CMT and Sexuality
by Simone Blajan-Marcus, MD
Simone Blajan Marcus is a retired French psychiatrist who has CMT and is active with CMT International France

Sexuality is indeed a delicate subject but our times allow us to face any kind of problem with honesty. This problem concerns all of us as we know now that sexual drives exist from early childhood and do not become extinct with old age but differ in quantity and quality.

1) In childhood, sexual drives are not precise. Children are often unaware of what is going on inside of them, at least, they cannot easily express them. Of course, sexual excitement is easier to observe on a baby boy as the organs are exterior. I remember seeing a golden jet of urine, in a sea resort, coming from a baby who had just had his bottle. It went up like a fountain obviously from an erected penis. I have heard from a colleague that a mother came to her for consultation because her baby was "abnormal." She had observed the erection but not understood that it was perfectly normal.

Young children often express their sexual drives deviously through a more than usual expense of energy or a greater sense of competition, in sport or anything else. Girls will want to imitate their mothers, boys, their fathers, in most cases. But parents should not be concerned because their five-year-old "wants to marry" a person of the same sex. It is very banal and need not alarm adults.

What about CMT children? Their mobility being impaired, they have a tendency either to mature intellectually earlier than average or to withdraw or even to become cranky, cry-baby or fussy. In most cases, the best thing is to talk gently with them and help them express their frustration. "Nobody wants to play with me" or "I am not popular," should not be denied (it may be true) but worked out with the child. He has to understand he can change something in the situation which does not mean it is all "his fault" of course. Kids are prone to be cruel with each other as well as helpful. Ignorance is the worst element in misunderstanding. Tell your child the truth about CMT, kindly, tactfully, but clearly. If he or she asks questions, do not hesitate either to answer them or to tell the child you do not know and direct him to a competent person. Things will be much easier after that.

2) Adolescence is a capital moment for the personality. Sex is everywhere with teenagers and nowhere. They seem to run after something they cannot define and they run hard! It can be summed up by a 15-year-old girl who came to see me because she did not work well in class. She was rather inarticulate until she exclaimed, "I wish, I wish, I wish!..." Yes, she was all wish, a passionate quest for love, and most probably sex, but the latter was not even formulated clearly inside of her.

Of course, CMT is a big handicap at any age when boys and girls are terribly sensitive of their looks, especially girls (or they take the opposite attitude, they do not wash and eat like pigs, as a defiance). Add pimples, acne, to an awkwardness that is increased by CMT and it may go from bad to worse. In another issue of this newsletter, I answered questions by a mother of three girls in their teens who all had CMT, including the mother. It was anything but easy for all! But, even then, problems can be alleviated if not cured. A person from outside who has some credibility in the mind of youngsters can undramatize the relationship. Needless to say, humour is the best remedy but it requires a certain distancing from the problem and that is not always possible.

3) With adults, the problems become at the same time easier and more acute. Easier, as adults can, more than young people, say what they feel, be more straightforward, less self-conscious. The sexual drives are more precise, more imperious. The need to have a family, babies, a spouse, is more urgent. A woman can have babies ideally only between the ages of 18 and 40. At least, that seems to be the best time. Twenty-two years is not much time if we consider that a CMT woman cannot dance, sometimes not even walk, and for a man, the main problem is to find work that will pay enough for a family. As more and more women work and are independent, the same difficulty arises for them. So sexual satisfaction is more difficult to accomplish with CMT.

Moreover, the sexual act itself is often a problem. Most people with CMT have the usual weakness in the legs but no numbness of the genitalia. But that can happen. Personally, I know a woman who lost her clitoral sensitivity at least a year before the other symptoms of the illness were declared. So, she did not make the connection and, being rather secretive, did not even discuss it with her husband. It was only much later when an intelligent neurologist asked her about her sexual activities that she realized it was not "psychosomatic." Also, people with CMT are prone to painful cramps in the thighs, the legs, and the wrists. That does not help, either.

The remedy is LOVE. If the partners love each other, desire each other, they will find the best positions, the best moment and accept to interrupt or abstain if too painful for them. I do not know that CMT softens erotic sensations; this might be interesting to elaborate with the testimony of several people, but I tend to believe that the loss or diminishing of the libido is more due to the psychological effects of the syndrome than the illness itself. It is easy to take refuge behind a handicap or a disease, as one tends, in spite of the large inconveniences, to "protect" one's symptoms. It is like age: a too easy alibi against fighting or elaborating one's "defects."

4) Old age is yet another difficulty. The question arises again and again. What can be attributed to one, what to the other? Not that it makes a lot of difference. They both are "incurable," but they both can be retarded, alleviated, and many side effects of them cured. Of course, there is no such thing as "all there is to do is..." Aging is a partially genetic process, like most CMT, but we also know that the life span of human beings (and also pets) has been considerably lengthened. Actually, a woman averages 79 1/4 while men stagnate at 72...tobacco, alcohol, physical risks are certainly a factor. But one thing is longevity, the other is aging. A person can live 90 years and more and have a good memory, be very attentive, and read without glasses. Another can become wrinkled at 45, dependent at 60, and deaf at 65. And some people age because of their psychological condition. Depression makes a person age more quickly than someone who keeps his or her sense of humour.