A qualitative study of patients’ experience of living with inflammatory bowel disease: A preliminary focus on the notion of adaptation

Abstract

This study investigates the lived experience of inflammatory bowel disease with the aim of examining the process of adapting to life with inflammatory bowel disease. Adaptation is often referred to as the desirable outcome in chronic illnesses such as inflammatory bowel disease; yet little is known as to how this is achieved. A total of 10 Crohn’s and 12 ulcerative colitis patients recruited from online support networks participated in individual, semi-structured interviews. The study has identified the notion of a ‘new normal’ as central to adaptation, whereby patients seek to recover a sense of normality by finding an equilibrium between their lives before and after diagnosis.

Keywords

adaptation chronic illness Crohn’s disease inflammatory bowel disease ulcerative colitis

Introduction

Inflammatory bowel disease (IBD) is an umbrella term that encapsulates two similar yet ultimately distinct chronic diseases of the gastrointestinal tract: ulcerative colitis (UC – affecting the innermost lining of the large intestine and the rectum) and Crohn’s disease (CD – affecting any part of the digestive tract from mouth to anus and may permeate all layers of the bowel lining). The collective term is legitimised by the similarity in epidemiology and aetiology of the two conditions (Kirsner and Shorter, 1995). IBD usually develops during adolescence and is characterised by phases of acute abdominal pain and gut spasms, nausea, fever, fatigue, diarrhoea and rectal bleeding (Gearry et al., 2006). Should patients manage to achieve periods of remission, fatigue still largely affects patients’ daily functioning (Czuber-Dochan et al., 2013).

The impact of IBD on the lives of patients is widespread. Besides having to deal with the aforementioned symptoms, patients often experience fear and humiliation as a result of stool incontinence, for example, a profound effect on family life and work (Dudley-Brown, 1996), a feeling of losing control (Hall et al., 2005) as well as possible delayed growth and sexual development and social isolation (Sparacino, 1984). Compound these psychosocial effects of living with IBD with the common side effects of regularly prescribed medications, such as the steroidal treatment prednisolone which often includes weight gain and mood swings (Bayless et al., 1988), the high possibility of needing surgery or an ostomy bag (Canavan et al., 2006), as well as the increased risk of intestinal cancer in IBD patients (Jess et al., 2005) and it becomes evident that it is almost impossible for quality of life to not be impacted in IBD (Larrson et al., 2008).

Current theories on the cause of IBD are an amalgamation of infectious (Luther et al., 2010), environmental (Lakatos, 2009), genetic (Cho and Brant, 2011) and immunologic factors (Verhoef and Sutherland, 1990), which makes identifying a cure extremely difficult due to the numerous possible complex interactions that may trigger the illness. This issue is compounded by the growing incidence of IBD as demonstrated by Molodecky et al. (2012). They found that from 167 studies conducted in Europe from 1930 to 2008, prevalence of UC and CD was as high as 505 and 322 per 100,000 persons, respectively, and that in time-trend analyses 60 per cent of UC and 75 per cent of CD studies showed a statistically significant increasing incidence of the diseases. It is thus imperative that healthcare practitioners better understand the lived experience of their patients and can be mindful of this when delivering treatment plans which may incorporate psychological interventions to maximise patients’ quality of life. This notion is further supported by the fact that although there have been major advancements in the treatment of IBD, in particular the rise of biologic agents (Triantafillidis et al., 2011), the side effects of such medications can be harsh (Stallmach et al., 2010). The importance of patients’ health-related quality of life has been highlighted by Drossman et al. (1989), who found that patients’ functional status and disease concerns were found to correlate better with scores of well-being and healthcare utilisation than a physician’s rating of disease activity. In conjunction with this, the presence of anxiety and depression among IBD patients regardless of disease severity (Vidal et al., 2008) further suggests the importance of developing an increased understanding of the lived experience in IBD.

Psychological research to date has advanced the understanding of IBD and improved its prognosis. For example, Sewitch et al.’s (2001) study on perceived stress revealed that for those patients who experienced high levels of perceived stress, high satisfaction with social support decreased the level of psychological distress and facilitated adjustment to the disease.

