Coping with Chronic Illness
Notes from a Lecture by Dr. Michael Vallis
NSAEHA Newsletter, December 1991

According to Dr. Michael Vallis, people who come down with a chronic illness have suffered a loss.  In many cases, they can no longer trust or rely on their bodies to do the things which they always expected to be able to do.  It is not uncommon for people to take a long time to accept their situation and begin to regain a positive perspective and lifestyle once again.  The psychological challenges that the chronically ill encounter during this transitional time and the healthy coping strategies that help people to deal with these challenges were the topics discussed by Dr. Vallis during a lecture sponsored by the AEHA on October 8, 1991.

During the lecture I kept saying to myself- “I wish I had heard this lecture a long time ago because it might have saved me a lot of grief.”  There was so much that Dr. Vallis said that I could identify with and many of this suggestions on how to cope were ones which I had learned the hard way without much help.  Nevertheless, it was still really nice to hear an expert tell me about my reactions and struggles with my illness.  It was also good to be reminded of the types of strategies which can be used to get through the rough times that I still experience.

The lecture was almost 2 hours in duration.  It was full of interesting insights with which most people in the audience seemed to be able to identify.  Hopefully, a tape recording of the seminar will soon become available to other members through the AEHA library.  The following are my interpretations of some of the points made during the talk:

1. It is the unfortunate burden of the victims of chronic illness to educate the   non-victims. 
People in general want to believe that illnesses are short term and acute.  In other words, they expect people who get ill to also bounce back and get better within a reasonably short time period.  If the ill don’t get better then they are often seen as being hypochondriacs or as having other psychological problems.  This is especially true if the disease is controversial, the cause is unclear, or the symptoms are vague and difficult to see. 

These societal beliefs are very widespread.  The victims of chronic illness are therefore forced to try to educate friends, family, co-workers, and physicians of their experience of the illness and its long-term reality.

2. The focus should be on illness rather than disease.
Disease is what has gone wrong at the biological level.  Illness on the other hand concerns the impact that the disease has on a person.  Suffering and disability cannot be predicted on the basis of a disease.  Two people with the same amount of disease, may have different amounts of illness.  It is once again up to the victims to educate others about their illness.

3. It is important to express emotions and it is OK to feel bad.
It is important for family and friends to realize that it is quite normal for a chronically ill person to experience sadness and depression over their situation.  By expressing such emotions, we can feel better.  It often takes more energy to keep emotions inside than to release them.  Family and friends should be told not to be frightened by such emotions.  However, feelings of hopelessness (ie. “there is no future”, “there is no sense in going on”) should be taken more seriously.  Hopelessness is not normal and requires intervention. 

4. To overcome depression:
Build a sense of the future by setting short term goals and plans.  The plans should include things that give you pleasure and the goals should be achievable ones designed to give a sense of mastery.  Feelings of pleasure and mastery often bring people out of depression.

5. A healthy coping style:
If we become chronically ill, we must view it as another life transition to which we must adapt.  We must first accept that we are not the same person that we previously were.  This means that we must recognize that we have different limits and abilities and our expectations of ourselves must change accordingly.  A healthy coping style involves setting different expectations; focusing on mastery of activities that we can still partake in; incorporating pleasure in our lives; and trying to find meaning for ourselves. 

6. Be an active rather than passive patient.
As a patient you are in charge.  Involve yourself with your treatment.  Ask for an explanation of the treatment options and become involved in selecting the treatment best for you.  View your physician as your coach who works with you.