Few events in life are as intrusive, disruptive and devastating as the onset and the continued effects of a chronic illness. A chronic illness challenges to the extreme all the areas of your life and of the lives of those who are closely involved with you: the physical, the emotional- psychological, the mental and the spiritual.
BEYOND THE PHYSICAL
Although there may be a physical illness with its diagnosis and explanations, the outer and inner experiences far surpass the realm of the purely physical, and therefore the required understanding, attention, assistance and coping skills have to also surpass the physical.
Your ultimate personal transformation will eventually take place in the area of your emotional life and soul life, but this can only happen to its fullest if the immediate physical needs are given their due care.
If you suffer with a chronic illness, you will find that it means, among other things, a radical change in the course of your biography. Yet, in many ways you are still the same person. The illness may have robbed you of certain abilities, an expected future, even of a job and possessions. Yet, you are still you, with your needs, your likes, your ideas of fun and of purpose, and with your dreams. So how to integrate this ‘new’ state of affairs into the life of the person you are, but who is no longer living a life the way you know how?
The following summary (based on the work of chronic illness and trauma specialist Patricia Fennell) of clearly distinguishable phases of chronic illness and supportive questions might help you find some direction.
THE FENNELL FOUR-PHASE MODEL
Phase 1: Crisis
Moving from the actual onset of your illness to an emergency period, and when your world feels turned upside down, is called the crisis phase. In addition to unfamiliar and troubling physical symptoms, you are burdened by feelings of fear, confusion, grief, anger, and more. The task facing you, your family and carers in phase one is to contain the crisis.
Self-help: To determine which issues you need to address in this phase, and the steps you need to take to contain the crisis, please consider the questions below:
- How can I build a support team to support my physical, emotional, relational, and spiritual needs? What are those needs? Who do I want on that team?
- What is my activity threshold right now? What needs to go in my schedule, so that I can establish priorities and focus on what’s most important — my health?
- What are my responsibilities and other people’s expectations of me? Could there be some difficult conversations I need to have to clarify and establish appropriate boundaries for myself so that I can contain the crisis?
Phase 2: Stabilisation
In this phase, your symptoms ‘level out’ so to speak, and you may be tempted to return to the old you. This understandable need and attempt to revert to old ways of behaving before you got sick however, is likely to lead to relapse and frustration. The task in the phase of stabilisation is to begin to find a new foundation and restructure your life around your new needs, (in)abilities and your support structure.
Self-help: Please answer the questions below to determine what tasks you need to address:
- What daily and weekly activities do I need to integrate into my life so I can live a fulfilling and significant life?
- Which possible past traumas and emotional issues related to my illness are presenting themselves for me to address so that I can free up emotional energy? Do I want the assistance of a therapist in working through these issues?
- What are my values? Are they values I still believe in or are they things others expect me to value? How can I restructure my life around my values?
Phase 3: Resolution
By phase three, you’ve begun to recognise you can no longer be the person you once were. But recognition is not acceptance. This can be a devastating inner conflict and lead to a ‘dark night of the soul’. Your goal in phase three is to develop a new, authentic self and to rebuild a meaningful life. The biggest step in this process is to come to an inner acceptance of your loss, as well as of your current situation. This is a delicate phase, where the question of meaning and purpose could be struggled with. Self-compassion here is the key that opens the door to a new sense of meaning and purpose.
Self-help: Consider the following questions to help you decide on your next steps:
- Is the mourning for my lost self complete so that I can move forward, or do I need more time or outside help to facilitate this process?
- What activities and interests brought joy to my heart as a child and young person? Which of these activities do I want to explore and develop?
- Am I still able to work? If so, what type of employment is reasonable given my physical and emotional challenges? Do I need to change careers? Work part-time?
- What do I need in order to find a new sense of meaning and purpose in spite of my handicap, or maybe even because of my handicap?
Phase 4: Integration
You are now able to integrate some appropriate parts of your old self from before the illness to who you are now. Your goal in this phase is to continue finding ways to express the ‘new you’, to participate in significant and meaningful work or activity, and to place your illness experiences within a larger spiritual framework. Your goal is also to chart a course for your future and to build a life in which illness is only a part.
Self-help: Answering the following questions may provide insights as to how you can meet the potential of this phase:
- How can I deepen the work I’ve begun in phase three?
- What creative and spiritual activities can I pursue to support my personal development and to find meaning?
- How can I avoid isolation and expand my social horizons? Are there certain beliefs or inner resistances I need to let go of to enable me to do so?
Your chronic illness severely affects every area of your life and creates loss for you and those you love. But that’s not the end of the story. You can transform your illness experience if you understand the phases associated with chronic illness and learn how to move through them.
Yes it is difficult, but possible, to rebuild a rich and significant life. You were made for purposeful living – not just ‘surviving’. That possibility changes, but always remains. This may well be one of the deepest mysteries of our human existence: to transcend physical life itself by finding meaning when it appears to be most missing.
- Fennell Patricia, A. Managing Chronic Illness Using the Four-Phase Treatment Approach: A Mental Health Professional’s Guide to Helping Chronically Ill People. New York: John Wiley and Sons Inc., 2003.
- Fennell Patricia, A. The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life. Oakland, CA: New Harbinger Publications, 2001.