Bodies in lockdown: Young women’s narratives of falling severely ill with ME/CFS during childhood and adolescence

Abstract

Thirteen women (16–30 years) storied their experiences about the process of falling severely ill with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome during childhood and adolescence. We performed a narrative analysis informed by phenomenology which yielded three central themes: The active and meaningful life I used to live; gradually developing unhomeliness and feeling pushed toward the edge; and left abandoned on the sidelines. Out of the incomprehensible and unpredictable emerges an understanding of the scale of their ordeal, along with advice that may have made it worse. This portrays a gradual developing uncertain, unhomely life situation with no outlooks for future recovery.

In this article we present findings on how young women experience Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), during childhood, adolescence and early adulthood.

ME/CFS is a complex and serious long-term illness characterized by overwhelming fatigue and post-exertional malaise (PEM) (Rowe et al., 2017). The illness may cause substantial loss of physical and cognitive functions. Diagnosis is based on the person’s self-reported symptoms, or symptoms as reported by parents, and by excluding other diseases or causes of fatigue (Fukuda et al., 1994). To date there is no objective clinical test to verify the illness, nor is there any international consensus regarding diagnostic criteria for ME/CFS. A variety of clinical yardsticks, including the Fukuda criteria, the Canadian Consensus Criteria (CCC), the International Consensus Criteria (ICC), and the Oxford criteria are in common use (Strand et al., 2019).

Diagnosis in children and adolescents is often delayed because of the complexity of CFS and the existence of diverse diagnostic criteria and clinical practices (Clayton, 2015; Rowe et al., 2017). Individuals risk ending up with a different diagnosis, and this delay in diagnosis can prevent them from receiving appropriate health care (Gimeno Torrent, 2022; Webb et al., 2011).

According to some researchers, the prevalence of ME/CFS among children and adolescents is somewhere between 0.1% and 0.55% (Lim et al., 2020; Nijhof et al., 2011; Rimes et al., 2007). In the case of young children there appears to be no great differentiation on the basis of sex (Knight et al., 2013; Nijhof et al., 2011). However, for adolescents the risk of falling ill with ME/CFS has been put at between three and four times higher for girls than for boys (Rowe et al., 2017).

Among adults, ME/CFS is more prevalent among women across all categories, including age, ethnicity and socio-economic status (Jason et al., 2020; Ranjith, 2005).

Nevertheless, ME/CFS is still poorly understood and there are ongoing controversies about the nature, causes and treatment of the illness (Groven & Dahl-Michelsen, 2019; Sharpe & Greco, 2019).

Our decision to focus on women derives from the much higher prevalence of ME/CFS among women and the lack of legitimacy attached to women suffering from this condition.

ME/CFS can have either a gradual or a sudden onset. Gradual onset is more common in younger children, with the condition developing over months or years (Rowe et al., 2017). Symptoms can vary in severity and can fluctuate from one day to the next (Rowe et al., 2017). Both children and adolescents may suffer an acute infection prior to falling ill with ME/CFS (Katz et al., 2009; Knight et al., 2013; Nijhof et al., 2011).

Studies involving adults with ME/CFS suggest that in addition to the health issues raised by the illness there are also considerable social costs. Individuals can find themselves cut off from day-to-day life and normal social relations, and thus feel isolated. The fact that ME/CFS receives so little social recognition and legitimization can also result in individuals blaming themselves for being ill (Gimeno Torrent, 2022). Some of these social consequences have been reported by children and adolescents with ME/CFS (Parslow et al., 2017), and it seems likely that social aspects are woven into their experience of becoming ill.

ME/CFS is poorly understood by both health professionals and the general population (Anderson et al., 2012; McManimen et al., 2019; Parslow et al., 2017), a state of affairs that seems linked to the lack of recognition of ME/CFS as a serious illness (Gimeno Torrent, 2022).

In her recent editorial in Health Care for Women International, Covan (2022) argues that it is precisely because ME/CFS primarily affects women that it has failed to receive the recognition and focus it deserves among medical researchers and professionals. For Covan (2022), women suffering from medically unexplained illnesses have throughout history found themselves “misunderstood, misdiagnosed, and mistreated”.

Unfortunately, this may also be the case for children and adolescents suffering from ME/CFS.

In the case of adolescents, scholars have documented their sense of being disbelieved and misunderstood by those around them, health professionals included (Fisher & Crawley, 2013; Jelbert et al., 2010; Njølstad et al., 2019; Winger et al., 2014). Further, living with this illness in adolescence can impede the ability of older children to maintain normal relationships with friends and family, resulting in an inescapable separation from the world of others (Njølstad et al., 2019; Parslow et al., 2015; Williams-Wilson, 2009; Winger et al., 2014).

Adolescents have described the experience of being ill with ME/CFS, including the way in which the exhausted body feels unfamiliar and incapable of “obeying” or recovering as before (Njølstad et al., 2019; Parslow et al., 2018; Winger et al., 2014). The emotional burden of living with ME/CFS puts children and adolescents at greater risk of developing anxiety and/or depression (Fisher & Crawley, 2013; Lievesley et al., 2014; Taylor et al., 2017).

