrated about juggling full-time work, caring and raising their children and this sometimes caused friction with his wife. He described how he had accepted the situation but it appears to be out of resignation and a sense of duty. He feels he must accept it to keep their family together:

I think the biggest thing for me is I’ve accepted it, I think I could’ve quite easily said this isn’t for me and walked off, and gone, and then it would have been a different situation. (Scott)

To manage his uncertainty Scott redefines his idea of ‘normal’ in response to changes in his wife’s condition:

I’d hope she’d get more energy, does that make sense, and improve further. But I can’t see it improving anymore. This is the new benchmark… Yeah, and at some point she’ll get worse again, potentially, and then we’ll re-establish a new normal. (Scott)

Scott appears to hope that his wife will improve, but immediately contradicts this by stating that he doesn’t see how that will happen, suggesting conflict between his hopes and his expectations. He seems to feel he cannot allow himself to hope for a positive outcome that he fears will not happen. He reported how a recent improvement in his wife’s symptoms was reflected in his own well-being: ‘I’ve started to, as she’s got better, I’ve got better’. This suggests that Scott does not feel in control of his own well-being. His emotional state is closely tied to his wife’s health, making him vulnerable to further distress if his wife’s health worsens.

Those carers who reported a greater sense of acceptance did not perceive it as permanent. There was a fine line between day-to-day acceptance and keeping up hope:

Not that we’ve ever accepted it that this was going to be it forever… but, but I think we are both resigned to some extent that that a cure’s not going to be found for this. (Marcus)

There might be a potential cure on the horizon in the future but if not, I generally think that my caring role will extend really. Erm… cos you don’t just get better from it. (John)

Acceptance was therefore important in helping carers cope with everyday life and with the possibility of short-term fluctuations in the care-recipient’s symptoms. It was viewed as a temporary coping strategy because carers did not want to give up hope. For some spousal carers it also allowed them to see positives in their situation. There was not a clear relationship between length of caring time and acceptance; instead it appeared that acceptance was more difficult the greater the impact on carers’ lives.

Problem-solving coping

Most carers employed problem-solving coping to address specific tasks or improve their day-to-day lives. One carer described plans to move to a bungalow to allow him and his wife to share a bedroom again for the first time in over 10 years. Carers also made activities, socialising and holidays possible by building in resting time before and afterwards:

You have to plan out things, um, so that she can try and cope with, you know, maybe having a friend round, um, for a short time then she has to rest up even more beforehand and rest up afterwards. (Helen)

Careful planning also meant carers didn’t have to lose out on activities that were important to them. For Liz, this amounted to a form of self-care that allowed her to protect herself from the disappointment of cancelling activities:

I think you know, going back to this self-care, I think what I need to do more of is make sure we plan things but there’s I suppose, have things that have got more flexibility in them. (Liz)

Using a problem-solving style of coping therefore helped carers to live day-to-day with the unpredictability of symptoms and also to achieve some of the things that were important to them, while helping the care-recipient to live as normal a life as possible.

Information and support seeking

Carers felt a strong need for support and information about ME/CFS. This was explored under two related themes: the perceived lack of formal support from healthcare services, and seeking support and information online.

Lack of professional support

Most carers were frustrated by a perceived lack of professional knowledge and support. Although some carers reported that doctors had been helpful, they had all encountered ignorance and scepticism about ME/CFS. It was common to see GPs and other health professionals who they felt knew less about ME/CFS than they did:

Some of the occupational health nurses were, ‘oh you know, you’ve just got to… you’ve got to beat it out yourself.’… and it’s like, ‘really?’ (Andrew)

Even back then, we were aware that we felt that we knew more about the disease than the doctor did. (Liz)

There’s no… as I said, you’re just left at home, dealing with it, cos there’s nowhere out there to help her. She’s just got to get on with it really. (Helen)

In the last extract, Helen appears bewildered that they had found themselves facing the illness alone. She conveys her sense of abandonment when she says ‘left at home’, as though they have been forgotten by healthcare services. Marcus echoed this by saying they had been ‘let down badly by the medical profession’.

