This post is part of the Epilepsy Blog Relay™, which will run from Nov. 1 to Nov. 30, 2017. Follow along!
Oh my epilepsy
Epilepsy has changed my life.
I’ve grown up with it, it’s found a big place in my life, and I have made adjustments. It has changed my life in so many ways, but I think it has made me who I am today.
Over the years as my epilepsy has developed into more complex seizures, I have developed as an individual. I am more confident, funnily enough.
The early days
I was only young when I was diagnosed — the years of seizures came with rounds of hospitalizations, monitoring, drug changes and dosage adjustments. I’d be lying if I said I didn’t have days when I wanted to just close my eyes and disappear. It sounds awful, but that is how I felt when the medications were hitting me left, right and center with side effects. I have never wished for a miracle cure, but for happiness and closure for my family. Truth is, I’m grateful for this life, and I remind myself to take pleasure in the simple fact that I am alive.
Time to talk about it
I feel like it’s only these past couple of years that people really talk about medical conditions. Illnesses and such are so taboo, and I myself experienced the feeling of not wanting to talk.
I used to hide things because I was worried that people would be scared of me or not want to work with or even be around me. When I first started on a medication that made me so low, but I didn’t want to tell anyone. I was able to blog about my feelings to online friends who didn’t even know me at the time. Then one of my real life friends found my post and that was it. My group of friends knew my darkest thoughts about how Epilepsy made me feel, and then my family soon after. I was surprised when this turned out to be a good thing. That was when I realized I needed to speak up, I couldn’t keep things locked up anymore because I was just falling apart.
I turned to writing etc. and learned to speak openly and honestly about the condition, both to those around me and on social media. My seizures can just happen but most the time I do get an aura, but it would be so much better if everyone could recognize seizures and know how to help.
Change can be good
I have become someone who is much more confident. Speaking out has really helped my confidence and my safety, as well as my family’s mental health because they all suffered from anxiety not knowing how I would get on at college, whether I would secure myself a job and such.
When my column started to get more recognized, I met more and more people. It was sad for me to hear that so many with epilepsy feel embarrassed talking about it, and worry that they will be discriminated against if they do, so I wanted to kick start more awareness by sharing my story so that others could feel less anxious and alone.
I wanted to change the relationship of isolation and Epilepsy. It is certainly nothing to be embarrassed about and the findings I found along the way highlighted why speaking out is so important to those living with epilepsy. The more we talk about epilepsy, the more we can challenge common misconceptions about it and offer the general public a clearer idea of what epilepsy is. It was hard but once I shared my story the once, everything fell into place.
Despite it being a tough journey, it has been an incredible one and I truly believe Epilepsy has made me the person I am today.
Epilepsy is in my life but it doesn’t own my life.
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25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England.
Emily’s Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10.
Based in UK.