Chronic Illness—A Family Affair

WHAT is chronic illness? Simply put, it is illness that lasts a long time. Additionally, one professor explains chronic illness as “an altered health state that will not be cured by a simple surgical procedure or a short course of medical therapy.” What makes chronic illness or its effects so challenging is not just the nature of the sickness and the treatment but that it has to be endured for so long.

Furthermore, the effects of chronic illness are seldom limited to just the patient. “Most people are part of a family,” states the book Motor Neurone Disease—A Family Affair, “and the shock and anxiety felt by you [the patient] will be shared by those close to you.” This is confirmed by a mother whose daughter had cancer. “Every member of the family is affected,” she says, “whether or not they show it or are aware of it.”

Of course, not everyone will be affected in the same way. However, if family members understand how chronic illness affects people in general, they will likely be better equipped to meet the specific challenges of their particular situation. In addition, if those outside the family circle—workmates, schoolmates, neighbors, friends—understand the impact of chronic illness, they will be better able to provide meaningful and empathetic support. With this in mind, let us look at some ways in which families might be affected by chronic illness.

Journey Through a Strange Land

A family’s experience with chronic illness could be likened to their taking a journey through a foreign land. While some things will be much the same as they are in the family’s homeland, other things will be unfamiliar or even radically different. When chronic illness afflicts a family member, many things will remain largely unchanged in the family’s life-style. However, some things will be very different.

For a start, the illness itself may impact on the family’s normal routine and force each family member to make adjustments in order to cope. This is confirmed by 14-year-old  Helen, whose mother suffers from severe chronic depression. “We adjust our schedule to what Mom can or cannot do on any given day,” she says.

Even the therapy—which is intended to provide relief from the illness—may cause further disruption of the family’s new routine. Consider the example of Braam and Ann, mentioned in the preceding article. “We had to make major adjustments in our daily routine because of our childrens’ therapy,” says Braam. Ann explains: “We were going back and forth to the hospital every day. Then, in addition to that, the doctor recommended that we give the children six small meals a day to compensate for the dietary deficiencies caused by their disease. For me, it was a whole new way of cooking.” An even greater challenge was helping the children to do the prescribed muscle-strengthening exercises. “That,” recalls Ann, “was a daily battle of wills.”

As the patient adjusts to the discomfort—and sometimes the pain—of medical treatment and the scrutiny of medical personnel, he becomes increasingly dependent on the family for practical assistance and emotional support. As a result, not only do family members have to learn new skills to manage the physical care of the patient but they are all compelled to adjust their attitudes, emotions, life-styles, and routines.

Understandably, all these demands increasingly tax the family’s endurance. A mother whose daughter was in a hospital being treated for cancer confirms that it can “be more tiring than anyone else could ever imagine.”

Ongoing Uncertainty

“The continuous ups and downs of chronic illness present a threatening sense of uncertainty,” states Coping With Chronic Illness—Overcoming Powerlessness. Just when family members are adjusting to one set of circumstances, they may be confronted with altered and possibly more difficult ones. Symptoms may be erratic or may suddenly get worse, and therapy may fail to provide anticipated improvement. The treatment may have to be  changed periodically or may result in unforeseen complications. As the patient becomes more dependent on the support that the bewildered family may be straining to supply, previously controlled emotions may suddenly explode.

The unpredictable nature of many illnesses and treatments inevitably raises such questions as: How long is this going to continue? How much worse will the illness get? How much more of this can we take? Terminal illness often prompts the ultimate uncertainty—“How long will it be before death strikes?”

The illness, treatment regimens, exhaustion, and uncertainty all combine to bring about another unexpected consequence.

Effects on Social Life

“I had to work through strong feelings of isolation and of being trapped,” explains Kathleen, whose husband suffered from chronic depression. “The situation was relentless,” she continues, “because we were never able to extend or accept invitations to socialize. Eventually, our social contacts were virtually nonexistent.” Like Kathleen, many end up having to cope with feelings of guilt for not being hospitable and not accepting invitations. Why does this happen?

The illness itself or the side effects of the treatment may make it difficult or even impossible to share in social events. The family and the patient may feel that the illness carries with it a social stigma, or they may fear that it will cause embarrassment. Depression may make the patient feel unworthy of previous friendships, or the family may simply not have the energy to socialize. For a variety of reasons, chronic illness can easily result in isolation and loneliness for the entire family.

Furthermore, not everyone will know what to say or how to react around a person with a disability. (See the box “How You Can Be Supportive,” on page 11.) “When your child is different from other children, many people tend to stare and make thoughtless remarks,” says Ann. “As it is, you tend to blame yourself for the illness, and their comments only add to your feelings of guilt.” What Ann says touches on something else that families are likely to experience.

Emotions That Wreak Havoc

“At the time of diagnosis, most families react with shock, disbelief, and denial,” states one researcher. “It is too much to bear.” Yes, it can be devastating to learn that a loved one has a life-threatening or debilitating illness. A family may feel that their hopes and dreams have been shattered, leaving them with an uncertain future and a deep feeling of loss and grief.

True, for many families that have seen prolonged, distressing symptoms in a family member without knowing the cause, the diagnosis may well provide a sense of relief. But some families may react differently to the diagnosis. A mother in South Africa admits: “It was so painful finally to be told what was wrong with our children that, frankly, I would rather not have heard the diagnosis.”

 The book A Special Child in the Family—Living With Your Sick or Disabled Child explains that “it is natural for you to go through an emotional turmoil . . . as you adjust to this new reality. Sometimes your feelings may be so intense that you fear you cannot cope with them.” The author of the book, Diana Kimpton, whose two sons had cystic fibrosis, relates: “I was frightened of my own emotions and I needed to know that it was alright to feel so bad.”

It is not unusual for families to experience fear—fear of the unknown, fear of the illness, fear of the treatment, fear of pain, and fear of death. Children in particular may have many unspoken fears—especially if they are not given logical explanations for what is happening.

Anger too is very common. “Family members,” explains the South African magazine TLC, “may often become the scapegoats for the patient’s anger.” Family members, in turn, may feel angry—with the doctors for not detecting the problem sooner, with themselves for passing on a genetic defect, with the patient for not having looked after himself properly, with Satan the Devil for causing such suffering, or even with God, feeling that he is to blame for the illness. Guilt is another common reaction to chronic illness. “Virtually every parent or sibling of a child with cancer feels guilt,” states the book Children With Cancer—A Comprehensive Reference Guide for Parents.

This maelstrom of emotions often results—to a greater or lesser degree—in depression. “This is probably the most common reaction of all,” writes one researcher. “I have a file full of letters to prove it.”

Yes, Families Can Cope

On the bright side, many families have found that coping with the situation is not nearly as difficult as it first seemed. “The pictures produced by your imagination will be far worse than reality,” assures Diana Kimpton. From personal experience she found that “the future is rarely so black as you imagine it in those early days.” Be assured that other families have survived their journey through the strange land of chronic illness and that you can too. Many have found that simply knowing that others have coped has provided some relief and hope for them.

A family may logically wonder, though, ‘How can we cope?’ The next article will look at some of the ways families have coped with chronic illness.

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Families need to care for the patient and adjust their own attitudes, emotions, and life-style

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Both patient and family will experience strong emotions

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Do not despair. Other families have coped, and you can too

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Some Challenges of Chronic Illness

• Learning about the illness and how to cope with it

• Adjusting one’s life-style and daily routine

• Coping with changed social relationships

• Maintaining a sense of normality and control

• Grieving over losses that result from the illness

• Coping with difficult emotions

• Maintaining a positive outlook