As a social media entrepreneur who loves travelling, physics, cosmology, neurology, psychology, reading and playing the piano, many people are also surprised when I tell them that I have epilepsy. Diagnosed aged 10 and then after trying many drugs that were ineffective, I had brain surgery (temporal lobe resection). From my late teens I've been open about my epilepsy, but since my operation in 2013 I've become even more open; through media volunteering with Epilepsy Action and my blog: epilepsyisabitch.co.uk
When Chantal from Epilepsy Action's press team called me to ask if I wanted to be put forward for the BBC 3 film "Things Not To Say To Someone With Epilepsy" I didn't have to be persuaded! I had so enjoyed their previous videos and saw it as a brilliant opportunity to improve public understanding and reduce fear of epilepsy.
Despite the condition having been around since the dawn of time, many people are still not sure of what it involves and consequently, many people with epilepsy continue to be challenged by today's society and face discrimination. Having the opportunity to help educate through humour and on such a wide platform was a great opportunity and I was delighted to later hear I had been shortlisted.
Upon arrival at the film set, the very friendly film crew introduced me to my partner Dan, who I was filming with. Dan and I started chatting and when of course epilepsy came into conversation, it turned out that he had also had the surgery! We had an interesting conversation comparing our seizures and indeed some stories regarding the horrible presumptions and reactions of some family, friends, the public and work colleagues.
Filming commenced and we answered (with a sigh!) ridiculous but very common questions faced by those with epilepsy, including: "Have you ever had a seizure during sex?", "Are you possessed?", "Where's the worst place you've had a seizure?". I wanted to help convey that everyone's experience with epilepsy is different and that most presumptions are untrue.
All seizures are horrible to experience; mentally, physically and emotionally but the seizures themselves are not the only struggle faced. For example, the fact that many people with epilepsy cannot drive is often frustrating, upsetting and isolating. Imagine never knowing if you're going to have a seizure or not, but carrying on because, what else can you do? Even the 52% of people with epilepsy who are seizure free must still take medication which can have side effects. Many people with epilepsy face discrimination in the workplace and at home which of course impacts their mental health negatively.
I was delighted to see the video go live. At the time of writing, we've had over 248,000 views of the video - which is brilliant. It was such fun filming and it was great to be able to help educate viewers. Hopefully this media coverage will continue help to reduce the irrational fear of epilepsy and consequently, the discrimination and awkwardness that some people with the condition still face.
HuffPost UK Lifestyle has launched EveryBody, a new section calling for better equality and inclusivity for people living with disability and invisible illness. The aim is to empower those whose voices are not always heard and redefine attitudes to identity, lifestyle and ability in 2017. We'll be covering all manner of lifestyle topics - from health and fitness to dating, sex and relationships.
We'd love to hear your stories. To blog for the section, please email firstname.lastname@example.org with the subject line 'EveryBody'. To flag any issues that are close to your heart, please email email@example.com, again with the subject line 'EveryBody'.
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