It is this notion of adjustment or adaptation, however, that is often referred to in the IBD literature that remains under-studied. For example, Sajadinejad et al.’s (2012) review article on the psychological issues on IBD refers to the need for appropriate coping strategies and good adaptation in order to deal with the symptoms of IBD and its psychological impact, yet fails to define what good adaptation entails. This notion was also elaborated upon in McCormick et al.’s (2012) qualitative study on the experiences of patients with chronic gastrointestinal conditions where one of the main themes that emerged was that of ‘adaptations: learning survival skills’, but again no clear exploration of this notion was given. Therefore, this study aims to address this gap in the literature by exploring the notion of adaptation in patients with IBD. In particular, the study focuses on their lived experience from diagnosis to the present and observing whether there are adjustments in the ways in which these patients think, feel and behave with regard to their illness over time and, if so, what particular aspects of these domains change.

Method

Design

A qualitative design with in-depth, semi-structured interviews.

Sample

Participants were recruited via opportunity sampling from social networking sites, predominantly Twitter, as well as online IBD support forums by responding to a recruitment paragraph outlining the study. Participants were required to be at least 16 years of age, capable of providing informed consent, living in the United Kingdom and had been diagnosed with either CD or UC at least 18 months ago. Those UC participants who had undergone a colectomy and thus technically no longer suffered from the symptoms of UC were included as they still had to live with the effects and challenges of having surgery and it was felt this could still provide insight into the lived experience of IBD. In total, 22 participants were recruited upon which point saturation was reached: CD (n = 10 – 5 females, mean age = 28.2 years, range = 23–31 years; 5 males, mean age = 30.2 years, range = 18–39 years; mean time since diagnosis = 8.8 years. All were recruited from Twitter) and UC (n = 12 – 9 females, mean age = 32.1 years, range = 19–60 years; 3 males, mean age = 42.7 years, range = 36–48 years; mean time since diagnosis = 5.0 years. 5 recruited from Twitter, 6 from ‘Colitis UK’ forums and 1 from IBD forums on ‘Daily Strength’). One prospective UC participant was not permitted to take part as he or she did not yet have a confirmed diagnosis. No participants who stated their interest or took part later withdrew. All participants were given a pseudonym to ensure anonymity.

Procedure

Prospective participants were emailed an information sheet to describe the nature of the study along with an informed consent form that they were required to complete on their computer and return via email to the principal investigator if they were willing to take part. All interviews were conducted in English following a semi-structured interview schedule over the telephone at a mutually convenient time and were all carried out, audio taped, transcribed verbatim by the principal investigator and then stored securely on the University servers according to the Data Protection Act 1998. Telephone interviews enabled the recruitment of participants from multiple regions of the United Kingdom and also allowed the participants to divulge potentially embarrassing or intimate information from the safety of their homes and retain a degree of anonymity. Interviews lasted on average between 30 and 45 minutes and took place over the course of 3 weeks in March 2014. Once the interviews had been conducted, participants were granted the opportunity to ask any questions they had regarding their participation or reflect on their experience. All participants were also emailed a debriefing form to explain the nature of the study. Ethical approval was obtained from the University Ethics Committee.

Interview schedule

The same interview schedule was used for the CD and UC participants and was constructed by the authors. The first section of the interview covered the participants’ history with IBD, focusing on the genesis of their illness (How did this diagnosis come about?), transitioning on to their early reactions to their diagnosis (What were your initial thoughts and feelings about your diagnosis?) and enquiring as to any initial coping techniques, ending with how participants are currently dealing with their illness (How do you currently feel about your diagnosis of IBD? What factors have helped you manage your illness?) and a reflection on what the major changes have been over time, if any, with regard to how they manage their illness on an emotional, social and behavioural level. The interview schedule was piloted with two patients with IBD prior to the study.

Data analysis

The interviews were analysed using thematic analysis as it provides a ‘flexible and useful research tool, which can potentially provide a rich and detailed, yet complex account of data’ (Braun and Clarke, 2006: 78). Within this analytical framework, an inductive, ‘bottom-up’, approach was taken as our analysis was not based on any previous research into living with IBD, rather we sought to generate phenomenological data from which our themes could be developed. Furthermore, an essentialist theoretical perspective was chosen as our focus was on the experiences, meanings and reality of the participants. The interview transcriptions were each read through twice in order to become familiar with the data. Salient information that related to the lived experience of IBD was then coded and collated and sorted into a number of prospective themes that seemed to represent the data. Themes and subthemes were adjusted to include only those that could be supported by illustrative quotes from the interviews.

