A few hundred years ago, people would have thought I was touched by God or the Devil. I probably would have been burnt as a witch. Luckily for me, I was born in this century so I was diagnosed with epilepsy instead.
We might not call it witchcraft any more, but we all still struggle to understand and control the condition. A lot of the time, it is even a mystery to doctors and researchers, particularly when people suddenly develop seizures. I had my first tonic-clonic (those full-blown ones the media always portrays) about seven years ago, when I was 21. It was my last year of university. As a young woman with no history, among the many questions the doctors asked were the obligatory “have you been drinking?” and “have you been doing drugs?” (The answer was no. In rather millennial fashion, I was about to cook risotto for my friends.) I do understand why the doctors have to ask, but it felt so accusatory at the time.
The doctors put it down to a one-off. A year later, it was a two-off. I was told to put it from my mind, but nearly four years after that first time, my seizures became so frequent I was finally diagnosed. It was the best thing that could happen, and now that my medication controls my seizures, I can live an independent life. So, seven years after my first seizure, three years after an epilepsy diagnosis, two years since my last seizure, months of plans and weeks of walking and I have just completed a solo hike along the Camino de Santiago in Spain. The final count? I’ve walked over 787km, or 490miles,by myself
My epilepsy changed the way I went about it. I could not be as complacent and off-grid as I would have liked. I had the extra worry of getting enough medication to last the full length of my trip. Even without the seizures, the price of travel insurance was increased. I have to inform flight attendants whenever I get on a plane by myself and I had a little tag on my bag shouting “I have epilepsy” (the Spanish is tengo epilepsia) to anyone who is observant enough. I was told it made me look like Paddington Bear – “Please look after this Fran.”
As I was walking along, I told as many people as I could that I had it. I spoke about epilepsy with so many people from different countries – Spain, Portugal, US, UK, Germany, Lithuania, Austria, Peru, Argentina, Australia, New Zealand, Ireland, Latvia to name a few – most of whom knew little about the disease (am I diseased?). Everyone had questions, the most common one being, “but what do I do if you have a seizure?!”. Fear for me (of me?) was the expression I saw in most people – with a few impressed faces thrown in.
And so many people asked me if I was scared, said that I was brave to walk alone. It just echoed my family’s extra worry for me ‘with my epilepsy’, as if the walk might break me again when I was fixed. But the further I walked and the more I talked, the stronger I became and the more people began to see what a person with epilepsy can do. There are 52% of us in the UK who are living seizure free. For those that aren’t, your panic is the last thing they need.
But in fairness, however much I explain it to other people, my epilepsy still confuses me. And yes, it sometimes worries me that my seizures could return at any time. But that is the case whether I am at home or abroad – so why not walk across Spain in the meantime?
There’s still time to sponsor me and donate to Epilepsy Action to help others with epilepsy.
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.