Since going public with my condition and no longer trying to hide or avoid it, I’ve noticed it comes up in conversation a lot.
I was at a concert recently where I befriended a pair of friends who I happened to be standing next to while we waited for the show to start. This night was no exception to my observation as it came up once again while talking to my new friend Taylah.
She initially asked me how the lights at the show would affect me which is a standard question I get whenever somebody finds out I’m epileptic.
This isn’t the part of our conversation that stood out to me as I explained the effects photosensitive triggers have on me.
She then asked if I had anything along the lines of a medical ID on me.
I explained that I have a medical ID on my phone but it wasn’t until later that this moment stood out to me.
It was a kind and caring gesture that meant she knew where to access my medical emergency information should she need it later in the night.
It was a question that friends I’ve known for years haven’t even thought to ask about. To most of my friends reading this now knowing of my medical ID on my phone is new information that they’re only finding now.
It’s not just the question that stands out to me though; it was the way she asked. She was kind and the tone she used didn’t make me feel any different to her, or anybody else in the venue, as a person. Although I know it’s typically an accident unnoticed by the person making it, I’m often singled out by people speaking to me about my epilepsy.
A lot of people are inconsiderate about the questions and comments they make towards people with epilepsy while others are careful and thoughtful with what they say yet they often speak with the same tone and attitude as each other.
I grew up with my mum telling me that “it’s not necessarily what you
say, it’s how you say it” and that’s exactly the problem in this situation.
Rather than asking a question such as ‘do you have a medical ID on you in case something goes wrong?’ in a manner that they would ask somebody ‘do you want a drink of water before you go out and play a game of soccer?’ people tend to ask the questions, such as the first example, in a manner that makes the person they’re asking feel like they are different.
I know it’s not intentional but it makes you feel very self-conscious, you feel like you stand out in the crowd and are different to everybody else despite statistics saying that there would be many epileptics in the same room as you.
A lot of this comes down to the fact that being epileptic increases your chances of developing anxiety, which is something I’ll talk about another day, so I’m sure if you’re reading this and have experience with anxiety you’ve probably noticed certain things that I’ve mentioned. You’ve probably noticed anxiety symptoms that I’ve mentioned and can relate what I’m saying back to certain experiences of your own in different situations.
If anything that just enforces that people with epilepsy are still the same as
the average person you meet they just experience the same things you do in
different situations that you mightn’t have experienced yourself.
I’m not sure if it was intentional or if it came naturally to her but when Taylah asked about my medical ID she asked so nonchalantly, as if she were asking what my favourite colour is, and I was extremely comfortable talking to her about everything because of that.
The next part of our conversation about my epilepsy stood out to me immediately and involved a message that I know I have to share with anybody else going through their own journey with epilepsy.
Taylah asked if I was scared about the night and how I’d react to the lighting and what not.
It was a question that made me think, I had to think about my answer and how much I wanted to share in response. Maybe I shared too much for what Taylah was expecting, who knows, but I was comfortable talking to her.
I was honest.
The truth is I was scared, a lot of things scare me in regards to my epilepsy, and the anxiety because of epilepsy that I mentioned above is really never any help.
The lighting used that night could have had no effect on me, it could’ve had some small effect on me as it usually does or it could’ve been the night where, ‘the straw broke the camel’s back’ and, I had a photosensitive triggered seizure. There’s no way to tell how my body will react until it’s already reacting.
When I go to a concert, no matter how big or how small, I’m taking a risk and challenging my body. That will never change and it will never be any less scary or risky.
Something I was too young to truly understand until recently is how it’s also scary for my mum to drop me off at a venue knowing those risks.
I’m sure you can tell by this point that going to a concert is truly all kinds of scary for more than just me and that’s not even the half of it.
However as I was thinking of what to say to Taylah I remembered something that I was only told in February of this year.
I told Taylah that it is scary and it never gets easier but one of my neurologists told me that “if you can’t live and enjoy your life freely then I’m not doing my job to help you manage your epilepsy so you can enjoy life properly and something needs to be changed”.
I was diagnosed with epilepsy in 2011 but I was only told that in 2017. It’s a very strong and true statement that would’ve helped a lot had it been pointed out to me sooner. That message has stayed with me ever since and it’s a message I’d like to share with others.
It’s empowering to people with epilepsy, a reminder that they can still enjoy life, and it’s a reminder to friends and family members not to unnecessarily take away independence from somebody with epilepsy.
Taylah seemed to approve of the answer I gave to her question and the conversation moved on to the excitement we shared for the show that was about to begin.
Taylah never made me feel abnormal while or after we were talking about my condition and I’m extremely thankful for that.
Taylah if you’re reading this, that night was unbelievably amazing and fun and your kindness was the cherry on top of a lactose free sundae. I hope others can learn from your small but significant act of kindness.