Parenting in a Pandemic With Multiple Sclerosis

Abstract

The present research used the interview-diary-interview method to obtain qualitative data from eight mothers in the UK with multiple sclerosis (MS) about their experiences of parenting during the Covid pandemic. The findings showed that the pandemic had been a significant factor in exacerbating existing experiences of parenting with MS. Participants in the study became more aware of their MS during the pandemic, due to losing support networks, and the government assignment of risk categories. This increased awareness of their MS combined with ideologies of ‘good mothering’ led the mothers to engage in actions to mitigate the impact of their MS (perceived or actual) on their children. Overall, the findings showed that participants were required to engage in a complex balancing of social, psychological, and biological factors, both within private and public spheres.

Introduction

The Covid-19 pandemic has significantly impacted family lives, in complicated and far-reaching ways, and the extent to which it has affected families is yet to be fully understood. Research suggests the pandemic has exacerbated existing gender inequality (Carli, 2020; Kantamneni, 2020; Yavorsky et al., 2021). Covid-19 has created new groups of people with disability, as the virus has resulted in 1.8 million people – 2.8% of the total population in the UK (Office for National Statistics (ONS), 2022) – living with ‘long Covid’ (National Health Service (NHS), 2021; ONS, 2022). Furthermore, disabled people (Sharif et al., 2022) are disproportionality affected by the social, economic, and health impacts of the pandemic (Hillgrove et al., 2021; Jesus et al., 2021). Therefore, the Covid-19 pandemic and the associated consequences on public health highlight the ongoing need for scholarship to engage with disability using the framework of structural determinants of health.

Greco et al. (2021: 1) argued that social scientific research can assist in understanding the ‘ongoing, situated and lived impact of the pandemic, as well as fully underline its socially stratified consequences’. The present study examines the experiences of mothers with MS during the Covid-19 pandemic and contributes to a medical sociological understanding of embodied perspectives of disability. MS is a chronic neurological condition. There are two main types of MS: progressive and relapse remitting (NHS, 2022). Between 80% and 90% of people with multiple sclerosis (MS) begin with relapse-remitting (RRMS) (NHS, 2022) meaning they have a sudden onset of new symptoms followed by periods of full or partial recovery. Secondary progressive multiple sclerosis (SPMS) is a stage of MS that typically occurs 10 to 25 years after onset of RRMS. Primary progressive MS sees a progression of disease from initial onset and relapses are absent. This study involved participants with SPMS and RRMS. Symptoms of MS vary but can commonly include problems with vision, cognition and balance; difficulty walking, neuropathic pain, muscle stiffness and weakness, fatigue and bladder and bowel problems (MS Trust, 2024). People with MS can experience fluctuations in their symptoms, or ‘episodic disability’ (Vick, 2013), meaning people with MS can occupy the liminal space between health and illness, and dis/ability.

Risk during the Covid-19 pandemic

During the Covid-19 pandemic, health risks were foregrounded in public consciousness, leading to increased anxiety stemming from the uncertainty of a novel and unknown virus. One measure introduced by the UK government to manage the pandemic was the categorisation of individuals according to their risk level, with those at increased risk advised to be particularly strict with limiting social contacts (NHS Digital, 2021). In the early weeks of the pandemic, those who were at high risk of complications from Covid-19 were included in a Shielded Patient List (SPL) (NHS Digital, 2021b) and were advised to stay indoors. These individuals, in theory, had access to support in areas such as obtaining food and medicines. However, the UK made international headlines for its inconsistent and unclear messaging around risk management (Zinn, 2021).

Clear messaging around risk categories is vital for reducing uncertainty and anxiety and helps public compliance with the imposed restrictions. Research conducted in Denmark found that tensions arose between risk categorisations and policies, and individual perceptions of risk (Fersch et al., 2022). Individual risk perceptions were shaped by issues of trust, anxiety and fear; emphasising the importance of ‘reflective trust’ (Fersch et al., 2022: 51) in institutions and how this trust can be enhanced by adequate communication. Prior to the pandemic, Sparf (2016: 244) discussed the potential negative implications of ‘generalised notions of specific groups being vulnerable’, including specific groups being defined as vulnerable regardless of whether they experienced actual vulnerability. The negative implications of such generalisations, as outlined by Sparf (2016), comprise misjudgements, wasted resources, and stigmatisation of the labelled group. This highlights the importance of better understanding how vulnerability is perceived and understood within the context of a pandemic.

