Spoiler alert: adventures tend to involve risk. When preparing to climb rocks, paddle down whitewater or bike on rough terrain, you sign a waiver (either literally or figuratively) claiming full responsibility for your own life and death. 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 ‒ but that doesn’t mean that we should be more afraid, or that others should be afraid of including us.
"I have to restrain myself from throwing the Equality Act 2010 their way if there is a hint I shouldn’t be doing something"
The same goes for everyone who lives an adventurous lifestyle, epilepsy or not. But if you are looking to start doing some activities for the first time, we’ve put together a few tips to help you become an adventurer.
Tell People You Have Epilepsy
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. Inform flight attendants when you fly, tell group leaders and travel companions what to do in a seizure-situation, and consider wearing something to show you have epilepsy. I have a luggage tag on my bag, but others have slightly more fashionable jewellery.
Find a Buddy
Whether you have regular seizures, want someone to share the journey with or you just get bored of telling people again and again about your epilepsy, you can’t beat an adventure buddy. I know from experience that this can be difficult to get right. To find someone you get along with who wants to do the same activities, has the same budget, knows how to handle a seizure and is available on the same schedule? Not always possible. But the internet is great (sometimes) and does make it easier, with apps such as Meetup and Climb Buddy connecting people. And you can always contact us to see what we’re up to!
"Inform flight attendants when you fly. Tell group leaders and travel companions what to do in a seizure-situation"
Take Enough Medication…
Speak to your doctor about taking enough with you to last the length of your trip, plus some extra to allow for delays. The precious space my medicine takes up in my backpack is a source of irritation, but what you gonna do?
… Take Your Medication at a Regular Time…
It is very easy to lose track of timings when you’re having such a good time, and this is especially true if you are in a different timezone. Make sure you still take any medication at the same time you would at home. Even if you start with microadventures that don’t last long, be sure to check if a dose falls during your adventure time, and allow for some leeway in case the trip lasts longer than expected.
…. and Check the Rules for Your Medication
Some anticonvulsant medication is controlled by law, and this can be different around the world. You may need a note from your doctor to say you need your medication, or even a personal license from the government of the country you travel to.
"The precious space my medicine takes up in my backpack is a source of irritation, but what you gonna do?"
Have a Support System
Very few people adventure without help. Even those who are doing immense solo treks will have a support system of some sort at base-camp. And unless you plan to do a Christopher McCandless, if you are going it alone, it is a good idea to have a regular check-in schedule. Let people know you are safe and where you are. If you’re doing a day-hike, let the place you are staying at know where you’re going and when you plan to return. If you are heading somewhere remote without mobile phone reception or wifi, consider a specialist tracker people can follow, or a satellite phone.
Get the Right Insurance
I’m not going to lie: this sucks. Even if you are seizure-free, the price of travel insurance increases, and even when you pay more it is still not guaranteed to cover seizures. Seriously. You also need to check the insurance you get covers you for all activities (things like hiking at altitude or whitewater rafting are usually not included in basic cover). If you are doing an organised activity, be sure to ask about the company’s insurance policy, too. It’s all a pain, but is it worth multiplying the risk by not doing it properly?
If you are going to be doing an activity regularly, you could research whether there is an official organisation for that sport and consider becoming a member. The British Mountaineering Council in the UK, for example, offers coverage for all aspects of mountaineering to members.
"Very few people adventure without help. Even those who are doing immense solo treks will have a support system of some sort at base-camp"
Know Your Limits
And think about adapting activities or taking extra precautions if needed. When I walked the Camino, some of my family thought that I should walk with someone all the time in case I did have a seizure. But I quickly learned that it was far safer for me to go at my own pace than it was to push myself to keep up with others (not to mention, I often wanted to walk solo). This is true for anyone doing any sport and there are multiple consequences of pushing yourself too far besides triggering the big-S.
This is even more important when you are doing an activity with others. Never do something that could endanger others. This comes back to full disclosure, and everyone involved needs to know the likelihood, symptoms and consequences of your particular epilepsy. There is nothing wrong with needing to step back or have allowances made for you.
"There are ways to find a balance between taking risks and staying safe. So head out there and try something you never thought you’d do"
Having epilepsy might mean you cannot be as complacent and off-grid as you would like, but assessing all the risks is part of planning an adventure anyway. You are in charge of yourself, and you need to decide if you can do something. There are ways to find a balance between taking risks and staying safe. So head out there and try something you never thought you’d do.
Don’t forget to use #myepilepsyadventure to tell us about your own experiences.