I love travelling. I was lucky growing up to go on amazing holidays with my family, and I started travelling with friends in undergrad to discover new places, new cultures, and new food. When I was diagnosed with lupus I had to forget travel plans for a while, and one of my biggest concerns (except for life expectancy etc) was would it prevent me from exploring the world? Visiting countries such as India, going on adventures in Iceland, or being able to be covered by insurance for the US and Canada?
The idea of not being able to travel is a horrible thought, but thankfully it is only that – a thought. I haven’t ventured out of Europe yet since my diagnosis, but I have happily moved abroad twice, visited 4 new countries in 2017, plus various city breaks with very minor consequences (e.g. I nap a lot once I return).
So, how to travel with lupus? Well…
What to Bring
Think About Insurance
I haven’t bought insurance for ventures around Europe. As an EU citizen, chronic illness is covered by the EHIC card, even when living abroad. It is also free. However, if you are not an EU citizen, or travelling outside of Europe, or you feel like you would relax more with insurance, there is no harm in researching for the best deal.
Extra Medication and a Doctor’s Letter
And always take in your hand luggage. You never know when something might get lost/stolen, or taken from you, and you’ll need these things to cover your arse. I’ve begun to relax about this, truth be told, because I’ve ever been questioned at security about my medication. But imagine how freaked out I will be if one time security decided to question why I was a walking pharmacy… It takes up a lot of space but it’s better safe than sorry.
Every lupie knows how bad the sun can be, even in the UK on cloudy days I use SPF 30 minimum. If you’re flying hand luggage only it can be worth buying the sun cream at duty free or your destination so you don’t have to skimp on protection.
List of your Medication
I always carry a list behind my ID, just in case an emergency occurs so the doctors will know what medication and dosages I am on. iPhones also have the medical ID app, which can be accessed on your lock screen.
Emergency contacts such as family members, or your travel buddies, but also the country’s emergency number.
Not just the vital stuff that keeps you alive, but things such as paracetamol because you never know. Be a first aid kit, they’re always handy.
Things such as pillows etc to help with long journeys, or to help you relax after a long day.
It can be tempting to only pack what looks good and is fashionable, but if it leaves you in pain, it’s no good. I sometimes opt for my huge but comfy trainers rather than my converse, at times I can hardly walk for joint pain and swelling. Pictures still looked fine. Long dresses and skirts look great on anyone and are good for protecting you in the sun but keep you cool. Not to mention sun hats might feel a little ridiculous if they’re huge, but you always receive compliments.
What to Do
Everyone should always drink lots of water, but if you’re spending all day busy, and in a warm country, it is even more important!
Stay Sun Safe
Getting a tan is great (especially when you’re naturally pale like me), but it’s not worth it if its going to induce a flare. I’ve risked sunbathing but I’ve had to pay for it after. Not with a flare thank god, but I certainly don’t feel great after, and it can take a few days to recover from one day at the beach.
Let your Travel Buddies Know
Sometimes it can be hard to explain the seriousness of living with lupus without seeming over dramatic. But it is a serious disease (as doctors have patiently told me when I’m trying to pretend everything is normal and that I can do what I want), so people you’re spending 24/7 with really ought to know, so they understand your limitations etc. And people are way more understanding then you may assume, my travel buddies make sure that I’m in the shade, or refuse to go sunbathing if I can’t. You become so grateful for them.
Let your Family/Guardians know
Whoever back home likes to keep an eye on you, make sure that they know your travel plans and keep them updated.
Rest When Needed
I always try to save my energy for important/the most fun events, and the same applies when travelling. Use your spoons wisely.
Avoid Peak Sun Hours
This is usually lunch time, so why not grab a place inside or in the shade and eat some delicious local cuisine?
Don’t Be Afraid to do Other Things than your Friends
I explain to people I’m with that they can feel free to explore/sunbathe without me, if I’d be better staying inside or resting. It’s really lovely when friends insist on staying with me, but sometimes you may not be up for what everyone else wants to do and that’s okay.
Pay Attention to your Body
Whilst my travels so far since my diagnosis have been largely undramatic, it is not to say I haven’t been affected. When I returned home from Spain, I ended up needing to go to Ambulatory care at my local hospital, because pleurisy pains had emerged. The doctor mentioned this could happen to anyone during long haul flights, however I guess with lupus even a two hour flight could trigger it. So, always pay attention to your body, but when travelling make sure you don’t push yourself to your limits and end up regretting it. Know when to rest, and when to seek help.