Disability

The pandemic intersects with disability in three keyways. First, individuals with existing disabilities are at a greater risk of being negatively impacted due to higher risk of health difficulties resulting from complications of infection with Covid-19, and lack of access to adequate healthcare (Hillgrove et al., 2021; Jesus et al., 2021). Second, disabled people are disproportionately affected by lockdown measures, through limited access to health services, disrupted support networks, and interrupted therapeutic services. Finally, insofar as the proliferation of individuals living with invisible and episodic disability due to long Covid (ONS, 2022). To date, there has been little focus on disability within the discipline of medical sociology comparative to engagement with the intersections of ethnicity, socioeconomic status and gender (Mauldin and Brown, 2021). Considering the evidence demonstrating that disability is an important social determinant of inequality, the present work aims to address this gap.

Disabilities that present as episodic or invisible can produce unique life experiences. The Social Model of Disability (SMD) (Oliver, 2009) has been dominant in framing sociological views of disability. However, the SMD’s representation of impairment as entirely biological (and disability as social), leaves little room for a focus on impairment specific, embodied perspectives of disability. Therefore, the theoretical position informing this work is situated in social constructionism, recognising the social nature of both impairment and disability, necessitating an embodied perspective.

People with episodic disabilities can be considered to exist in a space of liminality; specifically, the interstices between health and illness. Individuals experiencing episodic disability have the power to disrupt traditional dualistic notions of health and illness – ability and disability. In her 2013 qualitative study of women with MS in Canada, Andrea Vick used queer theory and interpretative sociological theory to problematise conceptualisations of the body. Vick’s work (2013: 180) uses two interpretative strands; the first of which is ‘living in-between’ which conceptualises how people with episodic disabilities experience liquid borders. The second is ‘fluid embodiment’ which applies the lens of queer theory to release the body from fixed identity and stable embodiment by queering understanding of disability, thus permitting fluctuating forms of embodiment to become the norm. This theoretical position allows us to conceptualise disabled embodiment in a way that reflects the volatility of episodic disability, such as MS.

Tensions between legislative construction of disability and embodied experience have been long-standing for individuals with episodic disabilities. Lightman et al.’s (2009) research on the Canadian welfare system found that individuals with episodic disabilities were denied access to welfare support due to the fluctuating nature of their conditions. Further to this, Vick’s (2013) research showed how women with MS experienced ‘institutional bafflement’ because of their occupation of ‘two shifting worlds’, that is, the world of health and the world of illness. Such a ‘malleable embodiment’ was found to be ‘experientially impossible’ (Vick, 2013: 187) within public policy, meaning women with MS found their experiences discredited. This also occurred within the private sphere, with some of Vick’s (2013) participants describing family members as doubting their experience of MS due to its episodic nature. This shows the importance of research into embodied experiences of episodic disability, in private and public spheres.

Motherhood

Drawing on Hay’s (1996) theory of intensive mothering, Malacrida (2020: 470) argued that modern mothers are ‘expected to be all things at all times to their children’. This includes being endlessly nurturing, a strong role model, and child-focussed (Malacrida, 2020). Frederick et al. (2019: 165) outlined three values inherent in modern notions of good mothering that presume a non-disabled identity. First, the importance placed on independence in mothering responsibilities, second the preoccupation with risk prevention, and third the expectation for children to be free from hardship and responsibility. The exclusion of women with disabilities from notions of ‘good mothering’ emphasises the need to widen theoretical conceptions of disability to included gendered inequality. Thus far, there are minimal studies of disabled women’s experiences of parenting during the pandemic, aside from Wagner et al.’s (2022) qualitative study of academic mothers’ experiences. So far, no research has been conducted exploring the experiences of mothers with MS during Covid-19. However, Cummins and Brannon (2022) provide us with useful insights into motherhood more generally during the pandemic with their findings suggesting that the pandemic exacerbated and intensified existing gendered inequalities while simultaneously creating the opportunity to challenge and reshape existing discourses on motherhood.

This study aims to explore the experiences of women with MS regarding (1) how the pandemic impacted experiences of parenting, and (2) how the pandemic impacted experiences of MS.