Results

The participants described living with IBD in terms of three core themes, namely, ‘making sense of the illness’, ‘impact’ and ‘feelings’. Transcending these was an overarching theme of uncertainty which cut across all aspects of their experience. These themes will now be described with the use of illustrative quotes. They are then finally discussed within the context of the notion of ‘the new normal’.

Theme 1: making sense of the illness

Participants described the myriad of ways in which they endeavoured to make sense of their diagnosis of and life with IBD. In particular, they mentioned ways they experienced internal conflict over the cause or trigger factors of their illness and subsequent periods of particular ill health, a lack of understanding and knowledge as to what their diagnosis entailed and the misperceptions of others as to what the participants were experiencing and the nature of IBD.

Cause and conflict

Participants portrayed their difficulty in dealing with the ambiguity of their illness genesis or exacerbation in a number of ways, with some suggesting an inner conflict that perhaps the development of their illness was of their own doing or preventable. For example, one participant said,

You just want answers and a lot of people ask well why I’ve got it and nobody (medical professionals) can ever tell you why you’ve got Crohn’s disease, if it’s your lifestyle, your diet, it’s hereditary, you don’t know. (Daniel, 39 years, CD)

Other participants had their own theories as to what may have caused their illness. For example, Janet believed her illness precipitated as a result of stress stemming from a prior abusive relationship:

At the time I was being beaten up by my boyfriend, like a violent relationship, so I was like really, really stressed out. But I don’t know, like science obviously speaks differently but I think things like that that’s probably … I don’t know I never had any issues before and that’s like the only time I got ill and then like that’s, well I think that’s what triggered it off anyway. (Janet, 29 years, CD)

Lack of understanding

A sizeable number of the participants also described how they were oblivious or dismissive as to what their diagnosis meant in terms of its potential severity and how the disease may impact their future. Phrases such as ‘I didn’t know anything about it’ and ‘I wasn’t educated in it that well’ were common. For example, one participant admitted,

I suppose in the early stages I thought it was a bit of a oh nothing to bother about, no worries and all that lot. Nothing really to be concerned about. To now I look at it as a serious, serious illness, ya know, and it’s not something to be taken lightly. (David, 48 years, UC)

Early treatment success also seemed to lead some participants into a false sense of security as to their prognosis:

When I was initially diagnosed I didn’t really think much of it which probably sounds terrible … And because I think the treatment I was put on initially worked so well and I went into remission I then just didn’t really think of it. (Jackie, 29 years, UC)

Misconceptions

The final hurdle participants faced in terms of making sense and coming to terms with their illness was dealing with the misconceptions of others as to what IBD entailed for the participant. The majority of comments were received from family members. One participant described her disappointment at her initial lack of family support for their downplaying of the severity of her diagnosis:

When I first came out of hospital the last time my nan just called it a dicky tummy and I had IBS, so I felt pretty upset about that because that made me feel really like they didn’t understand what I went through, and they should’ve because they’re my family. (Andrea, 21 years, UC)

Meanwhile, a large number of participants simply stated a lack of public awareness in relation to IBD and the difficulty in living with an ‘invisible illness’ that is not instantly apparent to others:

It’s only when you tell people that you’ve got Crohn’s disease and the fact that nobody had a clue, oh what’s that then, you know what I mean, that’s the sort of response you get, and nobody actually thinks there’s anything wrong with you, and it’s one of those invisible illnesses that you look OK on the outside but on the inside is a totally different story. (Daniel, 39 years, CD)

Theme 2: impact of IBD

All participants regardless of disease severity described how IBD had impacted their lives on multiple fronts, encompassing a plethora of complex physical, social and psychological obstacles.

Physical

With regard to the physical challenges of IBD, a number of participants spoke generally of the adversity of having surgery and experiencing sometimes numerous hospitalisations. The challenge of overcoming the physicality of surgery was apparent in one participant’s account who stressed the ‘physical toll’ it had taken:

The first surgery, ya know, it’s a massive thing and it’s a big, physical toll on your body and, ya know, the recovery period is quite hard. It’s like a hard recovery to go through. (Jackie, 29 years, UC)

A number of interviewees also described their struggle with combating the fatigue that is predominant among IBD sufferers. However, of particular note was one participant’s explanation of how even in remission their struggle with fatigue was ongoing:

