July 22nd, 2009 by

How much people with epilepsy need support? It is easy to see how hard it can sometimes be to lead an independent life, and how easy to slide into dependence. This can sometimes be a fine balance. Sensible protection and support at the time of a seizure are one thing; putting a blanket restriction on all activities ‘just in case’, quite another – though common. Overprotection is a major issue for people with epilepsy, both by others and sometimes by themselves. It is all too natural for your nearest and dearest to want to shield you from injury of any kind, whether that’s during seizures, or stupid or ignorant reactions from others. Yet, people with epilepsy, like people anywhere, need emotional freedom and independence in order to live life to the full.

Overprotection in others can be made worse by their own feelings of guilt and anxiety and may have more to do with them than you. It may not even be related to the severity of the epilepsy – often, other people’s attitudes are much more of a disability than the epilepsy itself.

According to Seizures and Epilepsy in Childhood: A Guide? by John Mark Freeman, Eileen P. G. Vining, Diana J. Pillas, epilepsy can sometimes be a hook on which to hang other anxieties and jealousies in a relationship, or may be used as a weapon with which to control those who have it. (Some people with epilepsy may also use their epilepsy as a weapon themselves, using the epilepsy to manipulate others in order to get their own way, or as a protective shield between themselves and the outside world.)

Dealing with other people’s anxiety is certainly not easy. But, overprotection does need to be staved off if you are not to find yourself in relationships where you collude with people who may be only too keen to give you a dependent role. Only you can decide how much personal freedom you require, and take steps to get it.

There are various ways you can stave off overprotection. It helps to be well informed about epilepsy in general, and about your condition in particular. This includes a realistic assessment of your individual risks. How much does your epilepsy really increase the risks we all face? This information can be passed on to those close to you so that they gain an accurate estimate of the realities and risks of your particular position.

If others don’t seem to take in or accept what you are saying, you may need to work harder to change the dynamic of relationships in which you are the overprotected person. You may need to learn how to say no, and how to communicate what you want without being defensive, whether you’re addressing a partner, parents or other family or friends. It may also involve planning, perhaps along the following lines.

1) Stating what you want clearly. You may have realized that there is a problem, but others may not. It is worth taking some time to plan what you are going to say. This could break down into three parts -how things are, how they affect you, and what you want to change. For example: T find I am staying in all the time because you’re afraid of what might happen if I go out alone, and it’s making me really depressed. I would like to go out to the cinema once a week.’

This brings up another point – being specific about what you want. ‘More freedom’, though it is what you want, is vague. A night out a week is much more graspable. (You can always demand seven nights out a week at a later stage!)

2) Standing your ground. Other people may agree to what you want if only out of surprise, and then come up with objections a few weeks later. For example: ‘You can’t go out tomorrow because I will worry too much.’ This time the aim is for you to stick to what you want on the grounds that this is a reasonable request. Straight talking is often more effective here. For example: ‘I want to go out on my own tomorrow.’

3) Taking action. This is when you stop trying to communicate with words and do it with actions, such as walking out through the front door and down the road to the cinema alone.

It may take time to get your point across. Sometimes, though, it is surprising how quickly others back down and give you your space once you make up your mind what you want.