In rare cases, children and adolescents fall severely ill with CFS, remaining bedridden for months or even years (Rowe et al., 2017). Thus far, however, there has been little research on the experiences of children and adolescents falling severely ill and spending years in bed isolated from society. Consequently, we have little insight into their everyday lives, psycho-social health and health needs (Loades et al., 2021; Strassheim et al., 2021). Overall, young people’s narratives of falling severely ill with CFS during childhood and adolescent remains a neglected area of research.

The narratives of young people who have recovered from ME/CFS would seem to be of particular value, given that children and adolescents who are ill often find it difficult to tell their story, resulting in fragmented or broken narratives (Bülow, 2008).

To bridge this gap in the literature, we conducted a narrative exploration of the experiences of young women who fell severely ill with ME/CFS during childhood or adolescence.

We invited 13 young women who were in recovery from ME/CFS after years of severe illness to tell us how they now made sense of their past experiences of gradually falling severely ill from ME/CFS. We thought that their perspectives would be especially valuable, since they were in a position to narrate coherent stories, rather than ones that might be chaotic and fragmented (as can be the case with the narratives of people still experiencing serious illness).

In this article, we explore the themes that emerged from our study, focusing on how bodily experiences and lived life are interwoven in the women’s narratives we address the following question:

What do young women who are in recovery from ME/CFS have to tell about their experience of falling severely ill during childhood and adolescence?

Theoretical framework and research approach

We framed our study in the theoretical perspectives of phenomenology, which we regard as enabling the application of a lifeworld perspective to the process and experience of falling ill. According to the phenomenological tradition, symptoms of illness (such as discomfort, tiredness, and fatigue) are understood as related to the lived body: the body as it appears to the person who is this body, not the body as it appears to others from outside (Merleau-Ponty, 1962). A person’s lived body is not an object among other things in the world but rather the person’s perspective on the world. An individual is conscious of the world through the medium of his or her body (Merleau-Ponty, 1962).

Heidegger (1953/2010) focuses on the everyday world of being and understanding, and the different modes of what it means to ‘be’. He uses the term “Dasein” to describe the “being-there” of human existence. “Being-there” means we are situated in the world and always inter-subjectively engaged in the world we inhabit. For Heidegger, “Understanding of being is itself a determination of being of dasein [Seinverständnis ist selbst eine Seinsbestimmtheit des Daseins] (Heidegger, 1953/2010, p.11). This means that we have an existential relation to our own existence in asking what it means to be (Heidegger, 2010). According to Heidegger, our relationship to the world should be viewed as the way we are in the world: our “worldliness”. Here, the world is not understood as an external thing, since our “worldliness” and “dasein” form a unity; there is no distinction between the objective (the world) and the subjective (ourselves as individuals). Human existence and understanding are therefore always a ‘being there’ in the sense of being-in-the-world (Heidegger, 2010). Hence, bodily experiences of falling ill cannot be separated from who the sufferers are and how they live and inhabit their situation.

In an interesting contribution to the phenomenology of falling ill, Svenaeus (2011) notes how illness obstructs the sick individual’s entire being-in-the-world and makes it unhomelike. Our bodies usually function without our being explicitly conscious of bodily actions or seeking to control them (Svenaeus, 2001a). The world as we know it is ours, but at the same time we cannot entirely control it or have knowledge about every aspect of it (Heidegger, 1953). For Svenaeus (2000), the body has an alien dimension to it, even in the absence of illness. When we fall ill, our bodily being appears to us in an unfamiliar way; we sense our bodies to be different and unlike our habitual, healthy way of being-in-the-world (Svenaeus, 2009).

To fall ill is to succumb to a gradual process of bodily alienation, both in respect of the individual lived body and of its relationship with the world (Svenaeus, 2001b, 2009). Falling ill always has a temporal dimension to it. Svenaeus (2011) suggests that the temporal structure of illness can be conceptualized as an alienation of past and future, a rupturing of an individual’s life in such a way that past and future appear in a new light. Falling ill imposes an unfamiliar way of being-in-the-world, one that simultaneously belongs to the person and does not (Svenaeus, 2011).

In order to explore such insights in the specific context of the lives of young women, we opted to employ a narrative methodological approach. We saw this as particularly relevant for studying human experiential processes, i.e., how people make sense of what happens to them over time. Storytelling is understood as a fundamental way for humans to make sense of their experiences (Polkinghorne, 1988). While constituting the past, narratives also offer individuals the opportunity to make meaning of past experiences and connect them to the present and the future (Riessman, 2008). Such meaning-making involves linking things together to form a coherent whole; one event follows another in a temporal way. We perceived the combination of a phenomenological theoretical perspective with a narrative approach as particularly apt for an exploration of the ways in which lived meanings evolve and change over time.

