This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!
It was a crisp fall evening when I heard the doorbell ring. Thinking it was an early ‘home from school’ surprise from my daughter, I ran up to the door to get my usual squeal and tight hug. Instead I was greeted by a young, energetic teenager talking to me about a donation program for girls. Being #thedayofthegirl and my passion around gender and equality, I was all ears. [Especially, when he asked me to confirm if I am 21…why thank you, tell me more ;-)]
As we discussed the program, we got talking about how I spend my time these days. I mentioned the work I do around epilepsy awareness to which he uneasily said, “Oh, is that the thing with the lights?” While he was somewhat right, I found his answer to be quite interesting. But, I also understood how he could be unsure about what epilepsy was.
Why is there a need to raise epilepsy awareness
In reality, most people are not aware of an illness until it touches them personally. Given that epilepsy is not a disease that people disclose very readily, it stands to reason that the majority of our population would not know how many people are impacted by it. 1 in 100 people in Canada, just in case you were wondering. In the US, approximately 3.4 Million people are living with epilepsy and worldwide, well that number is estimated to be 1% of the population.
Information is power
So I jumped at the opportunity to educate him about it and did a whole information session! He was amazed by all there was to it, thanked me for my openness in sharing my experience and went on his merry way feeling more empowered. That interaction got me thinking about how we can use creative ways to spread the word about epilepsy and in turn help people understand epilepsy better.
Share your story
The biggest way I raise epilepsy awareness is by talking about it and by sharing my story. I am an open book as a person. What you see is what you get. So, it probably comes more naturally to me, than to someone who is more private. Whether it comes easy or not, there’s no denying that people love stories and what better way than to tell your own! Talk to your family, your friends, your co-workers, your neighbours or sometimes even strangers, like I did in my experience above. It will be a great emotional outlet for you and leave them with something to think about and share forward.Share your story
Share your time
Another way is by volunteering with my local epilepsy non-profit. These organizations have several programs that support fellow epileptics, from social interaction/recreation groups to entertainment events and new initiatives that reach out to the public and educate them about epilepsy. Think about how your skills might contribute toward the cause and help them to further their message. You not only work towards a common cause and help the community, but you also welcome support, make connections and enhance your own skills.
I think about activities I like doing and try to incorporate ways of highlighting epilepsy within those aspects of my life. Whether it’s spending time with my daughter and painting a pumpkin purple or showcasing the book I am reading to de-stress, anything goes. So give a thought to the many interests you have and how epilepsy can play a role in some way. It fulfills your passion, initiates conversation and indirectly gets the word out.
Spread the word online
It goes without saying in this day and age that social media platforms are a given. I use every avenue I have, to get my message out there. I try to participate in online challenges/initiatives and promote them the best I can. I connect with people online who share the same interests as me and discuss how we can help the community move things forward.
And the last one couldn’t be more obvious; it’s what I am doing right now! I write about my story and experiences with epilepsy through blogs and articles and share them with the world. I have always enjoyed reading and writing but blogging has never been something I have done before. Over the last year, in my attempts to get the word out, I decided to make the leap. I guess my education in English Literature finally paid off 😉
So there you go, that’s how I spread awareness in my own way. If you have any new ideas about raising epilepsy awareness, I would love to hear them as well. After all, there is always strength in numbers and our collective efforts will give power to more voices that need to be heard.
So if you are ready, go ahead, share your story, the world is waiting to hear it!
Share your story