Carers reported some positive experiences using specialist services. Three carers reported that specialist ME/CFS clinics had provided positive support and helped the care-recipient cope with symptoms. However, travelling to clinics that were not local was difficult and impractical for some:

He decided not to go because it was more for somebody if you’re not coping very well with the disease, um, and the problem is he would have to travel to go there so it wasn’t that local, so we kind of weighed up the benefits of going. (Liz)

Carers voiced a need for specific formal support for ME/CFS carers, as many had been unable to find anything useful. Andrew reported that information for carers from their specialist ME/CFS clinic was too broad as it tried to cover the whole spectrum of severity of ME/CFS. Scott described his need for both practical and emotional support. He recognised that he was struggling with his own mental health but did not know who to ask after an initial visit to his GP did not help ( ‘I pretty much got told, ‘why are you coming to me?’’).

Online ME/CFS community

Almost all carers used online ME/CFS forums to find out more about ME/CFS and how others manage it. They read information online in the hope of learning about effective treatments or cures. In the absence of definite answers from healthcare services they used the experiences and opinions of others to help with their own sense-making about ME/CFS. Online self-education and information seeking was consistently described as an important basis for hope:

When you use some of these forums and do things, that there are people that do get better, you know, everybody’s different. (Helen)

I follow stuff on the ME Association because again, and as part of what we’re talking about, there is very little for carers, but I want to try and understand, obviously, what Samantha’s going through, what some of the difficulties are that she potentially could experience. (Andrew)

Carers found it comforting to ask questions and share experiences with the online ME community, which helped them feel they were not alone in dealing with the difficulties of the condition. Although some carers reported that care-recipients used face-to-face support groups carers themselves did not – these were not convenient for those carers who were working. Some carers felt there was a need for specific online support groups for ME/CFS carers and a couple of carers were thinking of setting up their own informal online support groups locally.

Thus, carers searched for their own information and support when they felt professional help and advice was lacking. Sharing experiences online provided a coping resource and social support for carers isolated by the social stigma of ME/CFS who find it difficult to attend support groups in person.

Discussion

This study explored the lived experience of caring in ME/CFS and found that the caring role disrupted multiple areas of carers’ lives, including identities and relationships, and had a negative impact on most carers’ quality of life. Significant emotional distress was caused by others questioning the legitimacy of the condition. ME/CFS is a contested illness, and even after NICE published practice guidelines on its treatment and management there has remained scepticism among some healthcare professionals that it is a distinct condition (Broughton et al., 2017; Horton et al., 2010). The distress experienced by people with ME/CFS when the legitimacy of their illness is questioned has been well reported (Anderson et al., 2012; Dickson et al., 2007; Drachler et al., 2009), but this study found that carers also experience this distress acutely. In this study, carers had the double burden of supporting their loved one through a debilitating illness while being forced to defend its legitimacy to others, including GPs, employers, work colleagues, friends and family. The stigmatisation of ME/CFS could therefore be a significant contributor to the higher levels of distress and poorer well-being reported in ME/CFS carers compared with carers in other chronic conditions and the general population (Harris et al., 2016; Nacul et al., 2011).

Carer identity is another key theme that has not been well explored in the ME/CFS literature, which has explored identity change primarily from patients’ perspectives (Anderson et al., 2012; Dickson et al., 2007; Larun and Malterud, 2007). Many carers struggled to adjust to shifting roles within their households or other areas of their lives. In particular, those carers reporting the highest care burdens seemed to struggle to recognise their own lives. Difficulties in adapting to shifting roles was also reported by Mihelicova et al. (2015), who reported that parents of children with severe ME/CFS struggled to reconcile an identity transformation from a parental role to a multifaceted role as carer, educator and advocate (Mihelicova et al., 2015). Carers in cancer and COPD have also reported a loss of self-identity, leading to a sense of isolation that increased their emotional burden (Simpson et al., 2010; Ugalde et al., 2012). Identity change may be a contributing factor to the isolation reported by some carers in this study, and this is likely to be compounded by the reduced social support reported by carers. Future longitudinal studies with a focus on how identity change affects ME/CFS carers’ well-being could help to inform carer interventions.

