Acceptance and management

Participants varied greatly in their self-reported illness management. The heterogeneity of experiences is unsurprising, given that MS does not have a single, simple trajectory. Symptoms experienced by some (eg, fatigue, balance issues, numbness), were absent for others. Several patients engaged in a range of positive health behaviours, and all but one reportedly took disease-modifying therapies (DMTs); they attributed physical and psychological improvements to their adherence to treatment and a change in their overall attitude towards their diagnoses. However, others reported non-adherence with central components of their treatment regimen, including not taking their medication as prescribed. One participant struggled with MS to an extreme extent, across physical, psychological and social domains, whereas several others displayed adjustment and acceptance. Their varying experiences of illness management are explored in this section.

Participants who had high expectations of their illness management were self-critical when they believed they did not reach this ideal. This was particularly evident among those who actively researched their condition, potential treatment options, and who made lifestyle changes. Several participants reported positive outcomes from attending physiotherapy or from self-directed exercise. Lokesh’s case illustrates this; discussing his engagement in physical activity as providing therapeutic benefits, he criticises his consistency:

Lokesh: I should be doing more exercise. I do yoga, I do meditation. That helps in flexibility.

Interviewer: You’ve seen results?

Lokesh: I see results when I don’t do it for a while, I could feel that I’m much worse.

Interviewer: I see. How long have you been doing this?

Lokesh: Since the beginning.

Even if self-critical, Lokesh’s MS management, which began at the time of diagnosis, demonstrates an active coping style. Unlike some other participants, his early focus on treatment and his beliefs about its effectiveness may have helped Lokesh come to terms with his diagnosis. Throughout his interview, he projects an image of someone mindful of the illness’s demands, but who strives towards the best possible life with MS.

This drive towards health is shown by others, for example, Imad. The year following his diagnosis was characterised by anxiety about death. However, the health behaviours he initiated brought about a positive sense of self: ‘I went like freakishly healthy for about six months… I stopped smoking, I stopped drinking.’ His use of the term ‘freakish’ alludes to his belief that he went too far, although he suggested that this is a typical reaction after MS diagnosis. While Imad notes that he does not exercise as much as in his early postdiagnosis days, he continues to engage in positive health behaviours.

I try to run three times a week. The only one I do consistently is my long run on Friday morning because it’s Friday morning. I wake up, my wife and my kid are still passed out, and I go for my run. I think that’s the best thing.

Recognising the physical and psychological well-being benefits of lifestyle change, Imad advocates: ‘Nutrition, exercise is key. Exercise is key, I’m telling you. Anyone who has MS, get off your ass and work out.’

Even when benefits were evident, engaging in positive health behaviours such as diet or physiotherapy was a challenge for some. Aliyah admitted giving up on physiotherapy, something that previously worked for her. Indeed, she believed that physiotherapy outperformed medication in treating her balance issue, stating ‘it was REALLY good.’ Although she stated that she had no free time after starting her postgraduate degree, she also admitted intentional non-adherence to the recommended treatment.

Aliyah: I never miss the pills. But with the injections, I used to (laughs).

Interviewer: You used to forget, okay.

Aliyah: Not forget. I used to intentionally miss it. I hated it… I used an auto-injector, and every time I took the injection I used to be scared, even though I did it so many times. I hated it…

Interviewer: Have any of your doctors recommended a special diet to you?

Aliyah: Yeah, I actually, I've actually seen one of the dieticians here and she recommends a specific diet, but I have not, uh, I haven't like, uh… done it. You know why? Because I hate it when I have to think about it.

Aliyah did not share her diagnosis with work colleagues, not wanting small mistakes she might make at work to be ‘blamed on MS.’ She further said that she hates it when people ‘blame MS for everything’, suggesting that this may be something she has encountered in other realms of her life. She believes that ignoring MS is a positive strategy in her illness management, stating ‘what I found good about myself is that I completely ignore that I have MS, like I completely ignore it, I think this helps.’ This type of avoidant coping was evident to varying degrees among four of the eight interviewees. By choosing to not think about MS or adopt lifestyle changes recommended by healthcare providers, they believed they retained a greater semblance of ‘normal’, old selves.

Rashid’s experience was markedly different; he neither coped actively nor was he able to ignore the physical and psychological toll MS had on his life. By his admission, he struggled to manage his MS:

It almost feels like I'm helpless. I’m having a vision problem. I used to drive cars, but now I can't. The balance and the depression is like a big… it’s a big deal. And I’m just trying to live. The problems affect me in a bad way… I don’t know what’s wrong, is it MS, or… Even when I feel happy it just feels like seconds.

With marked deterioration in his health, including major depressive disorder and loss of sight and balance, he shared his perception of obstacles that impacted his MS management. He no longer took DMT, citing the cost as prohibitive. However, he also alluded to side effects as a reason for stopping both MS therapy—‘… it was almost like giving me a heart attack, so it was not working’—and treatment for his clinical depression—‘…I was like killing myself slowly.’

