Vijai P. Sharma, Ph.D
Short-term illness is "no sweat" for anybody, but, when someone develops a long-term severe illness, the whole family lives it. Everyone and everything in that family is affected.
We all say that the whole family has to adjust to the illness of a loved one. But the word "adjust" is deceptively simple. Using the corporate terminology, perhaps, it is more accurate to say that such a family requires, "restructuring, reengineering and redesigning" of all its members' routines, responsibilities, roles and relationships.
For example, an older sibling may have to assume new responsibilities such as for the household chores and taking care of younger siblings. A housewife may have to enter the world of work for the first time. Another spouse may have to do two jobs. A spouse might find taking more of the role as a parent than as a partner. Diagnosis! That strange sounding combination of syllables with indecipherable meaning suddenly thrusts roles on people they never prepared for.
A person who develops a long-term disabling illness loses, at least temporarily, his or her sense of self-worth. He or she must grapple with such emotions as the anger, depression, anxiety and grief over the loss and the change that the illness imposes.
A study by Sobel and Worden in 1982 on cancer patients identified the following erroneous beliefs or misconceptions that make successful living extremely hard to achieve:
1. "I need to be completely free of symptoms."
2. "People should treat me just as they did before I became ill."
3. "I should be able to do everything I did just before I became ill."
4. "My family shouldn't be inconvenienced or made to worry about my condition.
Here is one that I'd like to add: "My family should be able to read my mind and know what I want and when I want it and how I am feeling at any given moment."
In spite of all the treatment that is available for your illness, there will still be some symptoms of it for some of the time. However, you can learn to cope with them and reconcile with the resulting discomfort, pain and limitations. Don't quarrel with your illness or the world. Acceptance of the facts of illness helps to cut down on negative emotions.
Once people know you have an illness, their interaction with you will change. Getting aggravated about it increases anger and hurt. Most relatives and friends don't really know how to act around a person who has a severe illness. It's not taught anywhere. So, forgive them out.
Let the synergy of the family develop. Let your partner and children work in solidarity with you. Set a few positive goals to work on such as, acquiring the equipment to increase mobility, gaining the most current knowledge about the illness, or developing a family nutrition plan. People cope better with a problem when they have a sense that they are making progress in realizing an important common goal.
Some people don't want to tell their extended family about their illness. That is simply unfortunate because they may be missing out on the support their extended families can provide. However, it is better to not form specific expectations from your extended family. This is the advantage of having zero expectation from others: you have zero chance of being disappointed but some chances of being pleasantly surprised.
Following are some of the factors that limit or impair a family's ability to successfully adapt to a long-term severe illness:
1. Prolonged anger, sadness or other negative emotions related to the chronic illness.
2. Lack of information about the illness and unwillingness to gain information regarding how best to cope and successfully adapt to it.
3. Lack of effort on the part of the family members to communicate with one another and with the member who is chronically ill.
4. Unwillingness to seek professional help when indicated or, total dependence on the medical experts by assuming the attitude, "Your doctor always knows the best."
It is common for someone with a severe physical illness or their family members to feel that perhaps they are somewhat to blame for the illness. They may feel they have caused it in someway or that they could've done something to prevent it from happening. Such feelings of self-blame have to be resolved in order to work on the positive goals for the future.
Get past the stage of grieving over the sense of loss of control over your life. As you stop dwelling over the loss of what you don't have any more, you start gaining control of what you do have.
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Copyright 2001, Mind Publications
Dr. Vijai Sharma
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