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Planning a Vacation With a Rare Disease

Summer is here! Time to travel to new places, experience local cuisine, and have some fun in the sun!

Okay, easier said than done for individuals with chronic illnesses. With my rare disease and a few other autoimmune conditions thrown into the mix, relaxing vacations are certainly possible, but they do often require extra planning and thought.

Not all adventures are right for me

With my medical conditions, I've found that certain types of adventures are just not the best choices for me. I have thyroid eye disease, and my eyes are still fairly sensitive even after multiple surgeries to treat the condition.

I recall a pool outing a few summers ago that I knew wouldn't be the best for me. I went, understanding that I could leave early if I needed to. But several hours in the hot sun with minimal shade left my eyes feeling painfully dry. The following year, the same friends invited me to a full day at the beach in 95-degree weather – nope, nope. Sorry, friends, I'll see you for dinner afterwards.

Listening to my gut

I also have celiac disease and must eat a very strict 100 percent gluten-free diet. It's definitely possible to travel anywhere in the world with celiac disease and a suitcase full of safe snacks. But when I have a rare opportunity to take a big trip, I'd like to go somewhere where I can enjoy the local cuisine without too much worry.

I was once invited on a trip that a group of friends and acquaintances had planned, but everything about the situation told me it would be difficult.

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Local cuisine and a language barrier

We'd be going to a small town in a different country. It's often easier to find safe gluten-free food in tourist-centered cities, but that's not where we would be going. Wheat was a prominent ingredient in the local cuisine, and the language barrier would likely make it more difficult for me to effectively communicate my needs.

We would be traveling with a friend who did speak the local language, but on several previous occasions, it was made painfully clear that she didn't understand my medical condition.

In addition, with so many people going on the trip who had their own travel priorities, I, unfortunately, got the sense that my medical needs would not be considered when choosing where the group should eat, and ultimately I would be excluded from many group activities. Honestly, I didn't think that I would enjoy the trip because of those factors. It would be more stressful than relaxing.

Experiencing fun and safe travel

The next year, my husband and I opted to go to Italy, one of the leading countries in the world for celiac disease research. Italy is amazing – Italians with celiac receive a monthly voucher from the government for gluten-free food (which can be purchased in pharmacies), and their local celiac organization certifies hundreds of safe restaurants across the country. I had an incredible time, felt so safe, and can't wait to go back.

5 tips for planning a vacation with a rare disease

Some tips from me when planning your next trip:

  1. If possible, opt for adventures that are easier to navigate with your specific medical conditions
  2. I wish that I could take a break from my autoimmune diseases, but planning trips/activities that require less thought to my conditions are the next best thing. This can help minimize stress and increase relaxation.

  3. Be prepared
  4. Traveling with extra emergency medication and supplies to help navigate symptoms can be very important, especially when traveling to more remote locations that have fewer medical resources.

  5. Pace yourself
  6. Many of us suffer from fatigue, and it's easy to get excited and overly ambitious about seeing all of the sights when going somewhere new. When making a sightseeing schedule, I've learned it's best for me to pick one primary sight each day, then have a list of other nearby sights that I can go to if I'm feeling up for it.

  7. Give yourself permission to be flexible
  8. Let's face it, not everything always goes as planned in the chronic illness community. Fear of missing out and disappointment for not being able to do everything with travel companions is very real. Giving myself permission to do things differently has been helpful.

  9. Communicate
  10. Perhaps you're traveling with a partner or a group. When other people have their own travel ideas and priorities, discussing needs, accommodations, and willingness to be flexible ahead of time can be helpful. If your companions are not willing to be accommodating during the planning stages – well, personally, I do find that to be very unfortunate, and ultimately those are not people who I wish to spend my vacation with. I don't expect others to bend over backwards for me, but I do expect basic inclusiveness and kindness. It's okay to change plans if a situation is not working for you.

What are your best travel tips? Share with the community in the comments below!

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