Falling ill with a severe condition can be viewed as a biographical disruption, one that disrupts the person’s expectations of continuity in life. In this situation, storytelling offers a way to make sense of events and develop continuity in one’s life experiences (Mattingly & Garro, 1994; Riessman, 2008). At the same time, storytelling is also nurtured by the individual’s specific cultural and historical context. When narrating, storytellers will call attention to different things according to who is listening or where narration is taking place. To this extent, the researcher can be considered a co-creator of the unfolding story. But while the story can be told in different ways, it always stays connected to experiences in life and the meaning the narrator ascribes to them (Mattingly, 1998; Riessman, 2008).

Method

Recruitment and participants

We went about selecting participants on the basis of clear inclusion criteria: participants were to be women aged between 16 and 30 years who had fallen ill with ME/CFS during childhood or adolescence but who had since fully recovered or perceived themselves to have made a significant recovery. In addition, all participants were to have been diagnosed with ME/CFS by a physician, to have been ill for more than a year, and to be able to speak, read and write Norwegian.

We recruited participants by placing an advertisement on two Norwegian websites, particularly concerned with health care for women and improving women’s rights in society. Those interested in participating contacted the first author by e-mail or phone. Candidates who met the inclusion criteria were then sent detailed information about the study, along with a consent letter.

A total of 17 women made contact, of whom four were excluded or dropped out. The 13 remaining participants lived in different parts of Norway, both urban and rural. At the time of being interviewed, all were engaged in full- or part-time education (at high school, college or university) or were working (full- or part-time). Six were married or living with a partner and one had children. All the women were from middle class homes, with both their parents working (the parent of one of the participants had taken sick leave at times to look after her when she had been ill). None of the participants was previously known to the first author. All participants were informed that they would be interviewed by a female pediatric nurse with long experience of clinical work with children and adolescents.

Narrative interviews

All interviews were conducted by the first author in May-September 2019. Dates and locations for interviews were decided in collaboration with participants. Interviews took place in participants’ homes, university settings or local libraries, according to participants’ convenience.

In order to capture the young women’s experiences of falling ill with ME/CFS, narrative interviews inspired by Riessman (2008) were conducted with each participant. Participants were asked to describe in their own words their lives prior to their falling ill; during their illness; and in the present day. Assured at the outset that there were no ‘right’ or ‘wrong’ stories or answers, participants were encouraged to speak freely.

The first author began each interview by posing a few open questions to help participants get started: “Can you tell me about your life prior to falling ill?” and “Can you tell me what it was like to experience falling ill?” Follow-up questions were sometimes asked to encourage participants to elaborate or clarify meanings. Narration often involved the young women jumping back and forth in time as they remembered specific events or experiences.

Interviews lasted between 60 and 150 minutes. Each was digitally audio-recorded and then transcribed verbatim by the first author shortly after the interview concluded. In addition, the first author wrote a short reflexive summary aimed at capturing non-verbal communications, facial expressions and the overall atmosphere of each interview in its immediate aftermath. These reports also formed part of the data for analysis.

Analysis

Our narrative analysis, inspired by phenomenology and in particular Svenaeus’s phenomenology of illness, drew on Riessman’s (2008) thematic and structural analysis. In order to achieve an overall impression of participants’ stories of falling ill, each interview was listened to several times and transcripts were read repeatedly.

For our thematic narrative analysis, we posed the following questions: What are the women telling us about their lives prior to falling ill? What are they telling us about falling ill and becoming seriously ill? We focused on the sequences of events or experiences that expressed a participant’s life before they became ill. We then examined the process of falling ill, including the onset and gradual worsening of symptoms on the path to severe illness.

Excerpted sequences were then coded and explored further. We sought to probe the structure of narratives, including the ways in which the sequences were presented in a temporal, causal order to create narrative coherence and meaning (Riessman, 2008). Certain common themes gradually became apparent: for example, participants described experiencing profound changes in their bodily-being-in-the-world when falling ill.

The emergence of common themes encouraged us to present our analysis in the form of a shared narrative, illustrated by excerpts from specific interviews to illustrate what was said in a temporal order. On this basis, a composite narrative about the process of falling ill was developed.

Ethics

The study was approved by Regional Committee for Medical and Health Research Ethics, Social Science Data Service and conducted in accordance with the Helsinki Declaration Act and the Health Research Act of Norway. The Service for Sensitive Data was used as required for collecting and storing sensitive data. Only the main supervisor and the first author have had access to the interviews and the transcribed material. Informed consent was given by the participants prior to each interview.

The interviewer was aware that, given the distrust and disbelief participants may have experienced from health professionals, they might feel vulnerable when relating their illness story to someone who was also a health professional. It was important for the interviewer to pay attention to the young women’s reactions and emotions when narrating their stories, so that the situation would not become unnecessarily burdensome for them.

Findings

Of the thirteen women participants, twelve told of falling ill when they were between 10 to 18 years old; the remaining participant had fallen ill at the age of 22 years. The women had experienced either a sudden or a gradual onset of illness, and the process of falling ill often comprised periods of remission and relapse. Most of the women had suffered an infection prior to falling ill. Some were aware of having an infection with mononucleosis prior to falling ill with ME/CFS, while others first got to know that they at some time point had had an Epstein-Barr virus (EBC) infection when diagnosed with ME/CFS.