Acceptance was a central theme because it was seen by all carers as important for day-to-day coping. Acceptance is described as an ‘adaptive’ emotion-focused coping strategy because it is effective at minimising a stressor (Lazarus and Folkman, 1987). Effective coping is thought to involve both problem-focused and emotion-focused strategies (Lazarus and Folkman, 1987) but active problem-solving is often associated with better psychological outcomes than avoidant coping (Ogden, 2012). Williams et al. (2014) noted that acceptance enabled carers to take proactive approaches to caring demands; therefore, acceptance may facilitate problem-solving coping. It has been suggested that carers adopt acceptance when they perceive that they cannot improve the situation but want to move on rather than dwell on losses (Ax et al., 2002; Williams et al., 2014). In line with this, many carers reported a resigned sense of acceptance; however, all carers had also adopted an active problem-solving approach to help them achieve things that were important to them or to the care-recipient, and were strongly motivated to explore new information or potential treatments in ME/CFS to improve their current situation.

There was no clear relationship between length of caring time and acceptance. Ax et al.’s longitudinal study reported that carers reached acceptance over time, but the authors reported that carers had adjusted to ME/CFS relatively easily. This may have been in part because care-recipients were not severely disabled, and the authors postulated that acceptance was easier when caring had less impact on carers’ lives. In this study too, the carers who described difficulties in accepting ME/CFS and showed the most severe distress were those with the highest perceived caring burden or whose care-recipient had disabling or deteriorating symptoms. For example, Liz was struggling to adjust to a more intensive ‘carer’ role as her husband’s symptoms worsened, while Scott felt overwhelmed by working full-time, raising a young family and caring for his wife.

It was clear in these findings that caring affected spousal relationships. Relational identity conflict has been reported as distressing for spousal carers in COPD, fibromyalgia and multiple sclerosis (Simpson et al., 2010; Soderberg et al., 2003; Topcu et al., 2016). Horrocks and Ward (2015) observed that ME/CFS causes role changes in both partners and forces a realignment of relationships. In some studies role changes have strained relationships and resulted in a loss of intimacy. In this study, shifting roles within the household caused tensions between couples. Some had found new ways of being together despite ME/CFS and appeared to still find their relationships rewarding and mutually supportive. Accepting changes to their relationship helped them to still look forward to their future together. However, others were struggling to navigate changes to their relationship, with some carers finding it difficult to manage a dual role as both ‘spouse’ and ‘carer’. It is important in IPA research to explore ways in which participants’ experiences both converge and diverge within themes (Smith, 2011) and it seemed that carers were at different stages in relation to acceptance. Acceptance has been described as a long and difficult journey for ME/CFS patients, but it makes life easier once reached (Edwards et al., 2007; Van Damme et al., 2006). Part of this involves ‘letting go’ of old identities and accepting new selves (Arroll and Howard, 2013; Dickson et al., 2008). It’s possible that a similar process of letting go is just as important for carers and spousal relationships. In light of this, it would be helpful to investigate further in future how carers experience acceptance and positive relational growth to more effectively support couples living with ME/CFS.

Carers were not asked explicitly about their quality of life because this was not a specified aim of the study, but several acknowledged concerns about their mental or physical health and may have had reduced quality of life across emotional and social domains. This would be a useful topic to focus on in future qualitative studies. A recent study proposed a conceptual quality of life model for carers in multiple sclerosis, based on themes drawn from a qualitative meta-synthesis (Topcu et al., 2016). Carers’ coping resources, motivations for caring and support experiences mediated effects from ‘stressors’ of caring and determined carers’ quality of life. Future research could apply a similar model to investigate factors influencing ME/CFS carers’ quality of life; future qualitative studies focusing on quality of life would inform this.

Implications for practice

Carers had unmet needs for emotional, psychological and practical support. Although carers’ needs have been pinpointed as a public health concern (Department of Health, 2014), this study suggests the delegitimisation surrounding ME/CFS is a particular source of distress for carers and means they have a more acute need for validation than carers of people with more visible health conditions. Recognising both the important role that carers play in providing informal care for loved ones with ME/CFS, and the demands they face in this role, could help to validate their caring burden and improve their well-being.

