We’re reaching the end of Epilepsy Awareness Month, but it’s never too late to learn more about a condition that affects 3 million, or 1 in 26 Americans . Epilepsy is a neurological disorder that causes seizures, and often, witnessing someone having a seizure is more stressful for a bystander than it is for the person who is having one.
Today, I’m thankful to have Caitie here to share her personal story of living with epilepsy—because i think there’s a lot more value sometimes in stories rather than lists of statistics, symptoms, and treatments. Thanks for sharing, Caitie!
KM: Hi Caitie! Happy to have you joining us today! Tell us a bit about yourself.
CS: I’m a grade twelve student in a little town called Summerland [British Columbia]. I live with my parents, my brothers Bobby and Matt, our dogs, Sam and Max, our cats, Indie and Bellamy and our leopard gecko, Zipper. I love singing and painting and sketching and dancing around the house really awfully. I love going on long walks, especially in the rain and listening to music really loud. I like laughing and talking to my friends and going on adventures. But my ultimate favorite thing in the world is storytelling. I love storytelling in every way shape or form. I love talking to people and hearing their stories. I love reading books or watching TV and movies. I love telling my story and making up stories! I love writing. Books, stories, songs, poems, my journal, anything goes.
Huge fan that you have a gecko—also a huge fan of dancing terribly around my house!
Tell us more about your epilepsy story—when were you diagnosed, how did your diagnosis affect you? What about your family?
I was diagnosed with Epilepsy when I was 5 years old. Since I was so young, I never really put much thought into the fact that I had this disorder. My family never treated me any differently and for the most part I could do everything that my brothers could do. I was really lucky, because my seizures were really well controlled.
The first time I had a seizure at school was probably the first time my diagnosis really affected me. I remember afterwards my friends would come up to me and tell me how scary I looked or tell me that they didn’t want to stand by me anymore. It was pretty much the first time that I realized not everyone was going to understand what I was going through. Some people had no idea what a seizure looked like, or that seizures even existed and witnessing one could be scary for them. Needless to say, I was still really hurt and began to worry about having another one all the time.
How has your treatment changed over the course of the time you’ve had epilepsy?
As I mentioned earlier, since I was diagnosed so young, I’ve never really known any time where epilepsy wasn’t a part of my life. In many ways I’m really grateful for that because I haven’t had to learn to adapt to the changes that epilepsy brings to someone’s life. However, if I hadn’t been diagnosed, my life would be totally different from what it is today. My epilepsy has taught me not to take my health for granted. It has also taught me to be more compassionate towards others and try to understand what hardships they face as well.
I’ve been on and off medications a lot in the past years. I would try different medications, but was always extremely sensitive to the side effects. I was on one medication for a really long time and I got to the point where I would rather be having seizures than deal with the side effects. So that began a chain of new medication I tried out. They all seemed to help my seizures but between having allergic reactions, and severe, dangerous changes in my mood I just couldn’t find the right medication for me. Then I tried changing my diet. I found some articles online that said eating a low-carb diet could reduce seizure activity and I was desperate enough to try it out. Of course, I didn’t think it would actually work but soon I was completely seizure free! Unfortunately, then the diet began to give me stomach problems and I had to go off of it. But the good news? I stayed seizure free. I’ve now been seizure free for a year and a half! I feel like the luckiest person alive. Having said that, it is still a constant battle. Lately I had to stop driving because of some fluke-y things going on inside my brain, so I’m just hoping the seizures don’t return.
For a lot of us without the condition, there’s a lot to learn about epilepsy. What do you wish people understood better?
There are many things I wish people understood about epilepsy. I wish people knew that it’s not a huge emergency every single time someone had a seizure. I wish they knew how epilepsy can have a big impact on almost all parts of a person’s life. Mostly, I wish they knew that it’s ok to talk about it. I would love it if my friends asked me questions about my epilepsy. For some reason a lot of people think it’s really awkward to talk about. For the longest time I would never talk about it, and I still feel really awkward mentioning it a lot of the time. I’ve learned that it is so important to move past that awkwardness and just talk to people. Especially friends. Because just talking to people and educating them can make such a big difference on how everyone views people with epilepsy.
I absolutely agree. You’ve touched on connecting with your friends a bit, but what about others with epilepsy? Has connecting online been a part of your patient journey?
Connecting online has been a huge part of my journey! It was the main way I began talking about my epilepsy. It was the end of grade 9 and I had to go to the hospital for a week long EEG, and I decided that I wanted to create a website about my journey with epilepsy. I called it Sandpaper Smiles. Through that website I’ve got the opportunity to meet countless individuals with epilepsy both online and in person. It’s really helped me get through the tough times. Not only have I been able to chat about my epilepsy way more openly, but things have been really put into perspective for me. There are people who are a million times worse off than me, and that makes the drive to talk about it even stronger. I don’t want people to just walk by someone who is having a seizure on the street anymore. I don’t want people who are having countless seizures to be misunderstood by society. I realized that I am incredibly lucky to have a voice in this and if it wasn’t for connecting with so many others, I’m not sure I would ever have been able to talk about it.
Thanks Caitie! To learn more about Caitie, follow her on Twitter at @SandpaperSmiles. To learn more about epilepsy, visit Caitie’s site, or CURE Epilepsy. For those living with epilepsy, it’s important to identify any specific medical needs you have in the event of a seizure—an epilepsy medical alert bracelet or necklace can help communicate your needs if you can’t.
Also available from My Identity Doctor are purple epilepsy awareness items—a great choice to show your support for a friend or family member living with epilepsy.