Methods

To explore the individual experiences of mothers with MS, qualitative methods were chosen; specifically, the interview-diary-interview method. This method was adapted from Zimmerman and Wieder’s (1977) methodology which was originally designed as an alternative to participant observation. The reasons for collecting data in this way included the opportunity for retrospective questions to be asked in the interviews about the participants’ experiences of the pandemic over the preceding 2 years, and the solicited diaries allowed momentary assessment of their day-to-day lives of parenting with MS. Data from the first interviews and the diaries together informed the questions for the second interviews. The second interviews were not intended solely as a means of strengthening the validity of the data collected through the initial interview and diary; instead, they were used to generate further data, thus creating a richer understanding of participants’ experiences.

The diary method is particularly useful when working with people with certain impairments (Bartlett and Milligan, 2015) and has been a successful method for investigating experiences of health (Elliott, 1997). For people with MS, cognitive impairments are common (MS Society, 2014), meaning during an interview there could be information and experiences that are not recalled, or are missed. Diaries give participants time to consider what they want to say and think about the research over a more prolonged period; thus, providing greater agency within the research process. This was also an advantage of using a second interview. The combination of diaries and interviews is also recognised as a valuable method when attempting to understand ‘the fluid and complex nature of subjectivities and ‘emotional data’’ (Spowart and Nairn, 2014: 328).

Procedure

Ethical approval was obtained from the Ethics Committee for Social Anthropology at the University of Cambridge. Subsequently, participants were recruited through a poster shared online in a social media group for mothers with MS. The lead author is a mother with MS and has been an active member of the group for over 10 years. Thirty women responded to the poster, and those who expressed an interest were contacted in order of response to arrange a first interview. Potential participants were sent information sheets, then asked for written informed consent prior to the first interview, and the study was also explained verbally at the start of each interview. Interviews were carried out online. Automated transcripts from the recording were checked and edited. Eight women took part in January and February 2022 and each interview lasted between 40 and 90 minutes.

The narrative interviews were designed around questions used as invitations for the participants to tell their story of their experiences of MS and of parenting and the pandemic. The diaries were created using an online form and comprised of four questions: ‘How has your MS been today?’; ‘How has MS impacted on your parenting today?’, ‘What was your favourite thing about parenting today?’ and ‘What was your least favourite thing about parenting today?’. After the first interview, a link to the diaries was emailed to participants three times a week over a period of two weeks, with a request they be completed within 24 hours. The diaries received 33 responses (69% response rate). The interviews mainly focussed on retrospective questions regarding parenting with MS during the pandemic, whereas the diary questions were about parenting on that day. Therefore, the diaries yielded useful data about parenting with MS but generated less data about parenting in the pandemic with MS. Therefore, while the method was worthwhile for the researchers and participants, for the purposes of this article, the findings focus primarily on the interview data. Once the data from the diaries and first interviews had been analysed through an initial manual coding cycle and second coding cycling in Atlas.ti, participants were contacted for a second interview. Eight second interviews were conducted over March and April 2022 and were recorded, transcribed and analysed using the same methods as outlined for the first interviews.

Participants

The sample comprised of eight mothers with MS who had received their diagnoses between 1 and 15 years ago. Each participant had between one and four children, with child age ranging from 1 to 18 years, with a mean age of 8.8 years. Seven participants were living with the father of their children, one participant was recently divorced and was living as a single parent. Seven participants identified as white British, and one identified as being from a ethnic minority background. Seven participants had relapse-remitting MS, and one had secondary progressive MS. All had a varying levels of mobility impairment, including no impairment to mobility, occasional walking stick use and full-time wheelchair user.

Analysis

Data were coded using Atlas.ti. The process of coding was used to highlight meaningful units of data within the participants’ narratives that pertain to the research question. The codes were organised into three main categories which mapped onto the research questions; ‘Covid, MS and parenting’; ‘Covid and MS’ and ‘Covid and parenting’. The categories were refined by merging and linking codes within them, and themes were then identified. Once the analysis was complete quotes that were intended for use in the write-up were sent to participants. This form of member checking poses the risk of introducing new biases; however, no changes were made by participants. Gibbs (2018) argued this process increases internal validity by ensuring the ‘data actually expresses the reality’ of participants ‘lives and beliefs’ (David and Sutton, 2004: 28). At this stage, participants were given the opportunity to choose their own pseudonym, a process which helps to mitigate against unconscious researcher biases (Edwards, 2019).

