(Edited to add the link to the radio interview I did today with David Kirton CKOM: Listen here)
Today, March 26th, is International Epilepsy Awareness Day. We wear purple to support those affected by epilepsy. Approximately 300,000 Canadians have epilepsy. 1 in 26 people will be diagnosed with epilepsy in their lifetime.
I am one of them.
I was diagnosed with epilepsy almost a year ago. Ask me when I accepted that I have epilepsy and I would say very recently, and I’m still getting there.
Each day in Canada, an average of 42 people in Canada learn they have epilepsy. Epilepsy is a physical condition characterized by sudden, brief changes in how the brain works. It is a symptom of a neurological disorder – a disorder that affects the brain and shows itself in the form of seizures.
Due to the stigma surrounding epilepsy and the prejudice with which society has historically treated people with epilepsy, many with the disorder are reluctant to admit it or to seek treatment. So, the prevalence of epilepsy is likely much higher.
I 100% agree with that statement and am positive there are many people in your daily life, and even many celebrities and people in the news who have this disorder but choose not to share it. I was one of them, with only a few people outside of my family made aware.
I didn’t want epilepsy to make you look at me different. To treat me differently or worry I’m going to seize in front of you. Or wonder how I “got it” and if it is contagious (my epilepsy is idiopathic, there’s no known reason why I have epilepsy and no, it’s not contagious).
My diagnosis is nocturnal epilepsy, meaning I have seizures in my sleep and am completely unaware of them. It’s Kirk – my husband, my best friend, and now my caretaker – who has been there for them, rubbed my back, wiped my face, and then gently explained it to me the following morning.
After a seizure, I need to sleep. A lot. And I’m generally pretty tired, sore (think of every muscle in your body tensing and releasing…it’s like a full body gym workout, followed by being run over by a truck feeling) and sad. And then, after about a week of recovery, I am back to my new normal. My memory is affected. My confidence has taken a big hit, and my anxiety is flourishing. I am a girl that thrives on control and organization and this has turned my life upside down.
I have some memory loss. In the summer while I was being diagnosed, my driver’s license was suspended for a few months until my doctors determined WTF was going on with me. For a long time I was scared to run alone (which is why my first 5K in September was even more of a big deal). I did perhaps too much Googling and scared myself.
But. I’m here. And I’m fighting. I have faith in my neurologist and healthcare team, and am starting a new medication that I am hopeful will take away my seizures forever. People with epilepsy can and do live seizure free lives with medication. It’s just that you don’t hear about them because of it (again back to those statistics!)
I am going to be one of them.
So, why share now? Because I want you to know. One-third of people with epilepsy experience depression and anxiety. People with epilepsy are also 22 percent more likely to die by suicide than the general population.
I need you to know, I need people with epilepsy and other health conditions to know, that there are people like me out there too. I’m human. I cry and I get scared and I definitely get angry and feel the “why me” sadness. But I’m also feisty as hell and intend to live a pretty amazing life for my kids. To show them how nothing will keep me down. I suppose I’ve found my cause.
Kudos to you for sharing your story, Tenille!
I have a family member who experiences petite mal seizures from a calcium deposit in the brain (possibly from a trauma) so I understand first hand how scary it is to get that diagnosis and not be sure of WHY it’s suddenly happening.
I do know that with the right medication combo, you can maintain a totally normal life & continue doing the things you love. I understand it is still frustrating and exhausting, but it’s a not a stop on life by any means!
Thanks again for sharing ♥
Thank you for sharing too! It’s good that your family member at least knows the possible ‘why’ on the seizures, though at the end of the day it doesn’t stop the seizures when you know. Somehow, it just seems to help knowing WHY.
Digging up an old post because I just got back from the ER after having my first seizure. Only time will tell if it’s epilepsy and I have more, but I remembered when you posted this and came for some ‘real life info’. Thanks for sharing:)
Heather (mmmisformommy in a past life)
Heather! Oh my goodness! Please feel free to email me or FB me anytime!
Thank-you for sharing this part of your story! I had no idea the numbers were that high! I only know of 2 people in my circles with epilepsy but reading the statistics makes me feel like there are likely several more that I just don’t know they have. One of my daughters had seizures when she was little and I frequently wonder if they will start again. The doctors couldn’t determine the cause of the seizures she had and she hasn’t had one in about 5 years. Her post-seizure symptoms were the same as what you described
It’s surprising how many people tell me about their children having seizures, or they themselves having seizures in childhood but they’re gone now. It’s apparently quite common, who knew? I’m sure it’s absolutely terrifying for a mama!
Thanks for sharing your story. As a teacher, I’ve met several students who have epilepsy and their strength has always amazed me. Keep fighting. I hope you find a medication that helps.
My teacher friends say the same – I’m sure many have witnessed seizures in their careers (I, myself, have never actually witnessed one!)
I’m a Gormley listener so have also listened to you too. Best of luck and happy health as you journey down this road. Thanks for sharing.
Thank you Linda! (Thanks for listening to me too!)
I just seen your story come across my twitter feed. I hit the link and my heart sank. I wish you did not have to deal with this, nor your husband and family. I hope you get the help you need and it gets totally under control. My son has had seizures, epilepsy since he was an infant. He has had different kinds over the years. He has other medical issues that bring them on. Today was a day of a long medical appointment for him and I was browsing Facebook as I sat in the waiting room and across my feed came a reminder it’s epilepsy awareness day. My heart sank. To me, it’s a very important day. How could I forget. Down I looked at my shirt, and lucky me, it was pretty close to being purple. Thank you for sharing your story. I wish the very best for you!
As a parent or family member of someone with epilepsy you can *never* forget, it’s always with you, so simply not realizing it’s world epilepsy day isn’t a big deal – every day is epilepsy day right? Thank you for your kind words. I’m also sending some positive vibes (and high five’s) to you and your son!
<3 Thank you for sharing! I had no idea how common it was!
Happy to start spreading awareness! 🙂
Bravo you! Bravo for sharing. Bravo for being brave. You are awesome and you know what? You will figure out how to manage this. And Kirk is the best. XO
He really is. 🙂
Thank you for sharing your story. My father was having seizures and it was the most terrifying thing for him and those who love him. In his whole life no one really talked about seizures and so he was more afraid of the diagnosis than anything else. I think it is important to talk about it and share stories like this one so that when you or someone you love experiences them they know they are not alone.
Yes People with epilepsy can and do live seizure free lives with medication. My friend daughter had Epilepsy since she was a teenager and is seizure free with the right medication. Didn’t know the number were that high.