Participants described their current memories of how they experienced falling ill. Looking back, they recounted the onset of illness by describing various kinds of infections they had contracted, which in retrospect they now saw as significant factors in why they became ill. All the women depicted becoming and being ill as a distressing and traumatic period in their life. For them, it was essential to try to make sense of why they had fallen ill. What had triggered their illness? What had happened before and during the process of either suddenly or gradually falling ill with ME/CFS?

Our presentation starts with participants’ descriptions of living a healthy life prior to illness. This is followed by accounts of experiencing the onset of unexplained bodily discomfort, which then gradually builds toward severe illness.

Despite nuances of difference between the women’s stories, their experiences of falling ill with ME/CFS can be understood and communicated as a composite narrative under the following themes: “The active and meaningful life I used to live”; “Gradually developing unhomeliness and being pushed toward the edge”; and “Left abandoned on the sidelines”.

In the excerpts from transcripts presented below, all participants appear under pseudonyms. Any quotation that might disclose a particular participant’s identity has been omitted. The symbol […] signifies that two identified sequences were found to be related, while three dots … indicate a pause in the narrative.

The active and meaningful life I used to live

When recalling the time before falling ill with ME/CFS, participants told of leading active lives, whether at school, in terms of leisure activities, or simply about hanging out with their friends. Bodily experiences did not feature in their narratives, aside from references to having a well-functioning body which enabled them to participate fully in whatever they enjoyed doing. Their embodied being was mostly familiar and gave them a sense of belongingness.

Here, Amalie describes her vigorous adolescence prior to suddenly falling ill:

I was kind of active… was part of a political organization and my friend was the leader so we sort of spent a lot of time there… I had long days in school… played an instrument so I practiced a lot, played in different bands… a lot going on… my week was kind of filled up!

For Mia, spending time with friends and taking part in different activities were important aspects of pre-illness life:

Well before I fell ill… it was in high school… I focused on my sport, and I was good at it! Sport was my safe place where I could be myself, be social and not worry about a thing. I think a lot of my self-esteem and self-worthiness were connected to being an athlete. […]

I did well in school (swallows) but it was difficult for me…it was a lot of… I was kind of bullied and left out in school…called things… I hated school because of that…

Despite her young age, Mia was an accomplished athlete, and this was an important part of her perception of herself. For other participants, too, hobbies contributed to their sense of belonging, safety and self-development.

As healthy beings, the young women had experienced life as mostly predictable and familiar, even if they also faced specific challenges. For Mia, being ‘good at’ sport shielded her from social exclusion and bullying at school. For Elisabeth, dance offered an opportunity to relax and ‘be myself’:

It was like four or five times a week… intense for a couple of hours… the best way to sort of… let your mind flow…and flow with the music…use your body… completely calm… Just have fun and dance…The social part of dancing was… I could be myself you know. I found it very difficult, becoming ill… I used to have so much energy… then not be a dancer. I spent years adjusting to it… accepting it.

In other women’s stories, too, performing a specific sport or activity was an essential part of their life and social being-in-the-world.

In their stories of life prior to falling ill, participants described having more or less no body-related concerns. Their bodily being was mostly familiar and to be trusted, and this contributed to their sense of belonging, safety, and self-development as they made the transition from childhood to adolescence. Being healthy was something they took for granted; the habitual body was mostly in the background of their attention, enabling them to enjoy life.

Gradually developing unhomeliness and feeling pushed toward the edge

Participants then moved on to recall the process of falling ill. Two forms of onset were described: sudden and gradual. While participants with sudden onset experienced it as happening without any warning, participants with gradual onset recalled how it started with an infection from which they had expected to recover. Whether their onset was sudden or gradual, falling ill involved remissions, relapses, and unpredictable fluctuations between better and worse days as the downward spiral continued.

The unpredictability of their situation now challenged the participants ‘habitual life. This is how Ines describes falling ill with Mononucleosis as a child:

I had this intense pain in my stomach… and problems eating…I remember feeling so tired…felt a little down… I never returned to school after Christmas and I was diagnosed with mononucleosis (trembling voice). But my body just continued […]

After a year, I got the diagnosis ME (CFS)… feeling exhausted, I had good days and bad days. For the first 3 years I had a teacher who gave me lessons at home, because everyone said I had to … But we should not have done it… it only made me worse. My experience would have been better if I had let go… I was so tired. I was able to spend short periods of time with my friends, but then… Others told me I would soon get better, but I just got worse… mm… I became very ill.

Ines here describes how her familiar, taken-for-granted body became more and more unfamiliar. She sank into exhaustion and pain and had difficulty functioning. Her failure to recover from Mononucleosis resulted in uncertainty, and it was a whole year before she received an explanation and a diagnosis. All the while, she was told by others to keep up her schoolwork and stay in contact with her friends. Ines’s experience of falling ill can be understood to have become unnecessary demanding due to others’ understanding or misunderstanding. She was told she would recover, but this did not happen.

