I found my old seizure diary the other day which prompted me to write this mini-rant post. I was diagnosed with epilepsy back in 2012, and since then I’ve been on a rollercoaster journey. Along the way, I’ve laughed and cried about my condition, but one thing that has happened more than it hasn’t is peoples lack of knowledge of epilepsy. For me personally, I’ve found people to be confused, they simply do not know how complex this condition really is. Many often refer to ‘text’ book epilepsy, when even then, that isn’t always the case either. Today I want to squash some epilepsy myths that I have encountered.
I was diagnosed with epilepsy back in 2012, I won’t bore you with my journey you can read my epilepsy journey here. However, it’s been a bumpy ride, to say the least. I have found you get two ends of the spectrum with reaction with epilepsy, either the person who is super worried about everything, which is obviously preferential to the other end of the scale, can’t see it, it’s not there. I know who I’d prefer to have an encounter with!
Epilepsy myth 1 – But you look fine?
I’m so sick and tired of people thinking that I might look fine, but every day is a battle. Every single day in some shape or form has epilepsy in it. it’s not a case of, I look fine, therefore I am fine. Every single day I have to do a body check and weigh up my options of triggers. Am I tired? If so, do I need more rest? Is this going to stress me out? How can I manage this? Whilst I know this can happen with anyone, but epilepsy? It’s amplified. Trust me.
There are a number of things which can impact our condition big style. Often we don’t know the trigger, it’s like, boom, hi there seizure for no apparent reason. Others we can retrace our steps and pinpoint the culprit. I’d say 65% of the time I can function pretty well without an issue now, the other percentage is dictated by epilepsy. It really annoys me that people don’t have compassion. It’s like, they don’t understand it, nor are willing to understand, so to them, it isn’t important. Ridiculous. This can literally happen to anyone, weight, height, gender or race. It’s like a really bad bingo game.
Epilepsy myth 2 – You didn’t fit?
Not everyone with epilepsy has a fit. If you didn’t know that then you’ve really been cooped up and not reading the news, there are so many kinds of epilepsy. Even as a later-life diagnosed epileptic, the combinations of this condition are literally endless and even now I’m learning about the differences. Some of us might have the same, like focal seizures, but even two people with the same kind can experience something different. One person with focal seizures can experience sheer joy, whilst the other can feel impending doom. Guess which one I have?! Exactly. It sucks.
Epilepsy myth 3 – Oh no it’s got flashing lights
Whilst I appreciate the concern, I’ve heard, ‘are you okay with these flashing lights‘ hundreds of times, all whilst flashing lights are in fact, flashing. No. We don’t all have issues with flashing lights. They give me a headache but it doesn’t provoke an epileptic fit. That being said, I’d rather people aired on the side of caution and asked someone with epilepsy than assume they weren’t, but only 3-5% of people with epilepsy have an issue with flashing lights. I do get a bit peed off when I see people share flashing images on a public domain or a social media channel, it’s like c’mon. That person who is a photosensitive epileptic goes out of their way to avoid flashing lights, suddenly scrolls through twitter to flashing images – I mean how could they know other than avoiding social media altogether? Ridic.
Can you tell I needed a bit of rant? Yes. I know we can’t know about every condition, but the fact people still think epilepsy is just a grand mal is quite annoying now. With all this talk on epilepsy websites, and in the news, I’d have hoped society would know more than they do. In my 3 previous jobs I’ve had to explain what ‘my kind’ of epilepsy is.