Positionality

The first author who carried out the analysis recognises that their positionality inevitability influenced the data and analyses (Creswell, 2014). Being close to the topic of research could result in over-relating or making assumptions about similarities in experience. Participants would often allude to the ‘insider’ status of the first author and interviewer; for example, one participant said ‘well, you get it, you know what I mean’, highlighting the risk in letting a discussion close on the assumption of shared understanding, rather than delving deeper into the individual’s unique experience. While this risk is not entirely avoidable, it was partially mitigated by the second interview which provided the researcher time to reflect and revisit any necessary areas, using careful follow-up questions and probes. Mauldin and Brown (2021) emphasise the importance of ‘acknowledging one’s disability in the research design phase’ (p. 486), and they also acknowledge the value of the expertise gained through lived experience. Much of the data would simply not be available to someone who was not also a peer.

Findings

The overarching, organising theme was ‘balance’. Participants were often engaged in a complex balancing of biological, psychological and social factors across a range of interactions in both public and private spheres. This balancing act was not unique to the context of the pandemic but like many areas of life, was exacerbated and heightened by the impacts of the measures taken to control the pandemic. Seven sub-themes emerged; loss of support networks, balancing family needs, children above self, high risk, institutional ignorance, walking and enough is enough.

Loss of support networks

This theme represents how the pandemic impacted the mothers’ experiences of MS and family life through isolation. The effect of this is particularly felt by those with disabilities who may rely more heavily on both formal and informal support (Hillgrove et al., 2021). Sophie described the loss of unplanned support from friends during lockdown. The pandemic meant support had to be carefully planned, and, as such, forced participants to think more about their needs caused by MS:

I really had to, like, be more aware and have me saying, I need you to help me this week. And where before sort of more casual, they’d have dropped in and I said, you know what, I’m knackered. And they’ll say I’ll take them for an hour. But because they weren’t dropping in, I couldn’t tell them I’m knackered I need you to take them for an hour. [. . .] With Covid I think I’ve really noticed how much I rely on that. Like, you know, adlib free kind of childcare that I probably took for granted.

Lotta, a single mother and full-time wheelchair user, experienced loss of more formal support networks such as peer support at the MS therapy centre. The centre had reopened for treatments when the interviews were conducted, but the casual ‘sit and have a cuppa’ afterwards was no longer available, and Lotta wondered if it would ever return. Lotta articulated the experience of feeling the loss of support more acutely due to the additional parenting challenges faced by many during the pandemic:

The difficult thing is the demands of being a parent increased phenomenally and the services and the support available just disappeared.

Carol discussed not having any family support nearby, having moved home shortly before the lockdown. Carol emphasised the ‘clinical’ nature of social interactions at baby groups since the pandemic:

There’s no toy sharing, there’s no you know, there’s no cups of tea at the beginning of the classes. It’s very kind of clinical almost.

Sina, a first-time mother, expressed that not having support networks was something she had chosen, to protect her child due to ‘that general fear of Covid and you don’t want to subject your child to additional dangers’.

Balancing family needs

‘Balancing family needs’ was frequently mentioned in relation to home-schooling and the difficulties the mothers faced in managing work, their health, and their children’s education. This was articulated by Lotta in her diary entries, and elaborated on in the interview:

There’s always things that need to be done [..], and I often find like I try to get the stuff done so then I’m free to play with the kids, but by the time I’ve done stuff, I’ve used all my energy.

During periods of school closures, homeschooling created additional challenges for balancing family needs. Melanie started working from home during the first lockdown, and described managing her work and the children’s as ‘a juggle’. She also expressed how home-schooling was experienced as being her responsibility:

Though my husband was here, and was able to help it just sort of felt more that it was me.

Sophie described home-schooling once support bubbles were allowed as being easier, but still a challenge that fell mainly to her due to technological barriers faced by her parents when they helped with childcare:

There’s stuff they just didn’t know to do, it was like all on apps and you know, printing out and all that extra admin you had to do before they could even get to do the work, you’re just like argh.

