Dealing with Myths and Misconceptions

Hi again! The support from my last two blogs was overwhelming and I just wanted to say a massive thank you to everyone who took the time to read them! Today I wanted to talk about my personal experience dealing with misconceptions and myths surrounding epilepsy. However, if anyone would be interested in a blog where I actually go through some commonly held misconceptions and myths, tell me in comments or drop me a message and I’ll try my hand at myth busting blog style in the future.

There will always be people who make assumptions about epilepsy, and think they know everything they need to know. I know this isn’t everyone, but unfortunately it happens a lot. Thankfully most people are willing to listen.  

I am so grateful for my Primary school who listened and worked with me and my family and never showed any kind of preconception when I arrived. The kids were great and just got used to me seizing in the playground, in class, and sometimes (embarrassingly) in assembly. They asked questions when they wanted to, but just accepted epilepsy as part of life.  All was great until year six. We had a new school administrator when I got to year six, who despite my assurances that I had been tested for photosensitivity, tried to ban me from my leavers disco because of the misconception that epilepsy=photosensitivity to lights. It took assurance from my mum that I was right and that particular trigger didn’t affect me, to force them to let me attend and, in the end, I was allowed to dance really badly to early Katy Perry music!

When I hit secondary school, it was really difficult to navigate. I had to deal with school nurses and teachers. I found it really hard as a scared and nervous eleven-year-old to try and explain to people in authority over me that I knew my epilepsy better than them. They would try and force their misconceptions of epilepsy on me and that was tough, because sometimes they were right, and sometimes they were way off! Trying to explain to a school nurse that every person recovers at different speeds after a seizure, I could walk and didn’t need to nap, even though that is legitimately what the only other person she has cared for with epilepsy needed. I didn’t need that! But her assumption made that a really tricky conversation to have. She didn’t understand the individuality of every person’s epilepsy. I also had to try to explain to a teacher that trying to force someone into the recovery position against a radiator isn’t a great idea whilst they are a) still clearly seizing and b) clearly conscious. Trying to have that conversation with someone in a position of authority over you is really difficult. Especially when they think they are doing the right thing. She’s doing what she was taught. She’s being the helpful adult, it didn’t seem to matter that the child in front of her was having a conversation with another member of staff about how long it would take to recover, because she was the only person in the room who was first aid trained. As teenagers we need to be given more credit, and allowed more ownership that we know our epilepsy, better than everyone else thinks they do. Assuming that because you are the adult in a situation, you know more about someone’s life than they do is one of the reasons why teenagers with chronic conditions withdraw. My plea as someone who has been through this is that if you are ever in that situation, you respect the teenager enough to let them have a voice and educate you on their own personal experience, because everyone has their own story with individual needs.

There have been times where my patience has been well and truly tested by situations. Often people don’t realise. They think they are being helpful. However, as a young pre-teen it is sometimes hard to appreciate that. Looking back, with the blessing of hindsight, I know that there are times, that the only reason I had the patience and ability to cope, and to not get angry in some cases was God’s grace giving me the ability to. Whether it was teachers, or ignorant kids in my class, or people who can’t get a specific image of what epilepsy should look like out of their heads as I tried to explain how to handle my specific seizures, I know there have been times where it has been God giving me the ability to walk away, or remain calm because I would not have been able to otherwise. Patience in these situations is a skill that develops with time. All we can hope to do is try to slowly but surely educate these misconceptions.