I mean I know that I’d rather be tired and in remission than be flaring, it just seems strange that the fatigue has been more of an issue when I’ve been in remission. (Diane, 28 years, UC)

Social

With respect to the social issues faced by the interviewees, these too were multi-faceted. One area it affected in particular was the participants’ ability to maintain relationships with their partners, with one participant describing how it was affecting their intimacy:

I’ve got to prioritise what I spend my energy on and at the moment I’m spending my energy on my job rather than my partner. And most of the time he’s fine about that, but occasionally it can cause an argument. (Diane, 28 years, UC)

Further to this, participants almost unanimously expressed a difficulty in keeping up with social events, finding it difficult to commit due to the fear of potentially embarrassing symptoms in public. One participant mentioned,

I used to enjoy going out for a beer and all that with the lads and stuff like that, but that sort of put me off going out because of the, you know the situation you find yourself in wanting to find a toilet if you need to go to the toilet, and you know just going into the unknown. (Daniel, 39 years, CD)

However, despite the illness putting a strain on these relationships, one participant voiced the opinion that was shared by a number of interviewees in that their illness strengthened the bonds with their closest friends:

I think if anything those friends have become closer because I think they feel I’ve shared a lot more with them now because they know so much about it and they know how hard it’s been, they’ve been there in the hospital and wherever else and they’re still with me when I feel terrible so they see it face to face. (Amy, 30 years, CD)

Psychological

With regard to the psychological impact of IBD, the majority of participants complained of a common dilemma in dealing with a compromised self-identity. Specifically, the interviewees expressed grievances of being treated differently to others. This desire to be treated normally was made clear by one participant who said,

I don’t want people to adapt how they are with me just because of my illness, I’d prefer people just to sort of treat me as they always have. (Elizabeth, 31 years, CD)

One participant explained how her struggle to avoid being consumed by her illness was ongoing:

I still find it hard to talk about how I feel and I struggle to find a fine line between constantly complaining or constantly talking about it and not talking about it at all and I still don’t think I can get there quite yet. (Amy, 30 years, CD)

However, some interviewees had seemingly managed to distance themselves from their illness label, one participant doing so through the help of a counsellor:

It made me feel like it’s not colitis and Andrea, it’s Andrea with colitis, ya know, I was always putting it like at the front of my mind when I shouldn’t have been, I should have been thinking of myself more. (Andrea, 21 years, UC)

Theme 3: feelings of IBD

It was apparent that there were three dominant emotions that encapsulated the IBD experience.

Anxiety

This was mainly displayed in the context of the initial fear and worry that the majority of participants alluded to in the face of their developing symptoms and upon diagnosis. This underlying angst was echoed by a large number of participants by the relief that they expressed upon realising they were suffering from IBD rather than bowel cancer. For example, one participant said,

I remember at the time thinking this is really weird I’m so relieved, and I was crying and I said to him I’m not crying because I’m upset, I’m crying because I’m just so relieved that you haven’t told me I’ve got cancer … the fact that it’s a chronic illness didn’t really sink in I guess for a few months. (Gemma, 41 years, UC)

Being overwhelmed

Specifically, this notion describes the helplessness that many of the participants displayed. The interviewees explained how the chronicity of their illness was an aspect of living with IBD that was difficult to handle:

Sometimes I think it can get you a little bit down because you know you’ve got this disease forever and nothing’s gonna change, no cures. (Elizabeth, 31 years, CD)

For others, this helplessness was more pronounced, with one participant even mentioning feeling suicidal during a hospitalisation that had prevented them from attending interviews for a new job:

I was getting a bit tearful and I was actually thinking about the most convenient way to die even though I’d been through worse probably in previous years. (John, 30 years, CD)

Animosity

Finally, participants described the animosity they felt towards their illness, characterised by feelings of resentment and frustration. One participant expressed their resentment towards their CD in its entirety:

In terms of attitude towards Crohn’s I just hated it, I hated everything about it, I didn’t want to talk about it, I resented it and it was just a very negative attitude towards it. (Daniel, 39 years, CD)

Meanwhile, one participant expressed their resentment in the form of their jealousy of others who were not in their predicament:

There’s been times in the past when I’ve felt angry about it, I felt ‘why me’, when I’ve just felt jealous of anyone who doesn’t have to take medication every day. (Diane, 28 years, UC)

However, despite this overarching sense of animosity towards experiences of living with IBD, there were some participants who did state that they were happy despite their circumstances, as described by one patient,

I’m happy it’s happened and definitely in a weird way happier than I was … I don’t know if I was as happy as I was before I was diagnosed but I’m definitely happier than I have been. (Jason, 25 years, CD)

Overarching theme: uncertainty

Transcending these aforementioned themes was a sense of uncertainty which was particularly evident when the participants discussed the possible side effects and efficacy of treatment, apprehension associated with having surgery and the possibility of relapsing.

