Over 600,000 people in the UK are affected by epilepsy, a neurological condition in which sudden bursts of intense electrical activity lead to seizures. These seizures vary in intensity but can have a detrimental impact on someone's education, career and relationships, as well as being potentially dangerous on a daily basis.
Symptoms of the condition include the body jerking or shaking (a "fit"), a loss of awareness or unusual sensations, such as "a general strange feeling that's hard to describe", the NHS notes. Yet despite being one of the most common serious neurological conditions in the world, the reality of epileptic seizures remains shrouded in mystery. But one young woman wants to open up the dialogue around how they impact people's daily lives. Sophie Wilson-Smith, 24, a British master's student and model, recently uploaded a live video of herself having a seizure to Instagram to highlight what an epileptic seizure really looks like.
In the candid clip, Wilson-Smith, who studies veterinary epidemiology and public health at London School of Hygiene and Tropical Medicine and the Royal Veterinary College, is conscious and aware of what's going on, but disoriented. Tearfully, she says her seizures typically last between a few seconds and a couple of minutes, and sometimes involve a "pins and needles"-like sensation in her arm.
By sharing her experience on Instagram Stories, Wilson-Smith wanted to highlight the fact that epileptic seizures can happen to anyone (even to those without epilepsy, as a one-off), and to destigmatise the condition, which is "more common than people think". "I felt so alone when I started having episodes. I didn’t even think I had epilepsy, I didn’t know focal seizures existed," Wilson-Smith told Refinery29. "I had to do my research and really push to be heard by doctors."
Wilson-Smith was officially diagnosed with the condition this summer, after an onslaught of medical tests following an out-of-the-blue seizure while at work in April 2017. "I wanted to show people that invisible illnesses are just as important as other visible conditions, and that they can also be incredibly mentally debilitating, and cause a lot of emotional distress, anxiety and depression. Hopefully, by putting myself out there, other people unsure of what’s happening to them will try and push to reach out to others and professionals for help when they need it."
Part of the reason why epilepsy remains shrouded in mystery is because seizures are so varied and people tend only to talk about the most serious ones, Wilson-Smith believes. "It’s easy to make assumptions that epileptic seizures are typically tonic-clonic episodes, where someone may fall on the floor," she said, adding that there's a long way to go before the stigma falls away from the condition completely.
"Often people are scared to talk about it as they don’t want to be portrayed as having a disability, especially if they’ve been newly diagnosed as an adult. There are so many, all with varying symptoms, and sometimes you wouldn’t even know someone was having a seizure, unless they had time to tell you. Many symptoms of epilepsy can often look like other conditions. I think it’s important to promote education around the subject."
Since being properly diagnosed and receiving the right medication a couple of months ago, Wilson-Smith's life has improved drastically and she's been seizure-free. "It used to cause me a lot of stress and anxiety about living life normally. I used to panic about not getting enough sleep, enjoying even drinking socially with my friends, or staying up late – this was tough as an undergrad! I couldn’t enjoy myself anymore."
She quit her retail job and would dread getting her period, which could trigger bad episodes, so she would hide away and avoid going out as much. "I still worry about having [seizures] in public in case people are judgmental towards me, but I realise this is largely my own insecurity. I’m starting to learn to accept that this is me, and if other people can’t, it doesn’t matter."
A spokesperson for Epilepsy Action said the charity was "hugely grateful to Sophie for being so open about her epilepsy and helping to raise awareness," and that discussions of the condition can be hugely beneficial. "Historically, epilepsy has been somewhat hidden, stigmatising people and reinforcing stereotypes. For this reason, positive representations of epilepsy are a huge boost to people living with the condition and can help them feel less alone." Importantly, showing what happens during a real seizure can also help to inform the public about things like first aid and seizure triggers.
For support and more information about epilepsy, visit the Epilepsy Action website or call its helpline on 0808 800 5050.