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of everyone affected by epilepsy

 

John

I'm 60 years old and I was diagnosed with epilepsy when I was 20. I feel the long-term impact of living with epilepsy, causing a sense of isolation, even though it is now controlled.

Over the past forty years I have, at one time or another, been on a vast number and combination of medications. None were 100% effective in controlling seizures, but some (including the ones I am currently taking) are more effective than others. 

The side-effects are minimal but I have realised, however, that part of the condition (or forty years’ worth of AED’s) have resulted in me being slower, both physically as well as mentally. I’m more lethargic and less social. I cannot be bothered to make the effort to go out or have people come to visit me. It is not so much that this results in loneliness – although that is very individual – but it’s certainly a form of social isolation.

I am often very unsteady. It is difficult to know whether this has indeed got worse over forty years, or whether I have just become more aware of it. I feel anxious about walking anywhere if I am not able to put my arm out to touch something solid and immoveable like a wall or a fence. Although I do recognise that all of these things can be age-related, but when I look back over the past forty years I can see that they have all been ‘building up’.

While my seizures are now relatively controlled, forty years’ worth of epilepsy has led to difficulties, not only with jobs, but also with friendships, relationships, and my social life. It is only now when I have reached the ripe ‘old age’ of sixty, that I have begun to realise just how isolated I am.

It is this isolation – from the constant worry about the need to take extra care to avoid seizures, but also the induced feelings of lethargy - that seem to me to be often overlooked.

John
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