Side effects

Participants regularly expressed their uncertainty with regard to the possible side effects of their medications. The majority expressed general concern and trepidation over the cumulative effects that their ‘toxic’ medications could have:

I think that’s my biggest problem I have is all the medication, and how toxic they are. And the side effects that come with medication and you have to take another drug to counteract the side effects and there’s always in the back of my mind. (Megan, 32 years, UC)

The resounding majority of the participants’ concerns, though, surrounded their relationship with steroidal treatment, with many complaining of a cycle of remission and relapse when on steroids:

Had the first flare when I was diagnosed, was on steroids, came off steroids and flared again, and basically the first year after diagnosis was pretty much sort of flare, steroids, flare, not really remission, so that was pretty tough in terms of thinking well am I ever gonna get better. (Chloe, 33 years, UC)

Surgery

Another source of uncertainty was apparent when some of the participants discussed their thoughts on surgery. Some of the interviewees described how numerous surgeries had caused them to question whether it was worth it:

I’ve had lots of negativity with it, surrounding it, obviously I’ve had lots of surgery and after each surgery not working you kind of lose a bit of hope that it’s gonna ever get better. (Katie, 28 years, CD)

This also rang true for another participant despite admitting they were now ‘much healthier’:

For me this surgery was something that even though I did it I still sometimes think oh I wish I hadn’t done it. Even though now I feel so much healthier. (Jackie, 29 years, UC)

Relapse

Finally, uncertainty was evident when participants expressed foreboding over the possibility of relapsing. For the majority, the prospect of relapsing was associated with the potential for loss:

I get really, really worried about it because when I had that massive flare I literally felt like I lost everything, like I lost my job and I had to drop out of college and I had to stop doing all my drama classes and stuff and literally it just felt like the end of the world. (Rebecca, 19 years, UC)

The revelation by one participant who admitted not feeling ‘fully adjusted’ was particularly striking that even though they were aware of their rumination, it was difficult to overcome due to the fluctuating nature of their illness:

I don’t think I’m fully adjusted because I think you could have a flare that’s just totally different, you could have one that just knocks you for six and you’re ill for a year or something, so I feel pretty adjusted but I sort of feel conscious that I don’t wanna feel quite like that because that could all get knocked away. (Chloe, 33 years, UC)

The uncertainty associated with medication and surgery compounded with the ambiguity surrounding the recipe for remission, and the fact that some of those who achieved remission felt uncertain of how long it would remain, sheds light on the difficulty of dealing with this relapsing–remitting disease. Particularly interesting too was the fact that the most feared repercussion of relapse was that of loss rather than pain for example. Overall, this uncertainty among the sample portrayed IBD as an illness that is still challenging even during remission.

Final theme: the new normal

This previous theme of uncertainty was counterbalanced by our final theme of the new normal. Participants displayed key psychological, social and behavioural methods of coping by which they attempted to cope with their illness and overcome its uncertainty.

For example, some showed acceptance which involved a sense of letting go and accepting there may be obstacles in the future regarding their health but that they would be manageable:

I’m happy, I’ve accepted this is what I’ve got and this is how it’s gonna be so it’s generally fine … I was scared and upset for a long while, but as I say that comes and goes, it’s still gonna happen occasionally. (Amy, 30 years, CD)

Some participants also alluded to the need to be resilient in dealing with IBD, using phrases such as ‘I refuse to let it beat me’ and ‘just got to get on with it’. One participant discussed how he had to remain resolute in the face of his colectomy procedure to remove his large intestine:

I remember when they said they were going to remove it and I sort of, I thought you can either be upset about it and down or you can get on with it. (Ian, 36 years, UC)

Participants also spoke of the importance of developing relationships that engendered a feeling of a shared experience:

I’m a member of a few forums and you discuss things with other people and you read what other people’s problems are and you realise you’re not alone. (Malcolm, 44 years, UC)