When Lotta and her children had Covid, balancing her family’s needs meant adapting her usual parenting standards:

School were sending out work I was like are you joking. [. . .] I just emailed her teachers and said I have Covid, I have kids with Covid, I haven’t got the energy to fight to get them to do some work. I’m really sorry, it’s not gonna happen.

One coping strategy employed by mothers when family needs became unbalanced was humour. This was often used throughout the interviews as a method of highlighting the extreme nature of their situation, but with humour removing the danger of being seen to be complaining about their circumstances. Lotta’s answer one day to the diary question ‘what was your least favourite thing about parenting today’ was ‘not being fast enough to stop the toddler putting the kitten in the toilet’.

Children above self

Carol’s description of parenting a newborn during one of the national lockdowns epitomises the extreme ways in which mothers often put their children’s needs above their own, with the restrictions on visiting exacerbating the situation:

The feeding plan that the hospital came up with I’m not exaggerating, literally had no time for me to sleep at all, at all. Not half an hour downtime. It was just, you know, it was a breastfeed and then I had to express then she had to be cup fed and then off we went again.

For Lotta, putting her children’s needs before her own led to her needs being downplayed and ignored:

I am a human doing not a human being, I just don’t stop, and I do coz I don’t have a choice and I know that sounds stupid, but I do coz I don’t have a choice and I have to prioritise getting their shit sorted and basically, I just fall completely by the wayside.

Kelly also frequently put her children’s needs before her own health. She recounted complications she had with an MS drug the year before:

The nurse told me, your white blood count’s really low and I was like, well this is highly inconvenient because it’s the bairn’s birthday in a couple of days and I’ve already made plans to take her out and then it’s [daughter’s] birthday next month I can’t be missing that and she was like Kelly, you need to be careful you need to protect yourself, it’s not just Covid, it’s everything.

These complications meant that Kelly had an MS relapse, yet she still described her motivation to make sure her health did not impact on her daughter’s education:

I started relapsing and stuff and I messaged her teacher and I said, look, I know I’m submitting her work later and later all the time, but I said but she is doing it every day it’s just I’m not well and I explained and she said as long as she does her maths and English, forget everything else it’s okay. And I said no, I’m not doing that. I don’t want to because then she will fall behind and she doesn’t need to.

A few months later, during the second interview, Kelly explained she was looking to start a new MS drug, when her daughter caught Covid. When asked if she was concerned about catching it and her treatment being delayed, Kelly was adamant she would care for her daughter, regardless of the risk, ‘I’m not going to not care for her, am I?’. Kelly shared that she did catch Covid, and her treatment was delayed.

Walking

During the early stages of the first lockdown, people in the UK were permitted to leave their house once a day for exercise. This was prohibitive to participants who experienced mobility impairments due to their MS. For participants who were new parents, walking as the only means of socialising was particularly difficult because they were unable to take part in any new parent and baby groups:

I couldn’t walk a lot so I just didn’t go to too many walking groups, to be honest, until actually, after January time, I went to they used to be a buggy walk group that I used to go to and that was quite good just to meet up with other mums. But still, you’re out in the cold and it’s not the same as being in a room with other mums having those moments. (Sina)

However, there were also positives; Emily described how her mobility improved during lockdown. Because her husband was working from home, she felt more able to push her limits of physicality, rather than having to save her energy for later in the day.

I wasn’t working – all I had to do was look after my son and myself like that was it, nothing else. And my husband was around a lot more to help and like go on walks and help me push myself and I knew if I struggled he was here.

Sophie demonstrated how, for her, she balanced family needs with her mobility. As she could not always take her children for a walk, she tried to compromise by taking them out and staying in the car:

I think parents with MS anyway, is about, as I say, balance, and like the exercise thing, like I would say like I really don’t think I can go for a walk today. But I could take you in the car and watch you while you go round or I’ll take you to the play park and sit in my car. So trying to like just, you know, make sure they were getting the best they could but without my health being compromised.

