Travelling with a Hidden Disability – Epilepsy

Travelling with a hidden disability: epilepsy. National Epilepsy Awareness week in the UK just came to a close, and it made me think. Not many people seem to think of epilepsy when they think of hidden disabilities, but it is one. When people think of epilepsy, they often think of people having tonic-clonic seizures (some still call them grand mal) where the person is unconscious and jerking, like what I have, but it’s more than that. Sometimes it’s someone looking like they’re daydreaming, just suddenly pausing mid-sentence or action and then returning to whatever they were saying or doing as if nothing happened. Other times, someone can be fully awake and aware but are experiencing something called an “aura”, which can be difficult to explain. Do all of these make travel risky? For some, it can and they’re told not to travel. For others, like myself, it’s perfectly fine so long as they take the right precautions.

Travelling With A Hidden Disability – Epilepsy Edition

I’ve been on a self-exploration journey this year, despite having had this condition for 16, nearly 17 years. And a big part of that has involved one of my biggest loves, travelling. Over 65 million people globally will have epilepsy at any one time, so I know I’m far from the only person with epilepsy who loves seeing other parts of the world and experiencing other cultures. I’ve given advice to other people, both those who’ve lived most of their lives with epilepsy and those with a more recent diagnosis who are scared out of their minds. It feels empowering to no longer be gatekeeping myself and to be able to help provide support and guidance for others like me. To look at me, to hear my stories of travelling to 36 countries, hearing that I’ve done months long solo trips, you probably wouldn’t think I had a condition where I could die suddenly. That’s one of the parts it feels more awkward. I sometimes don’t feel like I should qualify for assistance or any discounts for people with a disability. I fear people will judge me or don’t believe me because I don’t look disabled. But it’s important to remember that any experiences with epilepsy are still valid.

If you’re new to epilepsy, new to travelling with epilepsy, know and love someone who has epilepsy, or are just curious, these are the sorts of things I’ve learned from experience, and usually what I tell people (even though some of them might seem like common sense).

Things I’ve Learned From Travelling With Epilepsy

• Learn your triggers if you don’t know them already. That way you can do your best to avoid them. Know yourself and what you need to make sure that you can enjoy yourself while remaining safe.
• Talk to your doctor. For most people, it won’t be an issue, but it can’t hurt. It might be good to get medical clearance just in case.
• BUY TRAVEL INSURANCE AND DECLARE YOUR EPILEPSY. Yes it can increase the cost, but if something happens and you don’t declare it, insurance companies would try to find a way to link it to you having a known condition you didn’t declare.
• Make sure you have more than enough of whatever medication you take in the chance there are delays getting home. Anti-epileptic drugs are not ones to miss. Also research your medication, some of the common ones are controlled substances in some countries, and you’ll definitely need to have a letter from your doctor. Additionally, many countries may not have the same level of care or treatment for epilepsy you may be used to depending on where you are from, so you may not be able to access certain medications or treatment if you were to have a seizure that required it.
• If flying contact your airline – you also qualify for special assistance. Most likely, it’ll come in the form of priority/pre-boarding status which is very helpful if you find boarding stressful, and stress/anxiety can be a trigger for you, or if it’s a red-eye and lack of sleep is a trigger. Some others might give you free seat choice or free security fast pass.
• Also if flying, stay hydrated. This goes for everyone really, but dehydration can be implicated in a lot of seizure activity. Especially avoid alcohol (it’s good to limit that anyway).
• Going back to the medications, if you’re changing time zones, set an alarm for when you would take them back home to help you keep to your schedule. Once you’re at your destination, slowly adjust your schedule to be at a “normal” time so you aren’t waking up to take your meds at 3am. Even better, if you’re able to, start adjusting your schedule ahead of time so it’s a quicker transition. Sometimes, you will just need to jump in and change it more quickly (like if it’s a shorter trip), in which case, just take it very easy at the start of the trip, as it might make you feel a bit “off”.
• Research activities and laws ahead of time. As much as it can suck, some things are just not going to be doable. It can be more obvious things like diving or indoor rides at theme parks or climbing Mt. Everest, but different companies might set their own rules depending on what the activity is. Knowing what you’ll be able to do will help avoid disappointment if you get told you can’t do something.
• Also, even if you’re legally considered safe to drive where you live, some countries are very strict, so look up the laws about driving/renting a car. In many US states, it’s 6 months seizure-free with a doctor clearance. In the UK, it’s one year. Other countries, like Japan for example, you won’t be legally able to drive even if you’ve only had one seizure in your life.
• If you’re doing an organised tour/bus tour make sure any tour operators know, and if you’re comfortable with it, it might be helpful to tell other people on the tour and tell them what to do if needed.
• If you feel comfortable, a lot of places recognise the sunflower lanyard as a symbol of a hidden disability, so invest in one of those if you think it would help you feel better!

Most importantly, be safe! But! Don’t let this BS condition ruin your vibe or think that you don’t qualify for assistance! You can still enjoy travelling and seeing the world. As I said, I’ve been to 36 countries, across 5 continents, and I have no intention of stopping… just doing so safely and in as much of an epilepsy-friendly way as possible!

Xoxo Steph