THE BLOG

Yes, I Take Full Responsibility For This Disease I Can't Control...

03/10/2017 10:44 BST | Updated 03/10/2017 10:44 BST

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Photo author's own

Spoiler alert: adventures tend to involve risk. When preparing to climb rocks, paddle down white water or bike on rough terrain, you often sign a waiver claiming full responsibility for your own life and death. Whilst this puts dramatic outcomes in mind, (I can't sue if I die? I was looking forward to haunting you in court...) the real reason for such forms is mostly to stop complaints over skin bruising or nails breaking.

For most people who indulge in such activities, this 'risk factor' is signed away without a second thought (indeed, it's often part of the draw). For those of us with epilepsy, we have to consider the heightened risk before signing - but that doesn't mean that you should be afraid of including us.

As somebody whose seizures are currently controlled by medication, when faced with that box that says 'Do you consider yourself to have a disability?' I mostly tick 'No'. After all, I have not required special arrangements to sit at a desk, speak to customers, walk down the street or eat lunch. In other words it doesn't affect my 'daily life' as is often used as a measure of disability on forms. But now that I am again starting to do more activities that go beyond daily life and into the realm of 'adventurous', I'm finding that box is not so easily ignored.

If I were to have a breakthrough seizure right now (*frantically touches wood*) aside from the usual risks involved with having a burst of electrical activity in my brain, I would be as safe as I can be. My boyfriend is here, I'm on a nice soft chair and there is nothing hot or jagged nearby. But put me up a mountain or out on a lake and there is a heightened amount of risk involved.

Since completing my walk across Spain this summer, I've decided to continue with some much smaller adventures that happen to be much more organised. And suddenly, I'm having to reassure a lot of people that it's OK for me to do things. Organisers panic that I want them to take responsibility for me. I'm restraining myself from throwing the Equality Act 2010 their way. As somebody who is a few years seizure-free, besides scuba-diving and piloting a plane, there are very few things that I am banned from doing. (I do have a certain level of sadness that I could never become an fighter pilot.) In all other situations, I have to decide for myself if it is safe for me. I think the medical term for this is 'not being an idiot'.

It has crossed my mind many times that it would be much easier to just not tell people I have epilepsy. But there is always that chance of a seizure, and the risk of something going wrong - or someone doing something wrong - is reduced if we all talk about epilepsy a little bit more and encourage people with epilepsy to do more. If I've decided I can take the risk, you can too.

I'm not expecting you to do a risk assessment on a disease you don't understand. I take full responsibility for anything that happens to me due to a seizure. What I don't take responsibility for is your fear and misgivings about my epilepsy. Those are on you.

To keep up with my adventures, please follow me on Instagram.

If you'd like to find out more about epilepsy, and the risks it presents, head to Epilepsy Action.