High risk

The theme ‘high risk’ related to the ways in which participants balanced and perceived their own and their family’s health risk, an area heavily influenced by the pandemic. For the participants in this study, being assigned to a risk category was a frequent source of confusion and distress. Some participants described finding out they were clinically vulnerable as being akin to rediagnosis:

Whenever they said at the start you’re, you know, clinically vulnerable because they didn’t really know how it was effecting people with MS. I felt like I was like being like rediagnosed all over again. Like I felt like you know, it was like, oh, here I am back in a box that I was determined not to be in. (Sophie)

Similarly, Carol, who was in the shielding category due to her being pregnant and having recent treatment, struggled with being labelled as vulnerable:

I think it’s the way it was spoken about in the media. I can’t remember the term they used but it was like, you know, the real vulnerable. We must look after our most vulnerable members of society. You know, these people are exceptionally at risk. And I think it was all that heavy like, I felt like I was either at death’s door or really old and frail. Just from the language that was being used really.

One coping strategy that participants employed to manage their new label as a ‘vulnerable person’, was to make the reason for their caution being to protect others around them, who they saw as more vulnerable than them:

We’ve kind of got all these older people as well that we were in close contact with and sort of looking after, so it wasn’t just about me, catching it as well, I was worried about passing it on to them. (Sue)

Some of the mothers also discussed their spouses’ health or demographic characteristics that could lead them to be vulnerable to complications with Covid. While no one directly denied their own level of risk, focussing their concern on others appeared to be a coping strategy to justify their cautious approach, without having to directly acknowledge that they too were at increased risk.

Institutional ignorance

Related to ‘high risk’ was the sub-theme of ‘institutional ignorance’. In particular, participants experienced confusion around the risk categories of clinically vulnerable (CV) and clinically extremely vulnerable (CEV) and how the NHS dealt with patients in these risk categories. The mothers in the CV category expressed that they were happy not to have to shield, but that by not being in the CEV group, they missed clarity over what they ‘we’re meant to do differently to anyone else’ (Sue). Carol was told verbally to shield, but had received no formal evidence that she could show to demonstrate her need to shield. Sina, who was pregnant during the first lockdown, experienced confusion regarding which risk category she was in. After an ambiguously worded letter from her neurologist, she tried to seek clarification from her midwife, MS nurse and neurologist, all of which led to either no answer, or ‘we’re not sure’. This led to her making her own decision:

I was so upset, so upset when I received this letter, because I didn’t want to shield I didn’t want to have to stay in the house [. . .] And because there was that added confusion where I’m not sure whether it is or not I didn’t, I followed it for a few days and then I thought actually no, no one’s confirmed that this is true.

Participants also experienced institutional ignorance from the NHS during later stages of the pandemic when there was confusion over their eligibility for anti-virals. Emily did not receive them when she had Covid-19 after making multiple phone calls and not hearing back. She said if she thought she needed them she ‘would have kicked off’ but that the ‘NHS must be busy’. Sue experienced similar confusion over her eligibility for a priority PCR test, again making multiple phone calls.

Enough is enough

The final sub-theme of ‘enough is enough’ relates to participants who took the decision to stop isolating or taking other additional measures after the lockdowns. The mothers described finding it difficult to re-join society once gathering in groups or inside was permitted again. All participants continued to ‘be careful’ once restrictions on social contacts eased. Most participants expressed how they had a sudden realisation of how much time had passed since the start of the pandemic. The catalyst for this was often seeing how much their children had grown and changed, which prompted reflection on the significance of time passing with a degenerative condition. For some participants this realisation was the cause for them deciding to resume their normal activities and emphasises the positive ways in which the women felt that MS can act as a motivator to live life fully. Kelly described how the Covid-19 pandemic has encouraged her to get back to her MS ‘bucket list’:

The amount of time that we’ve been stuck not being able to do anything and it’s like kind of you get to a point where you know enough’s enough. There’s so much we want to do, and now should be getting to a point where we can do them so erm I’ve booked a few things I’ve gotta list of things. Like when I first was diagnosed I wrote a list of things I want to do while I’m still able bodied.

All the participants discussed having more social contact after the lockdowns as being a decision they made because they felt the risk of harm to their children from not living ‘normally’ and their own mental health was greater than the risk of Covid. No-one cited the reason as being that they felt the risk was gone.

