Stick It in Your Head, Joe – It’s Time to Network

If I’m going to make this website work, then it’s time for a good chat. After counter-parting in a few activities through Epilepsy Action, I’ve already sent the charity’s local representative an email about my new website. He says he likes what I’ve done, wishes me well and told me about a new group meeting in Manchester.

Unfortunately, I can’t reach the group meeting this month, but attending one of Epilepsy Action’s Near Me meetings is something I might do later in the year. Right now, I’ve got two jobs to manage, and time isn’t always on my side.

There are other ways to meet people though, and more than anything, I need to network. My family and friends are now more aware of my new plans to raise epilepsy awareness, but I want to interact with other people. When it comes to epilepsy, these other people need to share my views and have a continuing interest to keep updated on what I’m up to.

A Big Shout

Formally a shy guy, 5 years ago I would never have guessed myself to be shouting out, but it’s got to be done. It’s only right to mention a few other blogger individuals who have written about epilepsy too, looking to promote wellbeing and educate others.

Upon A Sunshine is the blog of Louise Glover, another person with epilepsy from the UK looking to raise awareness. She started her blog in 2014, has over a thousand followers on Twitter, and on her about page states that she likes to blog about ‘Anything and everything – but mainly about healthy living, travelling and epilepsy!’. Louise still seems young and appears to carry an all-round positive attitude towards life.

Living Well With Epilepsy is now a well-developed media equipped website, but started off in 2009 as a simple blog written by Jessica Keenan Smith. Jessica has epilepsy, and initially only wanted to speak out to somebody else with similar frustrations, side-effects and troubles. Instead, she ended up finding a world-wide community of readers in need of news and information on epilepsy.

Living Well With Epilepsy offers good advice and information, has a few different writers and also offers individuals the opportunity to share the stories of their lives relating to epilepsy.

Becoming a Mum with Epilepsy

This blog was started in 2011 by Clair (I’m currently unsure of her surname). Clair was diagnosed with epilepsy at the age of 19, and decided to start blogging in support of Epilepsy Action’s pregnancy campaign, after around 10 weeks of her expecting her first child Riley. Since then she’s produced an excellent source of information about the challenges that any mother with epilepsy might face. Claire also won the Epilepsy Action Volunteer Award in 2014.

Beating Epilepsy

Updated by his parents, this blog follows the story of Cole, a little boy who suddenly started having atonic and absence seizures when he was 10 months old. After that, his parents spent two years trying to manage his epilepsy, before brain surgery was used in September 2011 to remove his left temporal and occipital lobes.

Although Cole still has a few seizures and is learning at a slower pace, he’s now stopped having what once was 150+ seizures a day before surgery. His parents (their names I’m not sure) update his blog every few months to mention his developments.

The Art of Living With Epilepsy

Since diagnosed in 2010, it seems Jade (again, surname unsure) has made a great effort to raise epilepsy awareness by writing over 300 articles for her blog. She hasn’t updated it for over 12 months now, but previous efforts can only be appreciated, and I wish her all the best with her career in photography.

Other Supporters

Along with who I’ve mentioned on this blog, there have been other bloggers troubled with epilepsy who have made attempts to spread wellbeing. I thank them all, but if blogs aren’t managed, I know from experience that they don’t always live forever. If I was to go through every little website I could find it would take years to finish this article.


Getting Personally Involved

After researching what’s already been done, it’s time for me to get involved. I don’t see any of the other blog writers I’ve mentioned today as competitors, but more like potential colleagues. I only hope I can contact them, introduce myself, learn what I can from them and become more educated about epilepsy.

I’ve got my own experience with epilepsy and I know how it feels to live with it. But it’s a complicated neurological disorder: to help manage more of the many problems that occur, I need to listen to other epileptic individuals about their experiences in life with it too.

Image via Alexander Kaiser,


2 thoughts on “Stick It in Your Head, Joe – It’s Time to Network

  1. Hi Joe –

    I have epilepsy as well and while I don’t write exclusively about it, I have quite a few posts about epilepsy. (I do a Q & A site about relationships and sexuality.) I’d love to network.

    Liked by 1 person

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