At the time of his interview, Rashid’s only regular interactions were with his sole supporter, his mother—‘She’s my life actually. She’s my motivation, you know, to be alive.’ It was evident that Rashid had lost hope. Indeed, his story was characterised by loss—the loss of a young man’s social life, truncated education opportunities, and an ever-shrinking lifeworld. Describing himself as peaceful and quiet, but also as helpless and without friends, there was resignation in his narrative.

Contrasting the concept of loss, other accounts demonstrated growth after diagnosis. Acceptance and management may be initially challenging, but can improve over time. Anna shared encouraging feedback she received.

[The support group leader told me] ‘I've really seen a change in you this past couple of years, seeing you blossom. Taking charge of, managing your MS, vs just it being something that you were up against.” So, I can, I can say now, that I am doing a better job at managing it. But it’s not perfect, you know, it’s really hard.

The support group leader’s words acknowledged Anna’s efforts and reassured her that she was on the right path. There was a sense that, for Anna, management was a process rather than an attainable, final state. She recognised that setbacks would happen, but that these would not defeat her. Anna’s change was not merely in the shift from life before MS to life after MS, but rather in her incremental MS management improvements over time.

Counting one’s blessings

Participants’ narratives touched on their outlook on life with MS and the resultant changes in their interpersonal relationships. While all noted the impact of MS on their psychological well-being and relationships—new roles were undoubtedly negotiated with family and friends—the changes wrought by MS were not always viewed negatively.

Six participants viewed themselves as lucky in several ways and reported gratitude for ‘blessings’ in their lives. Primarily, they appreciated support from family, friends, work colleagues, healthcare providers and others living with MS. Participants juxtaposed their experiences of those who support them with those who do not. Immediate family members (parents, children, siblings, spouses) were often credited with being chief sources of support. In Batool’s case, her husband is the central figure in her support network.

My husband—he understands what I’m going through. Not fully, but he tries his best. He already let’s say (took) off some of my responsibilities, uh, and whenever he feels like I need rest he will say to me ‘just you go, I will do it.’ So, he’s really my main supporter.

She later elaborates on the redistribution of household responsibilities:

I have four kids, now I don’t do everything for them, okay, previously I was doing A to Z for them. Now I try to keep them independent as well, and align my husband with the activities that they have. It’s a responsibility that we both have.

This form of instrumental support allows Batool more time to rest and take care of her health. Identifying their ‘shared’ responsibility, she suggests that she and her husband are partners in their relationship and the management of her illness. Moreover, she appears to see an additional benefit in relinquishing some of her childcare responsibilities; her children have become more self-reliant.

It was apparent that family was not always a source of support. Killian, one of the younger people interviewed in this study recalled his father’s immediate reaction to his diagnosis as ‘you’re going to f***ing die, you’re going to die.’ The detail with which Killian recalled his father’s words demonstrates the impact they had. There was an acute absence of support in Killian’s family home in the 6 years following his diagnosis, which resulted in his development of non-familial networks of support, comprising colleagues and friends. Killian referred to himself as ‘lucky’ twelve times during his interview; reasons included his early diagnosis, the availability of effective medication, having a supportive work environment, and maintaining a positive attitude towards life with MS.

I'm lucky, because, you know stuff like, you're working, there're a lot of people with this ailment who are a lot worse. That in itself gives me some hope. Regardless of how anxious, what anxiety I have, I’m very lucky. That my treatment so far has been so good even through very tough times since my ailment, my diagnosis. So, I think I’m just thankful that I’ve been diagnosed when I was young, that’s it. I think I’m just lucky.

Killian’s maintenance of a positive outlook since his diagnosis was not easy for him. He refers to his innate tendency to view the glass as half empty and acknowledges difficulties in maintaining an optimistic outlook. Viewing himself as fortunate relative to others with the same condition perhaps offsets the negativity and lack of hope he encountered at the time of his diagnosis.

One participant, Maya, reported being thankful for the illness itself. She regarded her diagnosis as a turning point in her husband’s relationship with God. A silver lining to her MS journey, she credited her illness with resolving his fractured faith.

I’m so happy, I’m actually so, so, so happy that I got MS. My husband has a ‘faith issue’, let’s put it that way, and, because of MS, he got so much faith. Look, my husband loves me so much, and I love him so much. He was so devastated and broken to pieces, and he realized ‘She got a disease that has no cure! That nobody can do anything about.’ I couldn’t walk. I literally couldn’t walk. He had to carry me up and down the stairs… he was so broken apart and he realized the only one who could fix it is God! ‘I better get back to him! I better get back on track.’ I’m so happy, you have no idea!

This acknowledgement of her husband’s devastation at her diagnosis is jarring when viewed alongside Maya’s happiness, particularly in the context of their loving relationship. However, ascribing a positive dimension to the MS diagnosis may have allowed Maya to cope, see a ‘bigger picture’, and make meaning from her new identity.

Living differently

The contrast between participants’ lives ‘before’ and ‘after’, connected only by a liminal period of symptoms, was shared by five participants; they reported their lives had significantly changed since the diagnosis. Most viewed their illness and the resultant lifestyle changes as a burden. For some, the demands of symptoms, treatment regimen, and the pressure to conform to healthy but restrictive lifestyles, were incompatible with the daily responsibilities that predated diagnosis.