It probably wasn’t till after the second lockdown like this time last year that when that eased I was like right enough this little boy needs some experiences and we’re gonna get out there and do some things. (Emily)

I was like I am actually really sick of trying to live like, like this. Like I just feel like if I don’t do the social stuff that I’m actually gonna go mad and I have to prioritise my mental health a little bit in that respect, I think, because I’ve been so so cautious for all of it that I’m just done. I’m just fed up of it. I’m just done with it. And I’m not really I still have been careful. I’m saying I’m done. (Sophie)

This theme highlights a salient and persistent feature of the pandemic for these women, of learning to live with the ongoing risk.

Discussion

The present study was an in-depth exploration of eight UK mothers’ experiences of parenting and MS during the Covid-19 pandemic. The findings demonstrated the ways in which the pandemic compounded challenging experiences of motherhood and MS. Participants engaged in acts of balancing of emotional, physical, and social factors in the private and public spheres, and the pandemic disrupted the often-delicate balancing act participants had in place, meaning there were times their own health and well-being suffered as a result. There were also experiences unique to the pandemic surrounding risk management and vulnerability, where participants demonstrated a range of reactions and coping strategies to being labelled as high risk from a new and emerging threat. The findings relating to being categorised as high risk showed the ways in which policy decisions discursively create subject-positions and prescribe what it means to legitimately occupy them (Foucault, 1982), which can serve to challenge and undermine embodied experiences of episodic disability.

The adverse effects of the pandemic for mothers in this study were particularly evident in the loss of extended kin networks and community support, which caused the mothers to be more conscious of their disability, in line with earlier research suggesting that disabled people are more adversely affected by disasters such as pandemics (Hillgrove et al., 2021; Jesus et al., 2021). The psychological, physical, and social impacts of a sudden loss of support highlight the need for future pandemic planning to incorporate systems such as support and childcare ‘bubbles’ (DHSC, 2020) to mitigate the risk of disabled people being overly adversely affected by government restrictions.

A further challenge to participants exacerbated by the pandemic was in meeting the modern ideology of being a good mother. Intensive mothering (Hays, 1996) is a gendered ideal from which women with MS are not immune and this research suggests that gender, disability, and motherhood intersect to produce unique experiences that were compounded by the pandemic. The gendered impact of the pandemic is a finding supported by existing research (Chen, 2020; Schuster, 2021); and the effects of intensive mothering ideology on women with disabilities is supported by Frederick et al. (2019) and Wagner et al. (2022). Like the participants in Frederick et al.’s (2019) study, mothers in this research also demonstrated the need to uphold notions of ‘good motherhood’ as evidenced in their actions and desires to ensure their children were not impacted by their MS. The frequent use of humour as a coping strategy, can be understood as participants ‘rejecting or reframing’ ideals found in notions of ‘intensive mothering’ (Frederick et al., 2019: 171), hence the mothers simultaneously tried to adhere to, and reject, the ideals of intensive mothering in their parenting approach during the pandemic.

Furthermore, as the mothers often put their children before themselves and constantly balanced the needs of their family, this suggests disability can be an additional pressure in meeting intensive mothering standards, with participants in this study feeling the need to compensate because they have MS. This was particularly evident regarding home education, with participants going to great lengths to ensure that no home education was missed due to their MS, or when the mothers stopped isolating for the sake of their children. This supports the findings of Wagner et al.’s (2022) study of academic mothers with disabilities during the pandemic whereby mothers reported their needs came last. The mothers’ drive to compensate for their MS by altering their parenting standards also supports the findings of Frederick et al. (2019) who found that mothers with disabilities upheld and expanded dominant standards of ‘good mothering’. The desire to put family members above themselves was also seen in Hallowell’s (1999) qualitative study of women undergoing genetic counselling for breast-cancer risk. The women in Hallowell’s research frequently cited their reasons for undergoing preventive cancer treatment as being to ensure they could continue to fulfil caring obligations, to remain the ‘carer or nurturer’ rather than becoming the ‘cared for and nurtured’ (Hallowell, 1999: 163). Taken together with Hallowell’s findings, the theme ‘children above self’ suggests that the pandemic provoked a disruption to participants’ identity as a mother, as it forced them to focus more on their MS. This disruption to identity evidences the importance of understanding identities from a social constructionist perspective, an ontology that allows us to perceive identities not as solid and fixed, but rather as fluid and in a constant state of flux (Vick, 2013).

