Travelling with epilepsy wasn’t easy at first, or at least without my family.
Some context is needed. I am fortunate and my epilepsy is largely controlled by medication. There have been times when this hasn’t necessarily been the case, but my last seizure was approximately 18 months ago (touch wood) and I am otherwise fit and healthy, lifestyle choices aside.
I’ve travelled to a number of countries over the years, doing many things I never thought I would have the opportunity to do when I was first diagnosed . I have travelled with friends, on my own, in small tours groups and with family. I was going to include a section about travelling solo with epilepsy, but I think that is a subject matter on it’s own. I will edit this blog post at a later point in time to include a link to a separate blog post.
I realise not everybody is this fortunate. But this is my experience, and if somebody reading it can take anything positive away then it was worth my time writing the blog post.
Travelling with epilepsy can be managed by three simple concepts:-
- Being responsible (or as close to being responsible as you can).
- Being sensible and using common sense.
- Finding the confidence to go out there and do the things you have always wanted to do.
Knowing what you definitely cannot do is pretty easy with a little common sense, or at least is should be. I might not be the best person to use as a shining example.
Scuba diving is a no. Free solo climbing should probably be avoided too. It can be a kick in the teeth if you are unable to do something you want to, but unfortunately that’s the way it is. It is not a good idea to lie or plead ignorance either; if your epilepsy means you are unable to drive it is wise to avoid any activities that require a driving licence, regardless of whether you are asked to present one. I know from experience, driving a snowmobile when I knew I shouldn’t – fortunately it was incident free.
I don’t think too much needs to be said other than avoiding anything that is most likely going to cause you serious harm or put yourself or others at a heightened risk.
Being aware of what you probably shouldn’t do is a little more ‘complicated’ and is about finding a balance between feeling comfortable, both in terms of safety and your own confidence, and maintaining a degree of responsibility.
There are a thousand and one sports and activities that carry risk, regardless of the medical conditions of participants. The risk and potential consequences vary dramatically, playing squash is generally considered safer than white water rafting down the Colorado. Managing epilepsy in our daily lives is in itself an exercise in risk management, whether we recognise this or not. Simple things, for example making a conscious effort to stand back from the platform edge at a train station.
‘Being responsible’ in the context of travel is combing these, and it is probably best explained using a personal example:-
I love the sea. I was travelling in Belize with a friend and we had arranged a number of snorkeling day trips to the Barrier Reef. On one particular trip, the captain of our boat asked if we wanted to go night snorkeling. Night snorkeling, this sounded amazing. However snorkeling at night threw in a bucket load of extra factors to consider, I listened to my better judgement and decided not to go with my friend. My friend would later tell me just how amazing it was, but I still felt I had made the right decision.
Should I snorkel at all with epilepsy?
Some people would say probably not, but I have considered and try to mitigate the risks associated with snorkeling. I would never snorkel alone, I nearly always snorkel with friends and where possible let the captain or guide know that I have epilepsy.
Snorkeling at night was very different. To cast back my mind, some of my initial thoughts were:-
- If I have a seizure, it is far less likely anybody will see me. The guides work their hardest, but I am not the only person in the water.
- If after having a seizure I am disorientated, it will be far harder trying to find the boat in the dark. Fortunately I have never had a seizure in the sea, so I cannot speak from experience here, but I imagine it would be harder in the dark.
Simply put, I neither felt confident nor would I have felt safe snorkeling at night. I actually felt I was being a responsible adult, which is not something I can say has always been the case.
Photo: Me snorkeling in the Belize Barrier Reef
Making people aware
This is a short but important piece of advice.
I am going to sound like my own mother. I don’t always listen to this advice, but I must stress the importance of letting the appropriate people know that you have epilepsy. By this, I mean if you are doing a tandem skydive, it is probably a good idea to let your instructor know.
From experience there is nothing I have not been able to do by informing a tour operator, tour guide or similar about my epilepsy. The reason for doing this is not only for your safety but to enable extra considerations to be taken. In the example of the sky dive, the consideration was that I went with the most experienced instructor.
It is also sensible to carry something on you identifying you have epilepsy. I think the Medic Alert credit card sized cards are very good. It doesn’t hurt carrying a written translation of “I have epilepsy” in the spoken language of a country, you are visiting but some may feel this is overkill.
Travelling with medication
This has always been a somewhat irrational worry for me.
It goes without saying that every country has different laws around prescription medical and drugs. I must stress to anybody travelling with medication to check as much travel advice as you possibly can. Make use of forums, government websites and embassies. A quick call can usually answer what you need to know.
I always take my medication in the appropriate boxes with the labels on, along with a letter from my GP. I take enough medication for the duration of the trip plus a few days, in case I am stuck for any reasons.
I have travelled to places such as Kenya, Tanzania, Singapore, Thailand and Ecuador and never had any issues. Iceland and Svalbard are the only places I have actually been questioned around my medication, I still think this is because the security staff were so bored.
Would I visit Dubai or use the UAE as a transit airport? Probably not, but I see no reason why this should be an issue.
Do I need to saying anything? Make sure you get it, make sure you declare your epilepsy and make sure you get cover for the activities you plan to do. The premium will sting, but it’s better to be safe than sorry (I use Marks & Spencer).
Keeping in touch
My parents worry and ask me to keep in touch. This can be annoying. For example they ask for a phone call when I have landed and arrived in my hotel. Do I want to? Not always, but I do it.
This is of course individual to each and every person, so I can only really rely on my own experiences to give my advice. For me, it was unknowingly about baby-steps.
I was diagnosed with epilepsy I was 16. I was due to go away on a ‘lads holiday’ the following year, but was unable to go. My epilepsy took a few years to control and as a result I missed out on two more ‘lads holidays’.
However I was very fortunate when I was younger and my parents took me and my sister to the USA every year, something we carried on doing until I was 23. We never partook in extreme activities, but things like trail back horse-riding, Grade 2-3 white water rafting and snorkeling. Travelling with my parents made me realise I could still do things I wanted, even with my epilepsy not fully controlled at the time. I have later gone on to do sky diving, bungee jumping and snowmobiling (in hindsight this wasn’t one of my more sensible ideas) among many other things.
I hope my parents are not reading this as there are somethings they are better of not knowing about.
I do largely credit the confidence I have to my parents, encouraging me to do things I otherwise may not have done. However travelling with family is a bit like being bubbled wrapped, you are already with the people you need the most should anything go wrong.
This is where friends come in. They say friends are the family you choose, cliche I know. My first time travelling for a significant period of time was with one of my best friends at the time, the type of person I knew would look after me were something to happen. Somebody who had seen me have a seizure and would know what to do if I had another one. Somebody I was as comfortable with as you can be with another person, it wasn’t too dissimilar from travelling with family.
Photo: Travelling with the above mention friend in 2006
I done more than I imagined I could and would do while travelling with my friend. It just built on the confidence I had gained while travelling with my family.
I now felt I was ready to take on the world alone, but I started slow. I will link to a separate blog post to solo-travel with epilepsy, but it took a bit to do it. That may sound silly to some, but going to a foreign land, nobody with me and a complete unfamiliarity of health care systems.
To get to where I am now, it meant first travelling with family followed by my best friend. I have been lucky I had the opportunity to do this, not everybody does and of course I can only speak for me. If anybody reading this has any questions, either post in the comments or contact me and I will respond when I am able to.
Phew, this blog post went on a bit too long.