“I guess you could say I wear a lot of hats – daughter, sister, fiancée, gamer, cat mom, and thrown into the mix is nocturnal epileptic. However, I don’t let that define me. It has meant that at some points in my life I’ve had to do things differently. I had to pass up sleepover invites when I was younger, to make sure that any roommate or partner of mine would know what to do if anything happened, to be extra cautious when taking solo trips, etcetera. But in a weird way whilst yes it’s not great to have a chronic condition, I absolutely see the silver linings in it because it’s become a natural filter to ensure that only the people who really care about me stick around. Everyone reacts differently when they learn about it, and that’s okay, but it does tend to reveal who has the capacity to look past the diagnosis and see me as a whole person rather than a condition.
My immediate family – who were there when I was first diagnosed at 9 years old – have stuck by my side and still check in regularly to make sure everything’s good and under control. My ex-roommate and I are still super close because she would always make sure I’d taken my meds before bed. My partner is super supportive and has been helping me find the perfect medical cocktail to make sure I have the least amount of nocturnal episodes possible. Stuff like that. I don’t tend to actively bring it up in conversation but it’s an immediate giveaway to whether something as small and undefining as epilepsy would scare someone off. I’ve had countless reactions – some asking me whether I can play games or watch movies with flashing lights, others saying that their dog or uncle is epileptic too, and even a nutritionist who taught me that epilepsy was the trigger to inventing the keto diet. Every conversation is different.
What I’ve learned over the years is that while epilepsy is something I live with, it’s never something I’ve had to face alone. There are definitely struggles that come with managing a chronic condition, but I’ve been incredibly fortunate to have people around me who genuinely care and want to help. Because of that, even on the harder days, I never feel unsupported throughout the journey – and I don’t even have the words to express how grateful I am for everybody who has helped me along the way.”
Bella
