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‘Moving on’: the transition to living well with chronic illness

Debbie Kralik
Senior Research Fellow, School of Nursing and Midwifery, University of South Australia;
Director, Royal District Nursing Service Research Unit, Glenside, South Australia

Way Ahead 2006;10(3):4-8

Introduction

The purpose of this article is to describe the process of ‘moving on’ when living with a chronic illness or condition. The findings of a study based on daily email conversations between 35 women and 17 men who live with long-term illness and the researcher are reported. Conversations have taken place daily over a two-year period (2003–2005) using a facilitated, private email discussion list.

A website that includes more detailed information about the background to the research and resources for people learning to live with illness, has been developed - www.unisa.edu.au/nur/arc_project/

The decision to utilise email came from our developing understanding of some of the consequences of illness that people living with chronic conditions confront in their lives. Challenges such as fatigue, pain, decreased socialisation and decreased mobility may limit attendance at groups or participation in one to one interviews. The use of email has enabled the collaborative process of data generation and analysis to occur concurrently and frequently, and has enabled us to research alongside people living with chronic illness to describe the processes involved with ‘moving on’ or transition. This study has reinforced electronic discussions as one research method for gaining understandings longitudinally.

Transition encompasses people’s responses during a passage of change. Life and living involve transitional processes. A transitions approach to disruptive life events such as chronic illness creates a focus on what is changing, how we experience those changes and how we can respond. It is not a focus on the illness or disease.

Times of transition can be very difficult periods in people’s lives. We experience transition when one chapter of our life is over and another is beginning. A condition such as MS sometimes creates this notion of forced and disruptive change to our lives.

“Whilst I cope most of the time with the pain of multineuropathy and a few other things, I am still trying to come to terms with the fact that my life in many ways, revolves around how to cope on a daily basis with my pain.”
Denise

“What energy I have I use in trying to get my life in order again.”
Andy

When we experience transition, we look for ways to move through the turmoil to create some order in our lives by reorienting ourselves to new situations. Transition may also provide us with the opportunity to review our life, get rid of some old baggage and find new ways of living. It gives us a chance to reflect on past experiences, try some new things, and engage new relationships, new thoughts, views and concepts. Transition can involve a lot of trial and error, or discovering new ways of living, doing and being.

“It has helped me to recognise and understand things that have happened to me… situations that I haven’t acknowledged.”
Jude

When we go into a period of transition, who we are, what we value, what we want and where we go is often not known until we give it a go and try it out. Transition really is a process of discovery. It is also the fertile soil in which we can plant the seeds of our new future.

Method

Following approval for the study from the University of South Australia Human Research Ethics Committee, and consent being obtained from participants, we convened an email discussion pilot group with six women and three researchers. Participants’ were invited to join the study through self-help organisations throughout Australia. The research was not specific to a medical diagnostic group, but rather relied upon the participants own construction of illness and the way it impacted upon their lives. Participants had diverse medical diagnoses including chronic fatigue syndrome, psoriasis, fibromyalgia, leukaemia, MS, arthritis, chronic pain, cancers and lymphoma. Common illness symptoms that people were learning to deal with included fatigue, anger, grief and loss. Their response to the illness experience was a strong desire to move on.

During frequent email conversations, we emailed about things happening in our everyday lives. People shared their life stories about living with chronic illness. Stories told often persuaded people to revisit their own stories as new understandings emerged through listening and reflecting on the lives of others in the group.

Findings

The construct of ‘moving on’ contained seven themes:

  • knowing one’s responses to illness;
  • developing inner conviction;
  • refraining from making comparisons;
  • prioritising what is important;
  • sharing stories with others;
  • awareness of shifting one’s self identity;
  • in tune with the process of learning.

Knowing one’s responses to illness

Understanding the issues impacting on one’s life and knowledge about one’s response to illness facilitates ‘moving on’. Information needs fluctuate throughout the illness experience. What is confronting today may not be as confronting tomorrow and may not even be relevant in our lives the day after.