The length of time before receiving a diagnosis emerged as a common element in the women’s narratives, as was advice to keep up their normal daily routines. As Kristin put it:

The weeks passed by and all I did was sleep… I was exhausted… tried to keep up with school… felt as if I had run a marathon when I woke up in the morning and then you are supposed to begin the day. You sort of take it for granted that when you wake up, you’ll feel refreshed, right? […].

I gradually lost friends because I was too exhausted to join them. In the end they would stop asking me to join them, knew I would not show up

Kristin experienced extreme exhaustion; even if she slept a lot, she never woke up feeling refreshed. Her body now became unfamiliar and intrusive. From her earlier life experiences, she expected to wake up refreshed, but this was no longer the case. Instead, Kristin felt as if she had “run a marathon”. This was a new, unhomelike being-the-world.

In her narration, Kristin also expressed ambivalence: despite sleeping much of the time and thereby taking care of her body, she also did her best to keep up her former social life. But having lost her habitual body, she found herself unable to do so. Eventually her friends stopped asking her out.

This creeping isolation surfaces in the accounts of other participants, all of whom are repeatedly advised to stay active. Complying with such advice and expectations now becomes a real struggle, as Camilla testifies:

Doctors told me I suffered from school phobia and that I was making everything up. My parents were told “the best medicine” was to push me to participate in school, so they did… But I was not a lazy child. I just… I dread going to school because I was so tired [……]

I remember dad drove me to school and I was not capable of getting out of the car because I was so tired… I just got worse… We kind of did the opposite of what we should have done… this was hard on my parents, they really did all they could to help me.

Here, her doctor seems to ignore Camilla’s experiences of her lived body. Applying a medical gaze, the doctor can detect no signs of disease and concludes that the patient herself is ‘the problem’: a lazy child. But Camilla refuses to accept this. She perceives herself as an exhausted, struggling person, one who is uncertain and scared about her body not obeying.

From the perspective of the present, Camilla knows that her parents regret having heeded what they now understand to have been wrong advice. But at the time, the fact that the doctor – the embodiment of professional authority – discounted Camilla’s own observations caused her parents to doubt the reality of their daughter’s exhaustion, illness and inability to behave as before.

Participants provided many examples of how they were disbelieved and distrusted by health professionals, including medical specialists with considerable authority in their field. In the absence of any biomedical evidence for their experiences, several of the participants found themselves “thrown around in the system”, both when undergoing diagnostic assessment and during treatment. Lisa describes it thus:

I was sent for a psychological evaluation and was put on antidepressants… Next thing a center for sleeping disorders and I had to fill out this questionnaire “Are you capable of normal activity?” and “Do you take pleasure in doing things like before”. I answered “No” because I was not capable of doing anything. The doctor took a quick look at my answers to the questionnaire and said, “You are depressed, and you are taking too many painkillers”. I was not depressed […]

I did not have the vocabulary to express what had been happening to me. When I feel exhausted, I tend to cry, and I found it so difficult to explain… I remember once, on National Day, I just lay on the sofa and cried because I was in so much pain. When you try to explain but no one listens or helps. Every day was pain and struggle, but I was not depressed… it was just… that I only became worse.

As professionals failed to find any biomedical explanations for her condition, Lisa was referred for a psychological evaluation. She was asked to answer a standardized questionnaire which did not address her lived situation. The medical conclusion that she was depressed made no sense to her, nor did she appreciate being told she was taking too many painkillers. Lacking the vocabulary to defend herself, Lisa could not take issue with the medical verdict. She felt abandoned and helpless.

The women narrated how their bodies became increasingly at the forefront of their attention. “I felt as if I had run a marathon” was how one participant described her struggle to keep up. The metaphor of the marathon conveys how exhausting life has become; the women must push themselves to complete even small tasks in order to live up to their own and others’ expectations. But their “new” bodily experiences were not recognized as meaningful and significant by medical professionals. Instead, they were advised to stay active, which in retrospect they recognize as wrong.

For participants, the gradual deterioration in their bodies represented a scary and unhomelike experience of being-in-the world. Pushed by others to keep their exhausted bodies functioning, they tried to comply. But this meant ignoring or suppressing what their own bodies were telling them. It was as if they had been pushed to the sidelines - of their body and of their life.

Left abandoned on the sidelines

Looking back, the young women portrayed their bodies as becoming more and more unfamiliar, uncanny, and unrecognizable. Eventually they experienced their bodies as so profoundly fragile that they seemed to be approaching an existential limit. At this point, the women were no longer able to take care of themselves. As narrated by Ines:

Everything about me became so fragile, could not tolerate light or sound…I could not be among my friends… then I stopped walking because… I did not have a chance. Maybe I should have stopped earlier… My parents lifted me off my bed and back again… later I lay on a mattress on the floor in the dark: it was the only way… My legs were so heavy, as if they were being pushed to the ground… and someone had laid rocks upon them (swallows)…

Then I was not able to chew so mum tried to feed me with soup… I just could not do it… Could not move my tongue…as if it was too thin, you see… could not talk…so hard… It just got worse and I ended up in hospital, I received a nasogastric tube for nutrition, wore diapers because… (swallows)… I left the hospital… home to my mattress in a dark, quiet room by myself. [……] Not much left of the life I used to live. Looking back, all those years and all I missed… I kind of wished I had not lost my childhood and adolescence to ME (CFS).

