Segment Two: The Chronic Illness Trajectory
Introduction
There are two important notions in relation to understanding your response to and your management of your chronic illness:
- An over-time trajectory and
- A wellness: illness shifting-perspective model.
The Trajectory Framework Of Corbin & Strauss
For a full discussion of the work of Juliet Corbin, RN, PhD and Anselm Strauss, Ph.D. - both from the School of Nursing at the University of California, San Francisco - you may consult the references at the end of this chronic illness unit. Their key concepts (properties, types of work, biography, and phases) follow.
Properties. There are two properties of an illness trajectory - duration and work. The duration of a chronic illness is the life span of the individual - but that is an unknown which varies person to person - which only serves to add to the uncertainty of the disease. The work of the trajectory involves all of the activities, behavior, effort and energy required to deal with not only the illness itself, but also its necessary treatment and management strategies.
Types of Work. This notion of a chronic illness being "work" is further defined into 5 different types, depicted on the slide below:
Each type of work has its own unique component.
Comfort work is the work you must do to keep comfortable enough to function. This may include specific exercises, application of heat or cold, stretching, keeping warm, etc. Whatever it takes for you to be pain-free and comfortable.
Of course your usual life work must go on as well. This is whatever it takes to maintain your family life, your work life, your student life, and you relationships with family, friends and community.
Clinical safety work involves adding the things you must do to keep your illness under control and avoid crises. This may involve regularly taking medications, regular visits to your physician and/or clinic, daily blood and/or blood pressure checks, meditation, prayers, etc.
Specific trajectory work involves keeping your mind's eye on what your future might hold and planning accordingly: should you buy long-term-care insurance?? Should you sell your large family home and move to a condominium as your illness progresses? To a retirement community? To assisted living? How will your chronic illness affect your future and how should you plan ahead for that? Who will be there and what will you need in times of acute flare-ups? Crises?
And, finally, you have to work on your "biography" - who am I now that I have this illness?? How is this going to change me as a person?
Are you tired, yet, from all of this work?!? Yes; that's what persons with chronic illness frequently feel: just tired out from the thought of it all!
Biography
In the trajectory framework, the work of biography gets additional special notice. This is the re-shaping and re-molding of your self-concept. Now that you have a chronic illness your concept of yourself has changed. You have a new life "story" to write.
Accepting that you are now different and will relate to others differently is not easy - but - it is the necessary first step in building the new you.
This re-shaping of your identity, away from who you were before and toward who you now have become must take in all of your experiences with the disease itself, with the health care system, and you new ways of relating to friends, colleagues, family and even strangers. Who are you and what is your life now like?
Phases
Finally the Corbin and Strauss trajectory model of chronic illness recognizes that your illness will have phases.
You have had your diagnosis and onset of your disease.
You will most likely now enter a stable phase where you maintain your everyday activities - work, school, family and fun.
No doubt, you will unpredictably have unstable periods where you are unable to keep your symptoms under control and your life becomes disrupted while you work to regain stability.
You also will have acute phases where severe and unrelieved symptoms, and/or the development of complications necessitate hospitalization or bed rest to bring your illness back under control.
You will even have sporadic crisis phases where a life-threatening episode occurs where emergency services are necessary.
From these periods of instability, acute flares and crisis, you will work hard to achieve a comeback phase where you gradually return to an acceptable way of life.
However, with every chronic illness, at some point, you will enter the downward phase where your gradual physical decline is accompanied by increasing disability and continuous alterations in your everyday life activity.
As the downward phase continues you will enter the dying phase where you will have to relinquish your everyday life interests and activities, bring closure to your biography, let go and die peacefully.
Hence the phases resemble:
Onset - stability - instability ( with acute and/or crisis phases) - Comeback - return to stability - instability - comeback - return to stability. . . until eventually you cannot comeback from a crisis and you enter downward. . .then dying phases.
Though, most certainly, we will all die, those with chronic illness will face the trajectory phases -- where one jumps from stable to unstable, from stable to crisis, from stable to acute, requiring a phase of comeback to get stable again. All of this requiring an inordinate amount of "work" and "biography" adjustment.
Hence, the major ideas of a trajectory model of chronic illness are depicted below:
Chronic illness is no fun!
The Shifting Perspecitves Model
Barbara Paterson (2001) questions the idea of a linear progression through the Corbin and Strauss trajectory phases. Rather, from her review of 292 qualitative research studies, she identifies the more important idea as being whether the illness itself is in the foreground of the person's life, or whether the person lives life basically as a well person. Both illness in the foreground and wellness in the foreground have advantages (adaptive at times) and disadvantages (maladaptive at times).
At this point, you should go to the link below and read Paterson's article.
Paterson B. A. (2001). The shifting perspectives model of chronic illness. Journal of Nursing Scholarship. 33(1) 21-26.
ADD HSL Ereserve Link
A few highlights. . .
Do you have a new understanding about why people with chronic illness may manifest behaviors that, at first glance, seem ill-advised? Like the Lee's with Lia, they may be simply trying to maintain "wellness in the foreground" - and denying the need for on-going medications.
Does it make sense that, at times, the cardiac patient may become obsessed with her chart of daily pulse rates. . . illness is in the foreground?
Patterson suggests that we throw away our notions of acceptance and denial - and consider which phase the person needs to be in at this particular moment: illness in the foreground or wellness in the foreground. . . their perspective will match their individual social context and life events.
Trajectory and Perspective
Both the trajectory model and the shifting perspective model can inform health professionals who care for persons with chronic illnesses.
The trajectory model is best not considered as a linear, unidirectional activity. Even in the stable phase, either illness or wellness may be in the foreground and affect how a person manages their life.
Your Current Phase and Perspective
Return to your own chronic illness and imagine/decide:
1. What phase are you currently in?
2. What is in your foreground? Wellness or Illness?
3. Given your choices (above) of phase and foreground, on your next visit to your health provider, how should the nurse best greet you and assess your progress?
Email these 3 answers to Dr. Pierce:
spierce@email.unc.edu