“It’s not the most blokey thing to do, but yes I cry at times (just don’t tell anybody). Part of the process involves realising that we are undergoing significant changes in our lives and that it is normal to have these feelings.”
Andrew

“…for me [moving on] has been an ongoing process that just seemed to happen. As day to day I grappled with the experience of illness as it passed through different stages I didn’t realise it then but I was moving on to an ordinary life. All of that soul searching, relationship problem-solving, being creative about how I do things, listening to other women’s stories and words, reading and researching aspects of illness, reflecting on my reactions to illness and how this fitted in the context of my overall life, were moving me to a point where I could feel ordinariness about my life. The knowledge that I had succeeded at managing and coping with even the most difficult aspects of illness gives me confidence that whatever happens I will be OK...I can relax and enjoy the ordinary parts of life while doing what I need to take care of me.”
Kerry

Having the confidence to choose to disclose or not disclose was important. Disclosure means having to deal with the reactions of others and with potentially negative assumptions about what the illness or disability means. Being able to choose which situations you will disclose in and how, results in a sense of being in control of personal information, and consequently protection of self. When talking about the way the condition is communicated to others Rita said:

“I’ve used ALL the labels. It depends who I’m talking to and if I need to detail specifics or just explain in simple terms. Sometimes I say I’ve got a skin “thing”, chronic or otherwise. I’ve used illness, condition, problem, disease and dis-ease and to tell the truth I don’t mind what is used to explain it. Seems to me the reaction to it is just the same, no matter what. ‘Oooooooohhhhh, does it hurt?’”
Rita

Developing inner conviction

Awareness of self involved identifying and acknowledging a new set of ‘rights’ or inner convictions. This was expressed as the right to express and experience fulfilment of sexuality, the right not to feel guilty about the consequences of illness, the right to care for and make one’s own choices, the right to expect that self management will be a fluctuating process, the right to be self determining about treatment decisions. Emma identified that she was involved in a fluctuating process of learning to be liberating:

“For years I saw my inability to accept my life as it is now as a character flaw; a shameful weakness of spirit. One day, suddenly realising that I would never completely accept being sick, I paradoxically reached my only true moment of acceptance. I accepted non-acceptance!”
Emma

Kerry expressed that for her, developing an inner conviction involved:

“…getting in touch with one’s personal power as an individual in the world. For me in the earlier years of illness I felt pretty powerless and meek...the illness had rocked me. I accepted a lot of things I wouldn’t accept now… especially in the way the medical profession treated me, but as my life with an illness became more ordinary I felt I could reclaim my power as an individual and could have some expectations about the way others treated me.”
Kerry

Connecting with others was important to facilitate ‘moving on’. However, these relationships were chosen with care.

Refraining from drawing comparisons

‘Moving on’ is refraining from drawing comparisons. This may be setting aside memories before illness intruded. Emphasised here is that no comparisons are made between now and then, or between what was possible and what cannot be done now.

“What has helped me to move on after my transplant is that I have come to realise that I am embarking on another stage in my life and to fully enjoy and appreciate it I have to open my senses and mind to new adventures, interests and experiences and not to dwell in the past. What’s done is done and I cannot go back in time and change what has happened.”
Julie

“I don’t relate much to the person I was because I am so different now ... in the beginning I was constantly comparing, but I think as I have redefined my identity that it has become easier. It has taken me a while to redefine who I am as a woman living with chronic illness, but I think it has been very important. The way I have developed life alongside illness reflects who I am now and I draw from that in knowing what I am about. If someone asked me how to overcome the desire to make comparisons I would say reflect on who you are now and what you like about you ... develop your life and networks around your interests ... be out there in the world interacting meaningfully with others ... make your life something that you want to own.”
Kerry

It seems futile to try to measure up to the person prior to illness. Competing with one’s previous standards is dismissed.