Like several other participants, Ines described how her fragile body stopped obeying her and how the presence of others became unbearable. She described feeling as if she were no longer in control of her body; she experienced her body forcing her to the ground and restricting her ability to move. Should she have avoided pushing her exhausted, fragile body earlier? She then told of her dependence on others in order to eat and fulfill her primary needs for staying alive. When her normal, taken-for-granted body stopped working, Ines was reduced to lying on her mattress: a cruel situation which went on for several years. Her family protected her from all stimuli, it was necessary for her to survive at the time. This was a lonely and suffering situation and nothing anyone choose for themselves. Looking back, she saw this period as the loss of her childhood and adolescence, one which deprived her of all possibilities of engagement as a youngster.

Elisabeth provided a powerful description of how her body stopped functioning:

It took a while before my body fell apart… but I just got more exhausted… in time my body just stopped, as if “it’s enough”. As if I had hit a wall… I got a period of “blackout” and slept for 24 hours in a dark room. Lost my appetite, lost weight, the need to go to the bathroom… I lost it all… and could not do anything about it… just constantly exhausted. The “blackout” came without warning and that was the worst part. All of a sudden, nothing “firing” in my body – you are not thinking or dreaming… just “Boom!” … As if the body were shutting down…

Elisabeth describes how she hit the wall and experienced terrifying episodes of “blackout”. Losing her appetite along with the need to go to the toilet, she seemed to enter another state of existence. In her description, she likens her body to a machine: one which falls apart, fails to fire up, or simply shuts down (“boom”). This “blackout” can be compared to a kind of bodily “lockdown”.

Using different words, Kristin narrated a similar experience:

I did not recognize myself… looked like a ghost… I did not feel that my head belonged to my body… I was kind of trapped in my own body… as if I could not enter the body… I just felt as if… this body is not mine… everything I felt, and thought was somehow wrong…and I could not help it… it just happened… I did get a bit anxious… and I could not talk… My body felt so heavy. It is difficult to explain…it was so difficult to be in the situation and I do not know what to compare it with… I really did all I could, but nothing helped… so hard… (swallows) a living hell…

Kristin narrated feeling trapped by but also separated from her body, which no longer seemed to belong to her. Describing herself as resembling “a ghost”, she felt unable to reconnect with her body, which seemed in “lockdown”.

Discussion

Our findings suggest that the experience of falling ill with ME/CFS can be understood and communicated as a shared narrative organized chronologically on the basis of three storylines. The first storyline, “The active and meaningful life I used to live”, describes the time before participants fell ill, when they experienced their bodies in habitual, taken-for-granted ways. The second storyline, “Gradually developing unhomeliness and being pushed toward the edge”, illuminates the onset of illness and the constant deterioration of the body, resulting in alienation from the body and from life as it was lived before. Finally, the storyline “Left abandoned on the sidelines” tells of participants’ entrapment in severe illness and the shutting down of their lives.

Viewed through the lens of phenomenological theory, falling ill with ME/CFS emerges as a gradual process of falling victim to alienation, dys-appearance of the body, and a sense of unhomelike being-in-the-world.

The first storyline, “The active and meaningful life I used to live”, underscores the familiarity and trustworthiness of participant’s bodies prior to the onset of illness. Writing about the habitual body, Merleau-Ponty notes that “We say that the body has understood and habit has been cultivated when it has absorbed a new meaning and assimilated a fresh core of significance” (Merleau-Ponty, 1962, p. 146). In line with this, the women’s narratives illustrate how their bodies were mostly taken for granted and in the background of their attention, as is usually the case among healthy people. Participants lived with ongoing tacit certainty about their bodily ability in a familiar, manageable world (Carel, 2016). The body we live, have, and usually know is our habitual body. But when we fall ill, all this may change.

The second narrative, “Gradually developing unhomeliness and being pushed toward the edge”, illustrates how participants became more and more aware of their illness. Although the severity of illness fluctuates, these fluctuations are unpredictable, and over time there is a downward spiral of becoming worse. Participants’ being-in-the-world gradually becomes less and less familiar. Despite this, the women, being just children or adolescents at the time, seek to maintain an ordinary life and normal activities as per the advice they receive from physicians and other people around them. At the same time, the process of falling ill is experienced as an alternation of feelings of ‘homelikeness’ and of feeling more and more ‘unhomelike’ being in the world (Svenaeus, 2011). However, this understanding is not acknowledged by others, who tend to disregard participants’ lived experiences. Instead of being helped to understand the meaning of their pain and exhaustion, participants are told to ignore their unfamiliar body. They now try to suppress what their bodies, now at the forefront of their attention, are telling them. They live in an unfamiliar world of pain and intense exhaustion: what Leder (1990) describes as a bodily dys-appearance.

During illness, the dys-appearing body directs attention to the body itself, thereby obstructing and disabling an individual’s engagement with others and the world. In its latter stages, this bodily dys-appearance becomes so severe as to compel participants to give up. Left abandoned on the sidelines, they become completely dependent on parents or other caregivers.

