I was flipping through a parenting magazine the other day while waiting for my daughter to finish speech therapy when the term “goodness of fit” caught my eye. I remember this term well from my graduate school days. Goodness of fit is the degree to which a child’s temperament matches the demands of his or her environment- mainly through parenting. In other words, are the child and parent a good fit for each other given their respective personalities and emotional responses?
It got me thinking about the different kinds of chronic illness and their “personalities”, if you will. Why is it some individuals become even more resilient after a diagnosis while others watch their world crumble? Are some chronic illnesses better suited to us than others?
Let me explain.
We obviously have no choice in how our illnesses emerge, the form they take, with what intensity they occur or even how long they last. It is, however, very helpful to look at our illness characteristics in order to learn how we might co-exist more peacefully.
The onset of an illness can be either gradual or sudden.
Examples of illnesses with gradual onset include arthritis, some forms of muscular dystrophy, chronic lung disease and Parkinson’s disease. Individuals with these diagnoses are able to adjust slowly to the changes happening to their bodies. Many people are more suited to gradual change – they like a slow and steady pace that is consistent with their style of coping.
A sudden onsetrequires crisis management skills when you’re fine one day and your world is turned upside down the next. Some people are simply better equipped than others to cope with sudden change. They’re able to tolerate a high level of fluctuating emotions, solve problems quickly and efficiently and rally help from a wide circle of support.
The course of an illness can be progressive, constant or relapsing in nature.
Limb Girdle muscular dystrophy is an example of a progressive disease, meaning it’s always present and increases in severity over time. Individuals with progressive illness need to organize themselves around a degree of uncertainty and be prepared to keep adapting in order to keep pace with the changing requirements of the illness.
An illness with a constant course is one in which an initial event occurs but then stabilizes. Examples include stroke, heart attack, traumatic brain injury, amputation or spinal cord injury with paralysis. After an initial period of recovery, there is a clear-cut loss of functioning that is stable and predictable over time. Once the individual learns how to manage the disability, s/he can plan for the future without the constant uncertainty of a progressive illness.
Illnesses that are relapsing or episodicin nature alternate between stable periods with a low level or even absence of symptoms with periods of flare-up. Examples include inflammatory bowel disease, asthma, migraine headaches, multiple sclerosis and fibromyalgia. Not knowing when the next flare-up will happen or how severe it will be can be especially draining for a person. In a sense, they are always on call for the next crisis. And when that crisis comes, routines, roles and responsibilities fly out the window until the flare-up has passed. This type of illness requires a great deal of flexibility for both the individual and their families.
The outcome of an illness can take the forms of nonfatal vs. shortened life span or sudden death vs. fatal.
When diagnosed with an illness, the first thing most people want to know is if their disease is fatal or whether they can expect a shortened life span. Many doctors hesitate to answer that question as two people with the same illness can have very different experiences and outcomes. All chronic illnesses potentially involve loss of bodily control, key aspects of one’s identity and intimate relationships. For those with life threatening illnesses, loss of control entails even greater consequences – death and the permanent loss of relationships.
Most people set priorities in their life as a result of how they view their prognosis. Some helpful questions to assess your beliefs about outcome include:
- What has your doctor told you about your prognosis?
- Do you think your illness can or will shorten your life? If so, when do you think this could happen?
- Do your views differ from what you have been told by your doctor?
- Is there agreement about the prognosis within your family? If so, how are differences in opinion handled?
- If your illness can be fatal, how does this knowledge affect day to day family life? Who talks with whom about it? Who does not and why?
Incapacitation due to an illness can take the forms of none vs. mild or moderate vs. severe.
All illnesses shake up a family whether you’re dealing with impairment in mental functioning (as in Alzheimer’s disease), movement (as in stroke with paralysis or multiple sclerosis), or immunity (as in chronic fatigue syndrome or fibromyalgia).
It’s the level of incapacitation however, that dictates the degree of stress faced by the individual and his/her family. The combined mental and physical impairments of a person with a stroke require greater changes in family roles than someone with a spinal cord injury whose mental functioning stays the same. Some chronic diseases such as hypertension, ulcers, diabetes, osteoporosis, thyroid dysfunction, or migraine headaches cause none, mild or only occasional incapacitation.
The timing of incapacitation is also a factor. For illnesses, such as stroke or spinal cord injury, incapacitation is often most severe at onset and wields its greatest influence at that time. Incapacitation at the beginning of an illness reveals a family’s coping style and skills like nothing else.
In progressive diseases, such as multiple sclerosis, rheumatoid arthritis, or dementia, incapacitation tends to be an increasing problem in later phases of the illness. This allows a family more time to prepare for anticipated changes.
As stated earlier, we have no choice in how our illnesses emerge, the form they take, with what intensity they occur or even how long they last. The more uncertain the course and outcome, the more you must build in flexibility to your planning. The most important thing you can do is educate yourself as much as possible about your illness which will in turn help you learn to tolerate living with it.
- Adapted from Families, Illness and Disability: An Integrative Treatment Model by John S. Rolland, M.D.
© Copyright 2011 by Helena Madsen, MA, therapist in Gilberts, Illinois. All Rights Reserved. Permission to publish granted to GoodTherapy.org.
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