By Robin Morris Ph.D.

Department of Psychology

Georgia State University, Atlanta.

There are common and normal patterns of responses that most people go through when they have to deal with the trauma of a loved one coming down with any disease or injury. Those of you who have to deal with the HD patient probably have more difficulties than some other groups because of the significant behavioural, psychological and emotional changes that occur in the patient with the disease.

And, if you come from a family with a history of HD, you also have to deal with the frightening reality that you, or one of your siblings, may come down with the disease.

To add stress upon stress, the timing and early symptomatology of the disease are variable and unclear, so you are always suspicious of those little signs that may be a hint that you, or someone else, have it.

HD is considered to be a chronic disease. The key word here is not chronic, but disease. If you break down the word into its various parts, you get dis-ease. said another way, this would be "not at ease".

The patient has dis-ease with the changes that are occuring to him or her. The family is having dis-ease with the patient’s changing behaviour and problems, and the rest of the world usually is at dis-ease being around such persons and situations

I think this dis-ease is the reason I have so many families who come to me about the problems they are having "dealing" with their patients. Probably the hardest thing I have to do with these families is to get them to understand that the kinds of problems they are dealing with are the results of their trying to cope with their dis-ease. Most of them feel they are not coping at all with the situation, when, in fact, many of them are coping very well.

What is coping ?. Coping means that the individual, or family is reacting as adaptively as possible to the situation. Even though a family or person is unhappy, depressed, etc., they may be doing an excellent job dealing with their situation

When someone first shows signs of HD, most HD affected people do one of two things: (1) go to a doctor, or (2) say there is nothing wrong and keep on going with their lives as if there were no concern.

How do families deal with these responses ?. Again, usually, one of two ways: (1) make the affected person go to a doctor, if possible, or (2) say there is nothing wrong and keep on going with their lives as if there were no concern. Both of these are normal responses to the initial signs of HD. Now, what happens if the affected person does not want to go to a doctor and the family wants him to go, or vice versa ?.

Usually, when these situations occur, we begin having some stress. Let me make it clear that both of these responses to the initial signs of the disease are considered to be adaptive ways of coping with the disease. Neither is more right nor wrong than the other. Both simply represent different ways individuals and families adapt to the situation.

So, why is there stress and strain in the family even though everyone is coping adaptively ?. Usually, it’s because of the effects of the disease process and the way people cope with it.

At this point, (1) neither the patient nor the family knows the whole story. There’s been no definitive diagnosis made, etc. (2) because of this, the people in the family and others around the patient don.t really know what to do or say. There is a kind of limbo. (3) Some people also try to "protect" the sick person by refusing to deal with the patient’s concern, or lack of concern, "so we don’t upset him." This may be a way of coping so no one gets "upset."

It’s interesting to note that most patients I’ve talked to have said that they have guessed their true conditions, based on the behaviour of people around them. Some authors have called this the "mutual deception" process. The family doesn’t tell the patient what’s going on, so as not to upset him, but, in fact, the patient knows but doesn’t let the family know he knows so as not to upset them and cause more problems.

As these processes continue, the patient begins to feel more and more isolated from those around him. He is all alone with his fears and knowledge. There are also other factors which isolate the patient. these include (1) the family’s own fear of talking about the disease and people’s common fear of death; (2) the guilt many doctors and other professionals feel about not being able to cure the patient. This may cause them to withdraw or not talk to the to the patient or family about the disease; and (3) the feeling that for the person who is sick there is nothing more stressful or frightening than discussing the disease and the future.

Generally, I have found that this isn’t true for most patients. Many of them need to discuss the disease and their future in the context of getting their emotions "together" and their unfinished business finished.

In HD patients, finishing their unfinished business and dealing with their emotional issues is an important task because as the disease progresses the patient becomes less and less able to understand and to deal effectively with them. By putting them off, we sometimes find ourselves with a patient who is too demented to be able to deal with them appropriately, and this can make it even more difficult for the family.

There are some other classic psychological responses to dis-ease that both the HD patient and the family may share. Generally, there are two typical responses to the stress related to chronic illness and possible death. One is an increase in the state which has been called the intrusive period, in which there is an increase in memories, fantasies, and emotional "flashbacks." The other state has been called the denial period, a state in which there’s avoidance and emotional "numbing."

Everyone thinks that it’s "bad" to deny things. Not always. Sometimes denial is just another coping technique which can be timely and adaptive. It lets a person or family continue with normal activities while beginning the process of dealing with the situation.

I have learned through this work that the patient and the family have to be allowed to cope in their own manner.

People or families appear to "work through" the situation by oscillating between these states and slowly adapting to the situation. Treatment can usually help a person or family who gets "stuck" in one of these periods too long.

Itr is also not unusual for a person to go through a period of anger and frustration, during which they respond negatively and aggressively. This sometimes causes a great deal of guilt in family members when the anger is directed against the patient. Again, this is another way of coping and may be serving a purpose in distancing the person from the target of their emotions. Anger is a common response to any loss.

Another response is depression. This can be significant and lead to some self-destructive action if exacerbated or not worked through.

There is also a period when people may feel guilty because they are glad it’s the other person with the disease abd not them. This has been called survivor guilt.

Finally, there is a period when some people begin to fear the real helplessness of the situation. Most people have some difficulty dealing with the idea that they, or a loved one, are vulnerable and they are helpless to do anything about it. All these responses are common and usually are the product of a person’s or a family’s past history and current situation. All are "normal" ways that individuals and families cope with chronic diseases like HD, even though these processes may not feel "good".

Coping may be considered to be another word for learning to adapt to a situation which is stressful and over which the person has little control. Coping is a changing process by which a person adapts to the situation and the real, emotional stresses involved. What most of you who are dealing with HD have been going through is a normal response to an abnormal situation.

Taken from the HDA Newsletter (London) issue no 50.

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