Batool explained how the demands placed on her did not change after she was diagnosed with MS. She struggled to reconcile the two ‘Batools’.

I don’t want people to compare me with my previous life, when I didn’t have MS. I did lots of changes in my life to accommodate myself with the disease. I just need people to understand that this is a new Batool, okay, that’s been trying to develop herself. But do not compare me please with the previous Batool that had no MS in her life.

This dichotomised self and Batool’s literal identification as a ‘new’ person with a previous life illustrates the extent of the change caused by MS. While she explicitly recognises this change, it is evident that she believes others do not. She suggested that continuous demands placed on her by others stem from a lack of awareness about MS, an illness she refers to as ‘a monster in (my) head.’ Despite pressure to be her old self, and live up to her old responsibilities, Batool listens to her body and the physical implications of MS such as fatigue:

I feel like my body is calling, I have to, you have to get shut down, to go to sleep. Because I need energy, so, people might not understand, like if, especially you have family commitment, and, uh, like you are escaping from this responsibility, but for me, I try to ignore it.

Although invisible to others, symptoms of MS, especially fatigue, impacted day-to-day activities. Like Batool, Anna regarded MS as resulting in an ‘enforced slow-down’.

Cognitively it’s had a huge impact on my memory and my ability to focus. On a bad day I’ll get really terrible aphasia. Like, speaking as good as I am right now is a very good day for me (laughs), so, which is difficult when you’re trying to do something like class, you know, or talk to other people and things of that nature… On a bad fatigue day, I may spend all day napping, crawled up with my cats, and I always really feel guilty because I'm not able to do any housework or anything like that. But it’s also something that I've come to accept, that every now and then I'm just going to have a bad day like it’s just going to happen.

Previously minor activities were celebrated: ‘Hey, I have the energy to go out and meet with my friends. That’s fantastic, that means a lot to me.’ Although Anna reports feeling guilty because of her inability to manage some responsibilities, she shows a pragmatic acceptance of what she can and cannot do.

Diagnosed shortly after completing high school, Aliyah’s entire adult life has been impacted by MS. She shared that she did not have the opportunity to experience early adulthood in the same way as her peers. For example, she did not learn to drive, partially due to fears regarding balance, her most prevalent MS symptom. Despite asserting that she can still do the things she used to, Aliyah acknowledges a need to ‘think’ about her activities: ‘Before I wouldn’t think about it I would just take the stairs, now I have to think about it, like okay, how is my balance now, how is everything now? I have to, like, think about it.’ Apart from curtailing the independence associated with young adulthood, the absence of this rite of passage differentiates her from her peer group (those without MS) and others diagnosed with MS at a later age.

The experiences of participants illustrated above contrast with those of Killian, Lokesh and Imad, who acknowledge the challenges posed by MS, but refuse to be defined by their diagnosis. Killian reportedly experienced MS symptoms throughout his early life and was habituated to what he termed as the ‘fuzzy’ or ‘sticky’ sensation of MS. He did not indicate that the diagnosis changed his life course. Having lived with symptoms for several years before his diagnosis, he said ‘I don’t consider (MS) a disability, I don’t consider that an anomaly, I know how to go about my normal life. I stayed on a job, I went to university with it, it was normal.’ While he identifies difficulties in life with this condition, he did not believe that MS should define his identity. He advises that others “… don’t let the MS consume you. It’s, it’s partially life. You have to manage it but it shouldn’t be the centre of your life.’

Lokesh also references the concept of normality, although a ‘new normal’, while acknowledging that his life has changed since the diagnosis:

Obviously you can’t do much, as much as you’d like to, in terms of exercise, in terms of walking, in terms of interacting with people. It’s not that I withdraw socially, but I avoid too much interaction. I get tired. I feel like I need time for myself.

Even though the physical implications of MS were apparent in his case (he had impaired gait and balance issues), he claimed ‘I don’t feel different. I behave and think normally. It’s just that physically you might not look the same.’ Lokesh says that his physical appearance as someone with an evident disability does not bother him, ‘I don’t really care about what people think.’

Inner strength helps Imad, who views himself as someone who actively confronts life’s challenges. A self-professed optimist and extrovert, his attitude helped him deal with the shock of the diagnosis and manage the condition in the longer term.

I think I have a character of, you know, get things done. Get knocked down, get back up, do it again. I’m an entrepreneur, you know I’ve started my own business. It’s not easy, it’s not my first business, so, you know it’s a challenge that you have to take. You have two options, right? Either you’re going to sit there and cry in the corner, or you’re going to go do something about it, so I get up and do something about it.

Participants’ subjective experiences highlight variability in life with MS. Most, irrespective of the myriad symptoms, were practical in their outlook, recognising limitations but getting on with their lives. The psychological, physical and social impacts of MS were evident in narratives around change or, conversely, determined allegiance to prediagnosis identities.