For most people with epilepsy the most over-reaching and problematic epilepsy based issue that they have may not be their seizures. For some, I include myself in this it is the thing that comes with it. The epilepsy package. The package that often leads to further, almost cyclic misconception and stigma and quite often this is not deliberate.
So I would argue that these that are almost afterthoughts for most people and are the very things that we need to talk about.
My epilepsy package
If you can, put the seizures aside for one moment and think about the very impact of the diagnosis on a person with epilepsy’s life. It is this that often becomes a sticking point for people without epilepsy. Mainly because this is not as simple as tiredness and being grumpy. And the way I see it, it can be separated into two sections.
1. Things that are in your control or put crudely are our problem. For example medication and prevention of our own seizures (as much as this is possible). It is also really hard to just let this go and not take the process of having to take pills as an extra knock. We shouldn’t. Simple as that, we just don’t deserve it.
Secondly, things that are beyond our control, i.e. people’s reaction’s to the condition and measures which need to be taken in order to maintain a functional life. Such as, avoiding public transport if you are feeling a bit shaking or taking that extra half day off work to sleep. Or having to take public transport because you can’t drive. These are things that people just need to be educated about so they can differentiate between it can so easily lead to misconceptions.
Medication can often have side effects which have a direct impact on our lives, we all trade between seizure control and how sloshy headed we want to be or how much weight we are prepared to put on or even how inadvertently angry we get. Some of us have to make some really tough life choices that can have a serious impact on your lives.
Let’s not forget good old fatigue and the NEED FOR SLEEP and the non negotiable routine. All these things are hard enough for us to come to terms with; friends and family manage pretty well, but employers can struggle to get past (disabilities) that they can not see. I can think of other invisible things that people seem to have no problem believing in. But these are simply people with epilepsy trying their best to manage their condition and live a full life. The last thing that is needed is a person delving into this space by undermining this sacred space and questioning the person’s ability to do so. Surely this can only exacerbate the situation? Take your control back, if you haven’t got it.
Periods of long term (epilepsy) illness can be… No they are knackering. But after all of that is done, to be honest I don’t fancy standing on a bus stop or waiting for a train. In fact the outside seems like quite a daunting prospect, as the period of seizures has sapped a bit of confidence. So it is a case of hopping back on the bike. However I tend to do so gingerly. This is often hard to explain to people. I haven’t had to do this for while but it is an embarrassing experience having to do so, as things that were predictable became for a short period not so. I know that this aspect is overlooked by people who lack knowledge about epilepsy. I can’t seem to understand why visibility is proof of existence and validation.
The pressure to return to “normal” is a heavy load to bear. Speaking from experience, I have ended up in a cycle of illness that after a while became non epilepsy related due to the anxiety of being away from work. Which in turn made my seizures worse. So around the cycle went. I have always been fortunate enough to have good support from my family and employer.
People with epilepsy are vulnerable to many things such as unemployment and poverty. But one striking observation is the link between epilepsy and mental health issues. For example; people with epilepsy are five times more likely to commit suicide. I can only deduce that this is not medication related but could be a risk of what I have grown to call the epilepsy package. Like I said before, the seizures I have a say in. My mental health would be something that I would need a wee bit more help with and also carries a stigma if not more so that epilepsy.
However all this starts from some very old misconceptions as a result of a bit of an unfair start (putting it mildly). Even now on this planet in this year, there are still people that still consider people with epilepsy possessed or having a demon. If I had a daemon at least it would be slightly more interesting.
The only way to deal with these sorts of ridiculous intricacies about epilepsy is to talk with all people about the condition. The tricky thing is when having come from a background in education, I can tell you that there is no compulsory & specific training for epilepsy is the classroom; be it first aid or social discussion, both are equally important and need to be done. What is the point in having an elephant in the room if you aren’t going to say “Oh, there’s an elephant in the room”! And knowing the classroom environment, it is the perfect place to whittle out misconceptions that have been embedded from the dark ages.
With epilepsy we only ever scratch the surface of the human experience of what life is actually like. The actual impact of the diagnosis. We look at the seizures and the obvious and important dangers but there is a spaghetti junction of complications that means it simply can not and never will be simplified.
So how about we get on with it eh?
Thanks for reading