The Family and CMT
by Simone Blajan-Marcus MD

In the majority, CMT starts at a tender age. Children cannot easily express what they feel, so many general practitioners (most of them ignoring the illness) cannot detect it easily. On top of that, nobody, except the neurologists, can be familiar with the 300 odd nervous diseases...so, thanks to papa Freud, most people think first psychosomatic, in front of fatigue, frequent falls, clumsiness.

When, at last, the subject is really broached, there is a relief in the family, but the examinations are painful and frightening (think of the EMG that looks like a refined torture invented by the Nazis). Sometimes a misguided MD has the poor child taped (lumbar tape). Then the child is told he has CMT. First, his parents have been informed, but how? So many doctors are in a hurry, not well prepared for psychological approach, or simply tactless. If the doctors are relaxed, the nurses not to overworked, the parents are reassured. But children have their own way of understanding, and it takes time and a lot of patience to have them picture the situation as it is really.

The first phase, after the initial shock, is generally a tendency to overprotect the child. Guilt is always present, whether conscious or not, and it is difficult for the family not to try to redeem itself for the injustices it feels it has committed. Also, many changes will happen. With a severely affected child, the geography might be deeply altered; a sibling might have to give up his room for a brother or sister, for example. The parents have a tendency to unite more narrowly when stricken by a common bad fate. But later on, my experience is that it tends to separate or tense their relationship. I have seen and heard about a lot of divorces caused by the strain of caring for a disabled child. It seems logical.

A man I know has lost both a wife and a son; the son needing constant care, and the mother, although well-to-do, not letting anyone take care of him. Also, the siblings, who can be very cooperative, need attention lest they feel some bitterness towards the sick one. They may be also over-scrutinized or cared for by anxious parents who seem to detect some first symptoms of the dreaded illness in them
Some adults or siblings can go to the other extreme and deny the illness and accuse the medical profession of false diagnosis. I had a patient who had MS and was forced to play tennis with her husband who could not accept her exhaustion. I have a feeling many men have difficulty imagining a woman sick or tired. Some even become belligerent when that happens.

If the patient is young, the adjustment is amazingly quick. This is when an association like ours is very helpful, to answer questions, to see to it that hopes are preserved, griefs comforted. The brothers and sisters live through a double problem: the danger of being neglected, but also, like a Damocles sword, the possibility no one knows if or when they may find they have CMT themselves. They are entitled to a lot of sympathy and help.

The atmosphere of a family can change from poisoned to relaxed with sometimes a simple conversation. If that is not enough, family therapy, or individual therapy, can be of use. Anonymous phone calls for shy people would be beneficial too. It is important that people have someone to talk to or write to outside of the family circle.
The worst situation is caused by dark silences, untold words, which does not mean that talking is the universal cure. I have known couples who talked all night and were completely bruised morally and crushed physically after that. Indiscretion at the other extreme can also be bad.

CMT in most cases is a family affair. It can draw a family apart or more closely together. It mostly depends on what is done with it, like any major problem in life. A young CMT adult told me she considered her illness as a blessing in disguise. To my surprise, she added: "I was careless, selfish and thought nobody loved me. Since I walk with crutches, I have discovered how things are different. And I am different, too!"