Although NICE emphasises the role of primary care in supporting people with ME/CFS and their carers, some carers who felt they were not coping well did not know where to turn for help, especially as their GPs were not always helpful. It has also been reported that many GPs do not record ME/CFS carers on carers’ registers (Hannon et al., 2012). GPs have reported struggling to define their role in managing ME/CFS and believe the condition should be managed by specialist services (Bayliss et al., 2016; Chew-Graham et al., 2010). Although specialist care has an important and beneficial role in treatment and support, people with ME/CFS have reported barriers to accessing specialist clinics (Broughton et al., 2017) and this was echoed by carers in this study. Good quality information and support in primary care could play a key role in dispelling social stigma and providing empathy and legitimacy to both patients and carers (Broughton et al., 2017). It is therefore important for GPs and other primary care staff to identify ME/CFS carers, assess their needs and give them good information, support and advice, including offering referral to other services if needed, such as mental health and social services. All carers have a legal right to an assessment of their own support needs under the Care Act 2014, although pressure on social care budgets has meant long waits for assessments and many carers not receiving enough support, particularly respite breaks (Carers UK, 2018).

Carers would also benefit from education and training designed specifically for them, which includes accurate information about the condition and strategies to tackle social stigma. This could include advice and training on explaining the condition to families and friends and how to target misconceptions, such as that ME/CFS is psychological in origin, or can be overcome through exercise. Wherever practical, information aimed at ME/CFS carers needs to be targeted to different illness severities so that carers recognise it as meeting their needs. Other potentially useful interventions could be coping skills training, or peer support programmes, in which carers receive mentoring and support from more experienced ME/CFS carers, which have proved helpful to dementia carers (Greenwood et al., 2013). Carers in this study preferred seeking information and support online, so online interventions might prove most helpful to ME/CFS carers.

Limitations

One possible limitation was that carers self-selected and were recruited online, introducing bias towards carers who seek information and support online. Acceptance of the carer role and identity were relatively high – perhaps because participants responded to an advertisement for ‘carers’; this was partially offset by some carers being alerted to the advertisement by care-recipients. It has also been suggested that recruiting via support groups may introduce bias towards carers who have adjusted to ME/CFS, compared with recruiting carers of newly diagnosed patients, for example, from specialist clinics (Harris et al., 2016). The format of data collection could also have held limitations. In conducting interviews by telephone or skype rather than face to face, the first author could have missed visual cues that might have assisted interpretation of meaning or emotions. However, although bias against telephone interviewing has been reported in qualitative research there is little formal evidence to suggest data collected by telephone is less rich in quality than from face-to-face interviews (Novick, 2008). As well as being more convenient for carers, it may also have allowed them to talk more freely in a less confrontational format.

While this study has added to the knowledge base about caring experiences in ME/CFS, caution is always recommended in generalising the findings of IPA studies, in which the core purpose is to explore individual experiences (Smith et al., 2009). In this study, recruiting a more homogeneous sample would have allowed more in-depth analysis of a particular subgroup but time constraints during recruitment led to heterogeneity within the sample in the length of caring time, relationship to the care-recipient and severity of symptoms. Focusing on spousal or parental carers, carers of people with severe ME/CFS, or either long-term or more recent carers in future studies could enable more specific conclusions to be drawn about particular groups. Another potentially useful line of research would be exploring gender differences in caring since it has been reported that male and female carers experience the role differently (Sugiura et al., 2009).

Conclusion

This study extends our understanding of caring experiences in ME/CFS and emphasises the importance of improving support and education for carers, tailored to illness severity. Caring for a loved one with ME/CFS can be distressing and disruptive, particularly when symptoms are severe and the perceived caring burden is high. Accepting their caring role and the new identities emerging from it seems to be an important coping mechanism for carers. In-depth focus on this in future would help to inform interventions to help carers manage their care burden and improve their well-being. GPs need to recognise the crucial role that carers have in ME/CFS and address their health and support needs.

Footnotes

Appendix 1 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) received no financial support for the research, authorship and/or publication of this article.

ORCID iD

Sarah Catchpole

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