Becoming and being ill constitute a special form of unhomelike being. The subjective and inter-subjective meaning structure of the body-subject undergoes profound change, and the understanding of the world as always relational and interconnected becomes disrupted (Svenaeus, 2011). Unhomeliness changes the openness of the self to the world, and this change in embodiment leads to the experience of the otherness of the body. In our study, the women spoke of a sense of alienation from their bodies while at the same time recognizing that these bodies were indeed their own.

Given the difficulty of describing unfamiliar experiences, participants turned to metaphor, including that of running a marathon. This metaphor conveys not just the struggle involved in keeping up activities but also the need for time to rest: after all, it is wrong to push oneself after having run a marathon. When the body resists, one starts to pay attention to it; the body becomes an object for inspection. Such objectification of the body may lead on to alienation: the experience of the body as a thing outside oneself, as something other than oneself. In illness, the otherness of the body can present in uncanny and merciless ways (Svenaeus, 2000). In the case of ME/CFS, living with the disease has been likened to having someone else in control of one’s body (Njølstad et al., 2019).

Falling ill is an embodied, inter-subjective experience, one which cannot be separated from an individual’s specific world (Heidegger, 1953/2010). In a world shared with others, falling ill with a condition for which medical professionals have found no biomarker seems to be deeply problematic. Along with not being understood or listened to, the patient is likely to feel mistrusted. When medical evidence for an illness is scanty or non-existent, professionals are unlikely to recognize patients’ personal experiences and bodily knowledge (Dumit, 2006; Hydén & Sachs, 1998; Nettleton, 2006). There will be a mismatch between how the patient understands herself and her situation and how professionals and others understand them. This discrepancy in understanding has been previously documented by researchers in both children/adolescents (Parslow et al., 2017) and adults (Anderson et al., 2012; Åsbring & Närvänen, 2003; Dickson et al., 2007; McManimen et al., 2019; Gimeno Torrent, 2022). The present study expands such insights by revealing how the situation seems to be made worse when young patients are told simply to ignore unexplained pain and fatigue.

Health professionals may remain blind to the patient’s gradual alienation from her body, even as she seeks to suppress this strange body and keep going – not simply to comply with medical instructions but also to resist her own social dys-appearance (Slatman, 2014). Given a situation in which the individual is not even seen or recognized as being ill, the best thing to do is struggle on, ignoring what the body is asking for. Such a process may have reinforced participants’ way of objectifying the body and therefore the alienation involved in falling severely ill.

Researchers have suggested that situations where the existence of illness has come under question or doubt may lead patients to doubt the reality of their illness (Winger et al., 2014).

Lack of understanding on the part of others may accelerate the process of bodily alienation, prompting patients to question their own experience. The uncertainty can make a person devalue her experiences and blame herself for becoming ill in the first place. She may turn to explanations to account for her becoming ill (Gimeno Torrent, 2022). Along with women, children and adolescents suffering from medically unexplained illnesses run the risk of being misunderstood and misdiagnosed (Covan, 2022). This can lead to an unfortunate delay in diagnosis and the provision of appropriate care (Webb et al., 2011).

When we fall severely ill, we experience a sense of alienation from our customary ‘homelike’ bodily being. Our being now becomes ‘unhomelike’ (Svenaeus, 2001b). This theoretical understanding connects with our third storyline, “Left abandoned on the sidelines”, in which participants describe the disintegration of their fragile bodies toward an alien ghost-like state. They have become separated from their body and their life world, and now even the presence of others becomes unbearable.

The phrase “looked like a ghost” applied by a person in the present paper, becomes a way to explain the dramatic, alien experience of falling ill with an unexplainable illness. A ghost refers to a pale, non-existing person, one who has left our world and who, while invisible to self and others, is at the same time visible to self and others. Using the metaphor “ghost” can be understood as the self-experience of existing – but simultaneously separated from the world. The word conveys the sense that “I have left the world of others, as the person I used to be”. It suggests that as a result of falling ill one has lost one’s belongingness and self-perception. A kind of existential breakdown, understood as a “lockdown” of the life one used to live, has taken place. In a similar vein, the experience of ME/CFS as a kind of “lockdown” has been metaphorically described as “a social death” and a “death in life” to convey an inescapable separation from a world shared with others (Gimeno Torrent, 2022).

Taken together, the women’s narratives reveal the unbearable, brutal consequences of falling severely ill. The very process of ‘being’ now becomes frightening and intrusive. Insecurity, worry and anxiety loom large. It becomes impossible to connect to one’s permanently alienated body and ‘unhomelike’ being in the world. The fragile body edges toward an alien, ghost-like state, toward a lockdown of body and life.

There is a profound contrast between this overwhelming perception and the views of health professionals who discount the disease or minimize its impact. The failure to listen to what the patient has to say, including what makes them feel better or worse, intensifies the patient’s sense of helplessness, of being sidelined. The patient experiences a gradual detachment from their now fragile body; there seems no possibility of reconnecting body and self.

