Silent Suffering

'Silent Suffering' image

By Katie Nolan, Co. Longford

Epilepsy is one of those conditions that despite all the progress over the years, is still kept in the dark. It has gotten good publicity and more awareness is definitely out there compared to the last few decades, but this awareness and 'knowledge' is still very limited.

As somebody who has lived with epilepsy for 21 of my 26 years, I can tell you that what is put out there about the condition is only a tiny ration of what is really included in the day to day living with it. People who don't have to live with the condition themselves, or with friends of family suffering, don't and can't possibly understand the brutal restrictions it can have. They often just see it as having a grand mal seizure now and then. Well that is not the case.

There are actually dozens of different ways in which seizures can take hold of a person that are often not recognized and overlooked. They may appear more 'subtle' to an untrained eye, and yet can be just as, and often more disruptive. Some of us have one type of seizure, or even a mixture of several but either way they are exhausting. They restrict lives in so many ways - what jobs we are allowed to do, what activities we can partake in, as well as removing the ability to drive. This in itself can take away the independence that so many of us yearn for but will possibly never have.

It can affect relationships, because of how people perceive you, or their inability or unwillingness to deal with the condition. Being on medication, often a cocktail of it, is often most people's hope of getting some sort of control over their epilepsy. However, the side effects of these medications can sometimes be just as, or even more hard to live with than the condition itself. Side effects can include many, many things ranging from weight gain/loss, tremors and headaches to losing hair, constant migraines and even personality changes, with dozens more in-between. Because these are 'only' side effects, how they restrict and impact on people's lives is desperately overlooked. This is something that need to be recognized, and addressed when epilepsy is brought into the public eye. The depth of the condition, and its effects need to be known so people can truly understand what living with epilepsy is like; that it is not always just having the odd 3-5 minute seizure every once in a while and then getting on with a 'normal life' for a large portion of sufferers; and that the real depth of difficulty is often kept silent.