Travel lessons learned—Sandy’s story

Myositis changed the travel itinerary

When I tell you that myositis changed my whole world, I mean everything: It was 20 years ago. I was a young mother raising 2 extremely energetic boys. I was working full-time. We were happy. Then I started to notice I was having trouble walking long distances. I was getting fatigued easily. Weakness in my arms and legs made simple tasks harder. Stairs felt impossible—and we were living in a fourth-floor walk-up. I wasn’t going anywhere, because I couldn’t.

It didn’t help that my primary care doctor didn’t know what was wrong. They ran blood tests. They referred me to a rheumatologist. More tests. Then I saw a neurologist. It seemed like I was going in circles. It took almost 2 years before we figured it out—I had myositis.

I thought it would be better to know what I was up against. But resources and support for people with myositis were scarce back then. I was left with more questions than answers.

From soaring high to grounded

Travel was impossible. How could I plan a family vacation when I was dealing with exhaustion and pain every day? My doctors got me started on intravenous immunoglobulin (IVIg) infusions and steroids. Physical therapy became part of my routine, too. It was all helping, but progress felt slow.

I had become reliant on my assistive devices. Using a walker or a wheelchair at my age had an emotional impact on me. It was a mental hurdle I needed to process and move past. Eventually, though, I came to an important realization. These devices I initially resented were actually tools giving me more freedom. They weren’t taking it away.

Slowly but surely, my care team and I found a treatment routine that was helping. Some days were harder than others, but I was learning how to adjust to my limitations. Travel didn’t seem as far out of reach as it once had.

A trip on the VIP line

Being able to travel again was always a goal. But there was no magic wand. It took a lot of time and a lot of help from my whole care team. We worked together to develop a treatment plan that would help me get closer to my goals. When I finally felt physically and emotionally ready to get back out on the road, I booked a trip to Orlando—and it was great. But it was also a little humbling at times. I made mistakes. Still, I learned a lot.

After finally being able to get back to traveling, every trip became a learning experience. I learned to confirm if a hotel or resort I was staying at was ADA accessible—being sure to request a room with roll-in showers. I started calling airlines when booking travel to ensure there would be a wheelchair waiting for me at the curb that would bring me through security and all the way to the gate.

The first few times I was wheeled through the airport, I was a little embarrassed. That’s the thing with myositis: Not everyone can see how you’re feeling on the inside. To everyone else, I looked healthy. I imagined them thinking, “Why is she getting special treatment?” But on one of our trips, my boys called the airport wheelchairs “the VIP line.” It was a simple joke at the time, but it changed my whole perspective. They managed to turn something I felt embarrassed about into an inside joke that we still laugh about today. We were finding joy together. That mindset was so important to moving forward. It’s not always going to be easy, but it is worth trying.

Flying it forward

Today, travel is still part of who I am—and I’ve gotten pretty good at it. So good that my sister Shelley and I help people with mobility issues plan trips of their own. There are a lot of forces that try to take the things that we love away from us; we want to make sure that people know that there are resources out there that can help. Plus, helping people plan trips is a constant reminder that a diagnosis is not our destiny. Our goals are still ours to go after. And that we should take all the help available to us.