Having Fun at Disney World with AS

The week before Christmas last year, my dad’s family took us on an amazing trip to Walt Disney World in Orlando, Florida. It was Keegan’s second time to visit, my 11th time, and my daughter’s first. People saw the pictures I posted on Instagram and asked the same question, “How did Keegan do it?” While no family vacation is without pain for Keegan, we found our ways to manage AS (and a group of 11 family members including a young toddler) and make sure our time there was magical.

Before I jump into these tips, I’ll mention that Keegan, my husband with AS, and I have been to Walt Disney World twice. The first time, on our honeymoon, was much more physically difficult for him. It was before his double hip replacement and starting Humira, a biologic. The second time with my family, we were better prepared. We knew the best times of day for his symptoms and the worst. We knew what foods and drinks cause inflammation.

It’s not about planning, it’s about having options

One misconception about going to Disney World when you have a chronic illness is to have everything planned out. While this does prevent problems with spending hours finding a place for dinner or being bummed out that we didn’t ride our favorite ride, it can feel tough to ask for a break. Having each minute of a day planned can result in a trip that feels rigid and prescriptive. I used the Walt Disney World reddit and other online resources to plan options for mornings or afternoons when Keegan wasn’t feeling well. We always had a plan B in our back pocket.

The one piece I will always say to plan for is downtime. If you’re a morning person, plan for resting back at your hotel in the afternoon. If you’re not an afternoon person, then enjoy a slow morning and find some time to relax. The downtime helped restore Keegan’s mind and body throughout our trip. Also finding places within the park to rest is key. In busy times, benches and seating can become limited. I took note of all the locations in the parks we could sit and relax while the rest of the family could go on an attraction.

Know your limits

This may sound silly, but practice walking before going to Disney World. I felt comfortable going on both trips because I had been running and recently completed multiple 5Ks. That’s not everyone going to Disney World, and it definitely wasn’t Keegan. He wasn’t sure what he could do in a day, which is important because we walked an average of 8-13 miles per day on both trips. (Good thing I had a fitness tracker to know!) We walked regularly as a family in our neighborhood the months leading up to the trip. This got us all in better shape to walk around the parks!

Get disability access service

Before both trips, Keegan’s rheumatologist wrote a letter that Keegan couldn't stand or sit for prolonged periods of time. This included waiting for rides. Luckily, Disney’s workaround is to add to our account disability access service. Keegan didn't have to wait in the queue at all! Rather, we just waited the time elsewhere and returned to the ride when the time was up. For example, if the line for Space Mountain was an hour, we would check-in then roam other parts of the park. Then we hopped on using the “Fast Pass” queue.

This was a lifesaver for us. I was so worried about going about Keegan standing for prolonged periods of time and gave up on him riding the attractions we wanted to go on. Instead, we got to take breaks around the park and find snacks in between meals.

I’d love to know if anyone else has any tips on traveling to Walt Disney World with AS. What have your experiences have been like and what were your most magical moments?

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