The themes ‘institutional ignorance’ and ‘high risk’ both evidenced the importance of clear messaging around health risks, especially at times of national crisis when the public are asked to dramatically alter their way of life. Fersch et al. (2022), Figueiras et al. (2022) and Sparf (2016) outline how uncertainty is a key feature of anxiety, and unclear risk messaging can contribute to that anxiety, especially for vulnerable groups. This was supported by the current findings which showed confusion over risk-based messaging was a precursor to feelings of anxiety, unease, and potential non-compliance. Further, the present study demonstrated the importance of paying close attention to the wording surrounding descriptions of vulnerable groups, because problems can arise when individual perceptions of vulnerability do not match with institutional perceptions (Sparf, 2016). Foucault’s (1982: 212) concept of ‘subjectivation’ can be usefully applied to the ways in which the participants can be seen, prior to the pandemic, to have internalised the social norms of the subject-positions of a ‘good mother’ or a ‘woman with MS’. Such norms have an ‘apparent unchangeable reality’ which is ‘consolidated’ by an individual’s enactment of them (Martin, 2007: 127), and tensions arise when an individual feels at odds with the norm and subsequently attempts to subvert it. The current findings suggested that the mothers struggled with their government-assigned risk category during the pandemic, as this limited their ability to fulfil the caregiving duties associated with intensive mothering ideology. In this way, subject positions were formed discursively at the macro level, yet it was through exploration of the micro level that an understanding was gained of how these positions were experienced individually by mothers with MS.

The findings also revealed that the government permitted activity of walking was exclusionary to some disabled people. During the first lockdown, walking was permitted once a day but sitting on a bench was not. For people with invisible and episodic impairments, such as MS, who might need to rest during a walk, this made a daily walk inaccessible. In the present study, Emily’s improvement in mobility during lockdown because of her husband’s support showed how people with MS’s health and mobility could be improved with sufficient support, demonstrating how extrinsic contextual factors can influence episodic disability (Boyd, 2012). Emily’s experience of improved mobility highlights the possibility of social factors to impact biological impairment, thus demonstrating the importance of sociological research to help understand episodic disability, to learn what social factors could improve the lives of parents with episodic disabilities. As Vick (2013) argued, when studying episodic disability, it is vital to consider both the experiential and social constructionist dimensions. The tensions that can be provoked by the fluid nature of participants identities as disabled is evident through the mothers’ sometimes uncomfortable experiences of being classed as vulnerable. The current findings demonstrate some of the ways in which individuals with episodic disability experience variations in their health, and subsequently in their identity as a disabled person. Applying queer theory to risk studies in the future could be beneficial by challenging rigid conceptions of risk and vulnerability, and, in turn, encouraging a more nuanced understanding of individual identities at times of crisis.

Finally, the sub-theme ‘enough is enough’ summarised some of the ways that living with a degenerative condition created distinct experiences for mothers who felt particularly frustrated at the passing of time in a period where they needed to put ‘normal’ life on hold. Yet, in some ways, the mothers in the study also showed resilience and reframed their renewed awareness that their impairment was degenerative as motivating to live life to the fullest. These findings support Vick’s (2013) position that, from an embodied perspective, episodic disabilities exist in a liminal space between health and illness. The present study demonstrates how participants identities moved fluidly between and within concepts of good motherhood, categories of risk and vulnerability, disabled/able-bodied, and health/illness. This emphasises the usefulness of applying queer theory in studies of episodic disability as this lens allows the body to be freed from fixed and stable identities.

It is important to reflect on some of the limitations of the present research. All the participants were cis-gender and most were heterosexual, white and middle-class. Future research into episodic disability would be enhanced by an intersectional approach to include embodied experiences from disabled people from ethnic minorities, who have lower-income, and are LGBTQ+ . Hence, an intersectional approach to studying minority parenting groups should be adopted in future work (Bower-Brown and Zadeh, 2021).

Initial research has shown that the pandemic has a uniquely gendered impact, as well as adversely affecting those with disabilities. This research was specific to the context of the UK and considering that measures taken to control the pandemic differed across the world, further research is needed to understand the social impacts of the pandemic in other geographical contexts.

Conclusion

This study emphasises the need for clearer health messaging, inclusive public policies, and support for parents with episodic disabilities. The findings reinforce disability as a structural determinant of health and highlight the importance of intersectional research to better support diverse disabled parents.