The Issue of Empowerment in People with Epilepsy

The issue of empowerment is particularly topical today, forming an important trend in epilepsy thinking and treatment. According to epilepsy organizations and the World Health Organization (WHO), as well as those with epilepsy themselves, there seems to be a general feeling that it is high time that people with epilepsy took a more active role in their treatment. 'Out of the Shadows', the health campaign launched by the WHO, is aimed at improving treatment and awareness of epilepsy, and who is better qualified to do this than those with epilepsy themselves?

Epilepsy may be different from other conditions in that the concept of taking control has far-reaching implications for those with the condition. Becoming informed about epilepsy, improving communication with your doctor, and generally taking more responsibility for your own epilepsy and well being, are all today seen as of increasing importance in coming to grips with epilepsy.

Knowing about epilepsy seems to be a key starting-point. Many studies highlight the importance of being given adequate information at the time of diagnosis and at any crisis points, such as changing drugs for pregnancy. In a condition characterized by its unpredictability, information is a key in giving people a sense of control over their epilepsy.

But, many people report not receiving or having access to adequate information with regard to possible causes of their epilepsy, lifestyle implications, medication and support systems. Not being given enough information tends to make people feel more limited by epilepsy and more like victims of prejudice. Women in particular and their guardians do not feel they are getting enough information and advice about issues which will have a great impact on their lives, according to Epilepsy Action. But, knowing about epilepsy by itself is not enough - as already stated, epilepsy varies widely. People also need to know more about their own particular form of epilepsy. In one study, patients were found to know more about epilepsy in general than about their own condition and drug regimes.

Some recent research, presented at a European Epilepsy and Society Conference, in conjunction with the International Bureau of Epilepsy, highlights certain key points as being essential to empowerment, including:

1. being able to identify which factors may make seizures more likely;
2. being able to explain epilepsy to others;
3. understanding the importance of compliance.

Identifying which factors make seizures more likely

This has to be up to the individual as everyone's epilepsy is different. Keeping a good, detailed seizure diary for at least three months is something many people find helpful, especially as it is a way of taking more responsibility for their condition. You could include:

1. time of the seizure;
2. what you were doing;
3. anything you had to eat or drink in the preceding 24 hours;
4. who you were with, and details of any social life in the day or two beforehand;
5. details of your bedtime and sleep routine;
6. any exercise;
7. if you are a woman, any details with regard to ovulation or menstruation;
8. your feelings;

Some people have been able to identify precise triggers, from lack of sleep and stressful confrontations, to certain medicines like cough mixture. You may also get a clearer idea of what kind of lifestyle suits you best, and how much stimulus. A diary is also useful as a way of monitoring the effects of anti-epileptic drugs, especially if your dose is changed, or you start taking a different drug. Some people also have typical pre-seizure moods and a diary may also help you be more aware of these warning signs.

Not everyone does find a link between external events and seizures, though sometimes asking a partner, close friend or your doctor to help you go over your diary may help you spot a clue you missed. However, for some, there doesn't seem to be any apparent link between outside factors and seizures.

Being able to explain epilepsy to others
Having epilepsy accentuates the normal condition of what type of persona or mask you present to the outside world, how much to tell, how much to reveal. Most people, though, will need to find some workable way of explaining epilepsy to others - friends, fellow workers, bosses, and so on. Many people evolve an explanation which suits them and produce it more or less unchanged for each new listener.

There are times when you might want to add more detail. Another common concern is how much to tell people of the opposite sex when forming a new relationship. People may naturally feel that they want to be known first as a person, and then as a person with epilepsy, but, if epilepsy is not talked about openly from the beginning, it can become increasingly difficult to mention it. The potential risk here is of course sudden revelation by a seizure. On balance, it may be best to mention some of the basic facts so that others are prepared if a seizure does happen. True friends will appreciate the confidence shown in them by this revelation.

Source: The Epilepsy Diet Treatment: An Introduction to the Ketogenic Diet?by John Mark Freeman, Millicent T. Kelly