Participants also almost unanimously spoke of the importance of endeavouring to live a normal life:

I have to still take child my out, still have to take him to activities and carry on as normal. (Emily, 32 years, UC)

By employing these coping techniques, patients with IBD attempt to resolve the uncertainty of their illness and combat, for example, the misconceptions of others as to what their illness means, and achieve an equilibrium that balances their previous identity of a ‘normal person’ with their new identity of a person with IBD living a life that is as normal as possible. Consequently, it is posed that the ultimate goal of living with IBD is to achieve a ‘new normal’. Indeed, participants alluded to the understanding that a normal life is possible but that perhaps it would not be the normal they had once known. In order to reach this ‘new normal’, it seems that one’s identity as a patient with IBD must be counterbalanced by encouraging one’s sense of self and identity as a person who manages a chronic illness as a part of their life rather than a patient whose existence revolves around this illness. This supposition is encapsulated by two quotes in which both participants suggest an acceptance of uncertainty and that regardless of the fluctuations in their illness they are living the life they now have and are determined to live it to the fullest:

I think it takes a long time to work out … well to just allow yourself to try and think about your life beyond having Crohn’s so when I’ve kind of sat down and thought about well I can still have a full life regardless, I can still do the things I want to do it’s just may be gonna be a little bit harder and it’s a big revelation. (Amy, 30 years, CD)

I live every day as it comes … as it gets thrown at me. There’s good days and bad days. I always try and set myself goals throughout so that I’ve got, however small, something to work towards, because I think if you get too wound up about what’s happening or what’s happened then you don’t move forward. But it’s like even after transplant there’s bad times, ya know, and it can happen out the blue still but you’ve got to enjoy the good times so that’s all I tend to do really. I don’t see my life as any other person. (Katie, 28 years, CD)

Discussion

This concept of the new normal finds reflection in notions such as that of resolution, adaptation and adjustment which is supported by, for example, the work of Charmaz (1983), who argued that patients with chronic illnesses experience a ‘loss of self’, as was demonstrated in this study. Patients however have agency in reconstructing their identities in the midst of illness and are thus able to redefine what it means to be, in this case, a patient with IBD but also the person who they were before diagnosis. As patients make sense of their illness and derive meaning through interaction with other patients, they may develop a new understanding of their illness (Blumer, 1969) and may alter their sense of self from a person living an abnormal life due to having a chronic illness to one who is living a new type of normal life with a chronic illness. It is also supported by Breakwell’s (1986) ‘identity process theory’ where it was argued that identity is dynamic and is altered through a process of assimilation–accommodation. In this process, the person assimilates new personal information such as values or attitudes as well as social information through interpersonal networks which adjust the existing identity structure, supporting once again the notion of an identity change in the current IBD sample from abnormal to a new normal. Finally, our hypothesis relates to ‘cognitive consistency theory’ since it argues that individuals are motivated to act in ways and have thoughts, values and beliefs that are consistent with their sense of self (Stryker, 1980). When one is unable to achieve this consistency, then cognitive dissonance occurs which motivates the adoption of behavioural and/or cognitive changes in order to realign one’s situations, behaviours, attitude and beliefs back in line with their aforementioned sense of self. This is true even if it requires the loss of a previously valued identity. This relates to the realisation of a number of interviewees that they were unable to cope physically in their current state compared to their life before IBD. As such, many accepted this fact with numerous participants reporting taking on a decreased work load and lowering the expectations and demands they put on themselves. This altered sense of self, in our case the ‘new normal’, may lower the cognitive dissonance the patients experience as there is less failure experienced when comparing to their previous notion of ‘normal’.

However, the study is not without its limitations. It is arguable that our deductions are based on a specific subset of patients with IBD due to our recruitment method. As participants were all part of online support groups, it is possible that certain aspects of adaptation that were raised, such as the importance of engendering a sense of shared experience through social networking, are not representative of patients with IBD who do not seek online support, thus bringing into question whether our notion of adaptation is transferable to all IBD patients.

Conclusion

To conclude, patients’ accounts of living with IBD centred around the ways in which they made sense of their condition, its impact on their lives and the feelings it generated. Permeating these experiences was an ongoing sense of uncertainty which drove patients to employ a range of behavioural, social and psychological coping methods in order to achieve a sense of a ‘new normal’ by finding an equilibrium between their lives before and after diagnosis.

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

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