Prioritising what is important

‘Moving on’ is a process of prioritising what is important. This means understanding the impact that people and events have on daily lives. Whilst it is not easy to change the impact, being aware of what is important helps to create a sense of ordinary about living.

“Once I had really accepted that I could well go on deteriorating, then it became more and more important to get the very best out of today, and not spoil that by grieving about what tomorrow might bring. A sort of ‘What I have today may be the best I’ll ever have, so it’s important to savour it.’”
Frankie

Everyday decisions about what will and will not be done become less threatening and the energy is invested into allowing priorities about wellbeing, needs and enjoyment to inform the decisions. These priorities are formed on the basis of past experience and consequent learning.

“Once I was hell bent on accepting invitations and cooking dinner for friends just to prove my life was still normal. It wore me out and I suffered for days afterwards. I got sick of having to recover from these events. Now I have learnt to choose what I will and will not do. I decide what will provide a quality of enjoyment without compromising wellbeing. For example, I will go to a restaurant for dinner with friends rather than cooking it and I will consider whether I accept invitations in terms of the significance of the experience it offers and my needs. I don’t attend things for the sake of being out there.”
Kerry

Identifying and being aware of priorities forms part of the new image of self and the reclaiming of a sense of control in one’s life. An awareness of priorities that enable the management of illness as an ordinary part of life is self-affirming.

Sharing stories

‘Moving on’ can be facilitated by story telling, telling one’s own story and listening to the stories and experiences of others. Through story telling people experience being acknowledged and gain a sense of validation. As stories are related, reflection and sense making occurs.

“I think that the need/desire to tell our stories is just a stage. If we are lucky in finding the right listener/audience, then we can do it, gain from it and move on. The only people I’ve met who have a continuing need to talk about that bit of their past are CFS sufferers who feel very strongly that they were badly treated by the medical profession and who are still stuck in old anger. They have a burning desire that the people involved should apologize to them, which is hardly likely to happen. So let’s talk about today, how we are coping with today, and how we see our tomorrows shaping.”
Frankie

Anger about past experiences can block the process of transition. Telling the story once is not enough. It is suggested that transition means leaving the past behind and moving forward.

Shifting self identity

‘Moving on’ involves understanding the shifts in the way women see themselves. The experience of illness may be the impetus for shifts in self-identity. When things are not as they were, women are forced to review past present and future images of self-identity according to their changed situation. Perceptions of self shift as women relinquish past aspects of self that are no longer meaningful and incorporate illness related changes and challenges into a new image of selfidentity. For some it was empowering when they realised they had made progress. Status, position, the social role of men and women and the way in which these social placements signify certain things to others permeate the experience of identity. These are markers by which the self is identified, which may shift as a result of chronic illness. Others make judgements and assumptions according to these markers and impose identity labels on the self.

“…moving on is facilitated by caring friends and family. My experience is that people close to me who have accepted the changes in my body and lifestyle with ease, and with lightness, have allowed me to feel more comfortable about the way I am now. I am extremely lucky in having a very supportive immediate family - however I have felt hurt by members of my extended family and some friends who seem utterly incapable of accepting illness as something normal that just happens to some people.”
Emma

Frankie reveals that identity is no longer a passive bestowal of another’s judgement on herself, rather she has turned it around:

“I have found that it is always worth checking up on what other people do or don’t know, and then filling in the gaps in their knowledge. I can’t expect them to understand what I haven’t told them. We all want the people around us to understand about our illness and how it affects us, but I have learnt that it is worth thinking about this in a more specific way. I now try to think about one particular person. What is it that I feel I am not getting from that person because of their lack of understanding?”
Frankie

‘Moving on’ is a process of learning

‘Moving on’ is a process of learning. This means learning about our responses to illness and the boundaries that illness place upon everyday life. Sometimes, it is important to challenge those boundaries to see if they still exist, or challenge them because there are events in life that are important to us. This dynamic process of learning signals the need to maintain a balance between doing what is important for enjoying life and accommodating needs. Learning to identify what needs are and being prepared to make changes to accommodate them is important to ‘moving on’.

