‘I had my first fit at the age of 12. I was on board ship at the time with the Girl Guides. Since it was my first trip abroad, and there was a force eight gale raging in the North Sea, no one thought that it was anything more than a childish convulsion. No one told me about it either. I had this incredible dream of lying in a cabin wearing a friend’s blazer. No one said, ‘That’s not a dream, that happened to you yesterday.’ Why there was all this secrecy I never knew.
‘I returned home from my trip abroad, and proceeded to relate all to my parents. “You haven’t told me everything, “said my mother. ” You didn’t tell me you were ill while you were away.” No one was more astonished than me. Despite my protests I was led off to see the doctor, who gave me tablets to take, told me never to forget them, and said no more.
‘A year later I went off to camp with the Guides again. I remember being sent to the farmhouse to collect eggs and bread, with another girl to help carry. “Thank goodness Sarah had the eggs,” was the comment of the day, since I had a fit just outside the farmhouse door. My mother was sent for and suggestions were made that perhaps it was being away from home that “upset” me. To her everlasting credit my mother asked me what I felt about the whole matter, and I was allowed to stay at the camp. It was bad enough being the “different” girl who had the fit: I didn’t want to be the “different girl who went home” too.
‘I had my third a few months after that and went to see a specialist at a London hospital. “Epilepsy,” he confirmed after tests had been done. It was almost a relief to know that I had a recognizable condition, and was not just having “funny turns” every so often . . .’
(From Epilepsy ’78, British Epilepsy Association – see appendix)
Plenty of people will recognize and empathize with this feeling of relief when a vague feeling of being under the weather or a series of odd or inexplicable symptoms turns out to have a solid basis in medical fact. Whatever the diagnosis, once you know what is wrong you can start to face it and deal with it.
However, a diagnosis of epilepsy is not one to be made lightly. Once it is made, the person concerned is given a ‘label’ that may affect their chances of employment or lose them various privileges – a driving licence for example. It means, too, that they will have to start a regime of drug-taking that may continue for months or even years.
Another problem is that epilepsy is not a simple disease and it is not always easy to diagnose. There is no such thing as a ‘typical’ case of epilepsy. It can take many forms and have many different symptoms; there is no one simple test for it. This is one reason (among several) why people who have epilepsy dislike being lumped together and referred to as ‘epileptics’. It is a meaningless label as well as an insulting one.
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Epilepsy
