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of everyone affected by epilepsy

Anonymous

I am fortunate to be able to say that my condition is very mild compared to some. The low dosage of drugs I take means that I have few side effects, but this is not to say that my life as a woman with epilepsy is carefree. Issues such as driving, alcohol intake, and contraception remain at the forefront of my mind, especially at my age.

At the moment I do not drive/have lessons, (which is not just because of my condition, although it is a factor). I don’t want to feel a liability if I do drive, but at the same time I don't want to be forever dependent on other people.

Epilepsy Mine image

Alcohol issues are perhaps the worst to have to deal with at the moment, especially when I am living in times where being drunk, as routine behaviour on a Friday night, is just part of youth culture. I don't have a problem with just having one or two drinks, but the vast majority thinks you are odd for not ending up laughing on the floor. I should not have to justify my actions to anyone that is particularly sarcastic to me about drinking, but I don’t want to alienate myself by just walking away. It may seem a petty problem for someone who is terminally ill, or has lost a limb, but it should not be ignored. I know of people on high doses of medication making a regular habit of getting drunk so that they don’t feel stupid. Yes it is a personal decision/risk to take, but you cannot pretend that it's not happening.

Although I have no need to use contraception at the moment, it will undoubtedly be an issue for me in the future. Everything so far seems to have been very much left up to me to take the initiative in asking questions about my condition. However, we cannot depend on everybody to be like this.

I only realised that there could be complications with contraception or indeed pregnancy, primarily through watching a programme on television. I am also grateful to BEA for their recent WE Can campaign for raising the issue further. Without these two sources I, and many others, would be none the wiser. I felt angry for those let down by the health system.

At the moment I am in the middle of exam revision for my A levels, and I attend a grammar school. I used to have very high stress levels and was constantly on edge, partly because I was so competitive, but this tended to invite seizures. Over the past couple of years I have learned to calm down, and let things go a little by worrying much less about things that are out of my control. I feel happier now and more in control than I ever was in my earlier years. My standards have not dropped as I am one of the most determined/focused people I know, but I am aiming for a career in something that should bring me job satisfaction, although perhaps a smaller wage.

I look towards the future with optimism, although perhaps I would not be quite so positive if my condition was more severe. I just wish there was more research, more knowledge, and more understanding. I would like the comfort of knowing that if/when I finally get off the medication, I will never get epilepsy again. (Will I grow out of it, or will it be lurking in the shadows waiting to be triggered off again like it was the first time?)

GPs should be informed more about the condition so that crucial diagnosis can be made much earlier.

Children in secondary schools should be taught about some of the different types of epilepsy and how to help someone who has a seizure. It could be incorporated into Personal Health and Social Education lessons with talks on diabetes, dyslexia, autism etc, which are so generalised, that people have misconceptions.

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