Who's Ready for Purple Day?!
It's not long to go!! Purple Day1 is the 26th March each year and it's a great opportunity for the wonderful people (like you) to speak up more than normal about epilepsy!
Thank you to the amazing Cassidy Megan2 for founding it!
Epilepsy3 is a chronic condition which affects us every day, even for those who have controlled seizures (which is fantastic!). Even those with fully controlled seizures have to take drugs with side effects each day, they are worried about "what if", etc. (see the wonderful blog4 by Clair Cobbold5 about this). Then for those of us with only partially controlled or totally intractable epilepsy... it's a totally, full-on ongoing battle.
Rather than us use this as an opportunity to moan, I see Purple Day as an opportunity to educate. We can be talking about the masses (hey your blog/post might go viral), or it could just be your mum, dad, friend or partner.
- Get 100% up to date on epilepsy research6 and news7 (this really helps re confidence in communicating)
- Learn the up to date facts and terminology8 (this really helps re confidence in communicating too)
- Get an epilepsy wristband/t-shirt! I have 3 so far, from: Epilepsy Society9, SUDEP Action10, and more coming in the post from Epilepsy Action11, Epilepsy Research UK12, and Epilepsy Connections1
- Contact any of the below charities/your local epilepsy charity to see how you many be able to help them on the day or even prior/post!
- Don't get too excited (sigh...!) and make sure that you get enough sleep!
- Remember that if someone doesn't want to hear about epilepsy when you speak to them, it isn't necessarily because they aren't nice people. They may be ultra-busy (you can try/arrange another time to speak), they may be scared (which is down to ignorance) or they may be someone not worth talking to
I have a quick story about discrimination here (which was and still is funny when I think about it!):
I was at (ironically) a mental health fashion show event last year. I was speaking to former colleagues who I hadn't seen in ages about what they'd been up to, how their families were, jobs, etc.. They kindly asked me about my life so I told them about traveling the world (hard life I know) to talk about epilepsy and comorbidities, as well as the wonderful people I'd met through Epilepsy Sparks. What was hilarious was that a young man behind me started openly ridiculing people with epilepsy and saying how "those people" just fell to the floor, started shaking and they made him laugh. My response: "Really?!" (with a dangerous smile on my face!). Opportunity here!! Let me just say that I told the young man that he was obviously being discriminatory because of his ignorance and insecurities, that this was sad and that he was boring me. I turned around to continue talking to the rest of the group (they had a look of shock on their faces!). Minutes later, the poor young man, suddenly all meek and mild; begged for me to answer some genuine questions that he had about epilepsy. To which I responded: "Sure, I can do that. That's fine. Just don't choose to be an immature, discriminatory homosapien and we can do that.".
Purple Day I see as an opportunity for many of us to educate others, to make epilepsy less scary both for us and for others, to eat cake (hey we might make some to raise money for an epilepsy charity, right?!), go for a walk across a purple-lit bridge (ok not all of us have these opportunities but we are getting there!) and more. And if you aren't ready or don't want to talk about your epilepsy at all; that's ok too. Just know that many of us are politely educating others, eating the cakes and fighting the cause for you. With a smile. Remember that there are at least 65million of us in the world with epilepsy. As alone as you may feel, we are thinking of you.
Epilepsy Sparks CEO - featured on BBC, HuffPost, Sky News & More.
Does your company require an inspiring speech or some consultancy on epilepsy, mental health, and diversity & inclusion? Contact: firstname.lastname@example.org
1. Purple Day: http://www.purpleday.org/
2. Cassidy Meghan https://twitter.com/cassidymeganpd
3. Epilepsy Sparks: https://www.epilepsysparks.com/epilepsy/#epilepsy
4. Epilepsy Sparks blog: https://www.epilepsysparks.com/epilepsy/#epilepsy
5. Epilepsy Bumps: https://www.epilepsysparks.com/epilepsy/#epilepsy
6. Epilepsy Research UK research portfolio: https://www.epilepsyresearch.org.uk/research/research-portfolio-2/
7. Epilepsy Action blog: https://www.epilepsy.org.uk/about/blog
8. Epilepsy Action facts: https://www.epilepsy.org.uk/press/facts
9. Epilepsy Society merchandise: https://www.epilepsysociety.org.uk/shop/merchandise/branded-merchandise/wristband
10. SUDEP Action merchandise: https://sudep.org/shop
11. Epilepsy Action merchandise: https://store.epilepsy.org.uk/
12. Epilepsy Research UK: https://www.epilepsyresearch.org.uk/
13. Epilepsy Connections: http://www.epilepsyconnections.org.uk/