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Why we must all keep talking on Purple day

Created:

26 March 2020

Purple day feels very different this year but that is why it is all the more important to keep talking, says Rachel Perowne, our Director of Medical and People Services Development.

So it is March 26th and Purple day. But with all our attentions focussed on the coronavirus and just ensuring that we, and our loved ones, remain safe and healthy, it is a very different Purple day in comparison with other years.  With everyone confined to their homes, it is indeed a Purple day like no other.

March 26 – the international day of epilepsy – is driven by, and thrives on, social media. And for that we are grateful. But its real joy and resonance lives out in the community among friends, acquaintances and strangers.

It is a chance to start a conversation about epilepsy, increase people’s understanding of what it is like to live with the daily threat of seizures, and to empower them to know what to do if they see someone in public having a seizure. Calm. Cushion. Call. Our seizure first aid campaign was designed specifically for sharing on days like today.

The day is also a chance to support other people with epilepsy by raising essential funds for our research projects and services such as our Helpline. Our supporters are incredible. Thanks to all of you, we will be extending our Helpline service to a full five-day-a-week operation from 6 April. And in these troubled times, we are relieved that we will be able to be there throughout the week when you need to talk.

Purple day on social media

But, understandably, we have had to scale back Purple day, confining it to social media and recognising that this year, all social gatherings are off.

We know how disappointed many of you have been to have had to cancel coffee mornings, bake sales, non-uniform days. There is a huge amount of preparation that goes into any community event and we would like to thank you, from the bottom of our hearts for all the hard work you have put in.

Many of you are finding ways to move your fundraising events online, and again a huge thank you from all of us. Facebook Fundraisers are a wonderful way to raise money with friends. We have lots of details about how to do this on our website www.epilepsysociety.org.uk and it is actually a very simple operation.

Starting the conversation

Fortunately, the conversation can live on through social media. And while it’s not the face to face conversation, cup of tea in hand, head thrown back with laughter or eyes focussed as personal experiences are shared, it is global, it is 24/7 and everyone is welcome.

Among the biggest challenges of the coronavirus are the social distancing and self isolation. As humans we thrive on contact and conversation, body language and that look that can say a thousand words. But isolation is all too familiar territory for many people with epilepsy whose seizures mean they are afraid to leave the house.

None of us are born to live hermit-like existences. We need other people even if just to disagree with them. The television and radio are wonderful things. But they don’t talk back and they never understand.

Our key message on Purple day is ‘start the conversation’ and we would beg all of you to make this your priority today and going forward.

Volunteers to talk to

If you live alone and rarely see anyone, make yourself known. Today, more than at any other time in living history, there are armies of volunteers just waiting to get in contact. There are people willing to talk on the phone, by Skype, by email. There are schools full of keyworkers’ children, sitting pens poised, ready to write to anyone who is lonely and feeling afraid.

Get in touch

The important thing is not to wait for someone to get in touch. Make the first move. Call your local surgery, church or community group and tell them you are on your own. They will be able to connect you with someone who could drop off some shopping, or a prescription, or have a chat as described above. Now is the time to make new friends.

There are also several umbrella organisations that are co-ordinating volunteers nationally and will able to point you in the right direction in your area. Just click on the links below and someone will be able to help you.

 https://covidmutualaid.org/

https://acorntheunion.org.uk/corona/

We have a FAQ around coronavirus and epilepsy on our website from our neurologist Dr Simona Balestrini. And of course our Helpline 01494 601400 is open on Mondays and Tuesdays from 9am-4pm and on Wednesdays from 9am-7.30pm. From 6 April this will extend to Thursdays and Fridays also, 9am-4pm. You can also email us at helpline@epilepsysociety.org.uk

So, to all our friends out there in the community, from all of us at the Epilepsy Society, we are sending you all our good wishes on Purple day. Stay safe. Stay strong. And get in touch.

Rachel Perowne

Director of Medical and People Services Development

Epilepsy Society