This post was contributed by Marika of Clumsy Girl Travels!
Traveling with a disability is no easy feat—wheelchairs can be damaged, folks are sometimes left waiting for airport staff to help them, and things aren’t always accessible.
And if you’re traveling with a hidden disability — one that is invisible but presents a whole throng of issues, it can make things very difficult.
Marika was born with a rare degenerative neurological condition called Episodic Ataxia Type 2. Ataxia causes my muscles to move involuntarily making it difficult to do everyday tasks such as walking, writing, or even riding a bike.
Whether you have arthritis, hearing difficulties, MS, or something else — Marika has put together her tips for traveling with an invisible disability.
Here are her tips for traveling with a hidden disability!
What is Your Hidden Disability?
There are many different types of Ataxias, some being more severe than others.
In some cases, Ataxic symptoms can worsen over time which means there is a possibility I could end up needing to use a mobility aid in the future. I own a cane, but I luckily haven’t had to use it much.
The most severe symptom I have are my migraines which are incredibly painful and can last for 24 hours to 2 days or longer. Ataxic migraines are sometimes compared to seizures (I was actually misdiagnosed with epilepsy).
When one hits, they can make me drowsy and unresponsive which can make traveling dangerous. Luckily, I take medication that has controlled my migraines for the most part, but I still do get them now and again.
Can You Travel Solo with Ataxia?
I travel most of the time by myself and absolutely love it, but there was a time when I thought I wouldn’t be able to go solo.
My symptoms used to be a lot worse. Throughout my childhood, I was misdiagnosed with Epilepsy and Cerebral Palsy. It wasn’t until I was 19 that I actually got my correct and final diagnosis of Ataxia.
In my early 20s, when I finally started taking the correct medications, my life completely changed
For the most part, my migraines were gone and my balance seemed to get slightly better. By the age of 22, I booked my first solo trip and I’ve never looked back.
My Experiences Traveling with a Disability
What Was Your First Solo Trip Abroad Like?
My very first solo trip was to Ireland. I picked a place that was easy to navigate and where they spoke English.
I chose to do a 9-day group tour, so if I had any emergencies I wouldn’t be completely alone. Thinking back, that trip was probably one of the most terrifying things I had ever done at that time.
Thankfully, everything on that trip went smoothly and I realized afterward that having a disability doesn’t need to hold me back. I am just as capable of traveling the world as anyone.
I may need a bit more help along the way, and if I have learned anything from my travels, it’s that people are absolutely willing and glad to help.
Have You Had Any Scary Experiences?
I have had quite a few. There was one time in particular when I was visiting Cartagena, Colombia. I was about to do a food tour when a super painful migraine hit. It was so bad that I could hardly walk.
Thank goodness, I was close to where I was staying and the tour guide said I could join the tour another day, so I rushed back to my bed and stayed there for the next 48 hours (it lasted that long!).
Heat is a major migraine trigger for me and I went to Colombia in April when it is very hot there. Luckily, I packed a portable fan which saved me during my migraine. I was very fortunate to be so close to my hostel.
What Do You Do When Your Symptoms Get Really Bad?
The only thing I can do is try to get back to my bed as soon as possible.
I can’t always tell when I am going to get a migraine, so if I am far from my hotel room I would just have to deal with it and hope I find my way back as quickly as possible.
It’s good to always be prepared for an emergency and have a way to pay for a taxi back to your hotel in case something comes up.
How Have People Perceived Your Disability in Other Countries?
There are a lot of people who won’t understand that a disability can be invisible. I have struggled a lot with this perception.
One time in London as I was exiting at a really crowded tube stop, I accidentally bumped into someone and that person pushed me so hard, that I fell. Sometimes, I get comments from people who think I’m drunk because of my balance issues.
They tell me to stop drinking so much. I try explaining that I have a disability but some people still don’t believe me.
These are definitely some of the hardest and disheartening parts of traveling, especially with an invisible disability.
Those comments used to bother me a lot more when I was younger, but now that I’m older and hopefully more mature, I can take them in stride and move on. I have gotten used to it, but to be honest, they aren’t something I should have to get used to.
Unfortunately, this is not a perfect world so they’re a reality when traveling with a hidden disability.
Planning Your Trip
It’s important to note that not every destination will be accessible. You will have to know what your needs are before picking a destination.
With my balance, I can’t do strenuous hikes or treks, so a place known for hiking might not be an ideal place for me to travel.
Everyone’s needs will be different, so just do your research and make sure you pick a destination you’ll be able to enjoy.
Transportation is a big deciding factor when it comes to where I travel. Driving is not an option for me, so I am required to travel to places that have a public transportation system or rideshare apps.
Another option is doing a group tour.
That way you don’t have to worry about transportation and your entire trip is planned for you which can be nice especially if it is your first time traveling abroad.
I have done many group tours and have loved every single one.
Tips for Traveling with a Hidden Disability
Don’t Be Afraid to Pre-Board
When I was 12, I boarded a flight that almost resulted in me falling into a flight attendant who was carrying a tray of drinks.
Since then, I pre-board every flight. Pre-boarding is not limited to those with visible disabilities and young children. If you need more time to board a flight, you have every right to pre-board and absolutely should.
Get a Sunflower Lanyard
The sunflower lanyard was designed by an Accessibility team at Gatwick Airport for passengers with invisible disabilities.
The lanyard shows employees that the person wearing it may need extra help and support when navigating the airport.
It allows those with disabilities to feel better about traveling independently. Currently, the sunflower lanyard is supported at over 100 airports worldwide.
Be Open About Your Struggles
Personally, being open about my disability has never been an easy thing for me to do, but over time I have learned how important it is to let people know.
One time in Greece, I was taking a group boat tour to a beach. The boat we were on had a cafeteria and on the way back, I went to get food.
I filled my tray up and headed back to my table with a full tray, but on the way, I lost my balance and the tray crashed to the floor. You can imagine what a mess it was and I was mortified.
Thinking back, I should have just told the cashier about my disability and she could have had someone carry my tray to the table and that disaster could have been avoided.
A couple of months later I was visiting Harry Potter World in Orlando and was in the same situation. Instead of taking my tray to my table myself, I asked someone if they could help me and they did.
I know a lot of times it can be difficult to open up about our limitations because we don’t want to feel like a burden to those around us, but trust me when I say most people will be understanding and they will WANT to help you.
Consider Slow Travel
I personally get so stressed when I have to move from country to country quickly and prefer to spend more time in one place than see multiple places.
Ataxia also causes me to get very fatigued, so I usually have about half a day to explore before I get too tired.
The main perk of slow travel is that you don’t have to rush and see everything in a couple of days.
It allows more flexibility, so you aren’t as stressed getting from point A to point B and it can be cheaper!
Stress is another trigger for my migraines, so the less I stress, the better, and slow travel makes traveling a lot less stressful.
Traveling with a hidden disability has its challenges, to say the least, but that doesn’t mean it has to be the barrier that prevents you from seeing the world.
As long as you take the proper precautions and do your research, you’ll have a great time.