“I feel that I’ve done my transition and come out the other side. The illness is still very much a part of my life; it restricts me in many ways, but that’s something I can live with. My mother used to say that the greatest freedom that anyone can achieve is within the confines of some sort of discipline, something like ‘stone walls do not a prison make, or iron bars a cage.’”
Frankie

“I remember getting to a point where I realised I was finished with suffering pain and discomfort just to be able to do things that I enjoy and that other people take for granted. Once I faced the fact that I needed support with mobility in order to keep doing things I wanted to, life became much freer and flowing. The energy I had expended struggling to keep walking independently was now freed up to invest in other aspects of living.”
Kerry

‘Moving on’ means understanding the confines of illness and its acknowledgement is liberating. Rather than being a constraining experience, this was seen as maintaining or reclaiming a sense of control in life. The reconstructed self accommodates the reality of living with chronic illness in a way that preserves a sense of dignity and value.

Discussion

‘Moving on’ was often referred to in group conversations as an ongoing process that evolved as the person continued to meet the challenges that living with a chronic illness presents. Our group conversations reflected a reconstruction of their selfidentity in a way that enabled a sense of control and purpose in life. The task of re-interpreting one’s self and situation to be meaningful and valued alongside illness and its consequences, is central to the process of ‘moving on’.

Awareness of self seems to be central to other learning that enabled participants to find ways to incorporate illness as part of their lives. Changes in perceptions and priorities, altered philosophy and increased self awareness appear to lead the individual toward a position of reclaiming a sense of control and value as a human being. In these people’s stories we see evidence of these learning processes and a strong sense of self was expressed. These appear to be important themes to the ‘moving on’ process and a worthwhile focus for support and assistance provided to people living with chronic illness.

It is also clear that that the influence of interactions with others appears to have a significant impact on the ongoing learning process. The attitudes and responses of family, friends and others played an important role in the women’s perception of self and the potential for living well alongside illness. This included the responses of health professionals who are seen to be in a prime position to provide support for the ‘moving on’ process.

Implications for health practice

Understanding illness transition offers a framework that will enable health workers to move beyond the biomedically orientated concepts of health practice, towards a holistic approach to the provision of health care. Health workers are in a position where they may make a difference to women who live with chronic illness. Although the meaning of illness was different for each person, the process of reflecting, sharing and formalising their illness experiences helped to reveal the contradictions and conflicts within their day-to-day lives. Respectful interaction with a health professional conveys a strong message to the individual with chronic illness that he or she is a valued human being and contributes to the reconstruction of a valued self-identity that has been identified by the women as essential to ‘moving on’. Relationship building, as a means for mapping context and identifying values, dealing with difference and miscommunication, is the first step.

Conclusion

Transition or ‘moving on’ is a complex process that involves the redefining of self in the context of living with chronic illness and finding meaning to the consequent changes to lifestyle. This reinterpretation of the life-world enables the preservation or reestablishment of one’s dignity and value as a human being. It is an intense process of personal development, of questioning and finding answers, of challenging long held perceptions, of responding to developing awareness and insights, and of taking action to make confronting changes. It appears to be a unique journey for each person depending upon her particular situation and context. The attitudes and responses of others can clearly enable or constrain this process. Therefore health professionals can play an important role in supporting people to work though the challenges of transition.

A changing body

I know I am staring and at risk of rudeness
But today again in the mall
My eyes are drawn to a group of women
Perhaps twenty years older than my forty three
Intently I watch as they walk arm in arm
Their limbs moving freely with strength
No falter in their step, no stagger in their gait
No hint of pain on their faces as they laugh and talk and enjoy…
I remember and feel the confidence of movement
In my own dance through life prior to MS
The joy and the pride I felt in a strong fit body
That is now a prison of pain and discomfort.

Kerry

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