Life abroad with ataxia, a hidden disability

Living in a new country has broadened my horizons. I’ve been lucky enough to meet people from all corners of the globe. Recently I was in touch with travel blogger Marika. Marika is a travel blogger with a difference. She suffers from ataxia, a hidden disability. Her condition is so tough that some might be put off her travelling, and yet Marika made a career out of it.

Here she shares more about life on the go with ataxia…

travel blogging with ataxia

About Marika, about ataxia

My name is Marika, and I run a blog called Clumsy Girl Travels, where I share unique and unconventional travel experiences around the world with a side of humor.

I also share insight into what it’s like traveling with a degenerative neurological condition called ataxia. I was misdiagnosed with epilepsy and cerebral palsy until I was 19.

I have several symptoms which include:

  • Aphasia: the inability to express my thoughts
  • Migraines: when a migraine occurs, I feel nauseous, have severe head pain and need to find a place to sleep right away. When I fall asleep, I can’t be woken up for several hours, and the day after I get one, I still feel woozy.
  • Balance issues: my balance is tough to deal with when I travel. For instance, there are some activities I can’t do, like riding a bike and hiking
  • Tremors: my head shakes when I try to focus on something

Currently, there is no cure for ataxia. I have spent most of my childhood in occupational and physical therapy to help with the progression of my symptoms, and I am currently taking medication that has controlled my migraines, although I still get them occasionally.

Ataxia awareness

Ataxia is pretty rare and there isn’t as much awareness as I would like there to be, but I am working towards it. Now that they have genetic testing they have found hundreds of different types of ataxias.

I have EA2, and 3-5 out of 100,000 people have it. I am lucky my symptoms are pretty mild, but I have no idea if my symptoms will worsen when I am older, and that is something that scares me.

I would love there to be a cure for ataxia in my lifetime, but who knows if there will be. I want to continue spreading the word and educating people on ataxia. I am going to fight for ataxia awareness and a cure.

life with a hidden disability

Cultural awareness

I used to get so frustrated that people would make drunk jokes because I would lose my balance or make fun of me because I couldn’t ride a bike. Now, I laugh with people and make jokes myself. Still, it’s challenging.

My disability is hidden, so people will automatically think I am drunk if I lose my balance.

I have learned that no one will truly know what it’s like to have ataxia unless they have it themselves, and I am okay with that.

Dealing with ataxia on travels

I used to hate asking for help, but over the years, I have learned asking for help isn’t something to be ashamed of, and so if I need it, I will ask for assistance.

For instance, I was in Greece a couple of years ago with my best friend, and we decided one day to take a boat trip to a beach. On the boat ride back from the beach, we were waiting in line to grab some food. I got a tray and filled it up and started walking back to my table, but halfway there, I lost my grip, and everything on my tray spilled and made a loud crashing noise. I was mortified, but I learned from that incident.

Since then, if I am at a place that requires me to carry my food to my table, I always ask for help.

Unfortunately, traveling with ataxia means that I can’t do certain activities. The two main ones are hiking and riding a bike. A few years ago, I went to Colombia and visited this beautiful town known for its intense three-day trek through the jungle to a lost village. Of course, that sounded amazing and something I would have loved to do, but I knew I couldn’t. It wouldn’t be safe for me to do so. I just had to live vicariously through people who did it.

travelling with a hidden disablity

Friends and family support

Surprisingly my family and friends have been really supportive of my travels. My mom, of course, worries, but I was never told I couldn’t do something. I was always pushed to follow my dreams, and that support has made it possible for me to blog and be an advocate for those with disabilities.

I wouldn’t be where I am today without my incredible family and friends.

Marika’s tips for fellow travellers with ataxia

  1. Don’t be ashamed. I have been there, but having a hidden disability is nothing to be ashamed of. People are a lot more understanding than you may think. If you are struggling with something, just know that you will feel a lot better asking for assistance than trying to do it on your own.
  2. Know your limitations. Understand that you won’t be able to do everything, and that is okay. You should know when to say no.
  3. Ask for help if you need it. If you need assistance with something, don’t be afraid to ask. It’s better you ask for help rather than try to do something on your own that could result in you getting hurt.
  4. Make sure you have access to a doctor. Be sure to reach out for proper medical attention, whether it’s for a medication refill or getting hurt. Most places I have visited have English speaking doctors available and it is usually pretty cheap. I have needed to make doctor’s appointments in several different countries and have never had an issue. Ask the receptionist at your hotel or hostel, and they can help you find one and make an appointment.
  5. If you can get a SIM card with data, do it! I am terrible at directions and rely on Google Maps to get around. You can also download Google Maps when you have Wifi for use offline later. If I didn’t have access to Google Maps, I probably wouldn’t be able to travel. No joke!

Marika edits Clumsy Girl Travels, a funny and unconventional travel blog featuring unique experiences from around the world. 

 

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