The French philosopher and feminist, Simone de Beauvoir can contribute to our way of understanding the participants’ experience of unhomeliness when falling severely ill. Humans are born free and not shaped by nature, but it is up to the person, her- or himself to realize this freedom (de Beauvoir, 2000). However, given that women’s bodies are different than men’s their lived experiences are likely to be experienced as different (de Beauvoir, 2000). At the same time, de Beauvoir seeks to problematize our traditional understanding of women as subordinate men. In particular, she argues that women have a responsibility to transcend themselves. Transcending oneself entails asserting oneself giving priority to one’s own needs and desires. De Beauvoir also introduces the term ‘immanence’ to explain why some women and girls tend to focus on pleasing other’s needs and desires before asserting their own. This is risky, according to de Beauvoir, because women in immanence might end up passive, feeling alienated and lost, a victim of other individuals’ recommendations and desires. This process of alienation entails embodying traditional norms of womanhood, so that she will never be free (de Beauvoir, 2000). The tendency of young girls and women to suppress their own bodies by trying to live up to the expectations of others, despite falling severely ill, might be interpreted as a kind of (bodily) immanence. In an ongoing process of suppressing their own needs and bodily signs, they get more and more alienated from themselves (and their bodies). In addition, they alienate themselves from friends and from the ordinary life of children, teenagers and young women. Their exhaustion constitutes the absolute opposite of the Western ideal of the young female: energetic, strong and socially engaged. As they become increasingly ill, the girls strive to do as they are told, suppressing their bodies and living up to the expectations of others. But finally, they have to give in. Forced by their condition to withdraw from school, all social life and normal youthful activity, they fail in every aspect of being a girl in the process of becoming woman. In such a situation, it is difficult to break away from cultural and social boundaries, and just be allowed to fall ill. Hence, understanding the immanent body’s “shutting down” or going into “lockdown” during illness is to see it as a strategy by which the body protects itself, whether from itself or from external influences (or both). After all, a body that is shut down is no longer susceptible to being pressured into anything. It must be allowed to be at peace, be taken care of - and just be.

Strengths and limitations

For this study, our participants were young women who were in recovery or who had fully recovered from ME/CFS. We made this choice in order to gain insights from narratives which, we judged, would have greater coherence than accounts from those still struggling with serious illness.

Some important criteria have been identified toward enhancing the trustworthiness of narrative analysis (Riessman, 2008). In this study, the details of the interview procedure are made clear, together with the relationship between the participants and the first author. While the professional status (nursing) of the first author may have had some impact on how participants communicated their stories, to a large extent the women used non-medical terminology and were able to provide rich descriptions of their experiences.

In an effort to strengthen the transparency of the study, we made a point of relating our work to previous research on ME/CFS. We have striven to describe our theoretical framework in detail, to present our analysis and findings in a comprehensible way, and to connect with theory at every stage. As the authors of this research, we have found that our different professional backgrounds and experiences enabled us to discuss and question each other’s preunderstandings and interpretations. Taken together, these factors strengthen the trustworthiness of our research and findings.

With respect to transferability, it bears emphasis that our young women participants were a relatively heterogeneous group, drawn from different parts of Norway and with varying family backgrounds and educational levels. In addition, a narrative study can never aspire to cover all circulating narratives. However, the stories that emerged from our young women participants had many common features, underlining their relevance for a wider understanding of such experiences.

Clinical implications

Our findings highlight how advice from health professionals pushed severely ill young people to continue with their everyday lives even when they were experiencing incomprehensible bodily changes. Various factors, including youth, lack of comprehension of what was happening to their bodies, and lack of vocabulary to express what was happening to them, made it difficult for young people to stand up for themselves and resist professional advice. This underlines the need for health professionals and others working with children and adolescents to listen to what young patients have to say – and strive to make sense of their specific experiences. In the absence of this, young people who fall ill with ME/CFS may be denied important aspects of their transition from childhood and adolescence to adulthood. It is also possible that medical advice to stay active may actually be contributing to the severity of illness suffered by such young people. The specific health needs of children and adolescents falling severely ill are proposed for further research.

Concluding remarks

Through the prism of three storylines, this study offers insights into the experiences of a small group of young women, all of whom fell severely ill with ME/CFS during childhood or adolescence. Told from the vantage point of total or near-complete recovery, the stories evoke the healthy lives enjoyed by the women prior to falling ill, their subsequent traumatic struggles with inexplicable bodily changes and disrupted social relationships. Out of the incomprehensible and unpredictable emerges an understanding of the scale of their ordeal, along with the factors that may have made it worse.

Acknowledgments

The authors would like to thank the young women for sharing their experiences and reflections about falling ill with CFS/ME. We would also like to thank Ingrid Bergliot Helland and Berit Widerøe Njålstad for their contribution as health professionals in the field who acted as a resource group for the project. Additionally, we would like to thank Madhi Bareksten for her contribution to user involvement in the study. Last and very importantly, we would like to thank Norwegian Women’s Public Health Associations for contributing to user involvment in this study.

Funding

The study is funded by the Dam Foundation (grant number: 2019/FO244604).

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.