From Grounded to Globetrotting: How I Became a Digital Nomad While Living with MS

I’ve loved travel since I was a kid, but my MS medication regimen created a barrier to my nomadic aspirations — until I switched to twice-yearly infusions.

Ever since I was a kid, traveling has been a significant part of my life.

My mom worked in the hospitality industry marketing resort hotels, so I had the privilege of tagging along on her trips to conferences all over the world. Experiencing new cultures, tasting new foods, and having exciting adventures — I grew up feeling the allure of travel. When she wasn’t on the job, we often took advantage of the beautiful sights in our own cities. As an adult, I inherited my mom’s travel itch.

Watching travel video after travel video led me to learn about the lifestyle of what’s now often called a “digital nomad,” a person who travels long term and works remotely anywhere that there’s a WiFi connection. I was curious about this modern explorer’s lifestyle, but it felt like an inaccessible dream, or at least something I might do later whenever I could afford it. Eventually.

After 15 years with relapsing-remitting MS, I was rediagnosed in 2020 with secondary progressive MS, and I was hit with a major reality check: Everything that my doctors said, everything I read … was happening.

As I came to terms with this next phase of this debilitating disease, in which I now have foot drop and spasticity as recurring symptoms, I realized I wanted to make the most of my mobility while I still could. I wondered, could I realistically be a digital nomad even while managing my MS?

Join the free MS community!

Connect with thousands of members and find support through daily live chats, curated resources, and one-to-one messaging.

Sign up

Becoming a digital nomad with MS

Since I can’t wait until later to see and do everything, I set a goal to start checking things off my bucket list by taking extended trips.

First, I made a list of questions I wanted to research about how to shift into this lifestyle. I quickly realized I was already a step ahead of the game: I had a remote job that I could do from anywhere.

Since graduating college, I’ve worked from home for a PR company taking on projects in digital marketing. Lately, I’ve also been working as a telephone-based Spanish interpreter, a job I’m qualified for simply because I speak the language fluently. I’m also a freelance writer, among other odd jobs and creative projects.

After months of this research and getting the green light from my neurologist, I got rid of most of my major bills, put all my stuff in a storage facility, and started packing my bags. But before I could go anywhere, I had to first figure out the situation with my medication.

The medication situation

Injections, pills, and infusions: These various formats for disease-modifying therapies (DMTs) have all guest-starred as part of my MS routine since my diagnosis in 2005.

At the point when I decided to really try to become a digital nomad with MS, I was on a monthly infusion of Tysabri. This allowed me windows of time for shorter trips only, since I’d have to be home every month to get my infusion.

Ultimately though, I was interested in taking fewer flights and having longer stays that would extend the duration of my travel visa, typically 3–6 months.

Instead of jam-packed weeklong itineraries, I prefer slow-paced travel. Taking 6-month trips would allow for stress-free exploration. Then I could come home for a few months to handle medical appointments and check-ups before my next travel adventure.

That was the goal at least. But to make it work, my dosage schedule would have to link smoothly to my travel schedule and I wondered which, if any, DMTs might be able to support this. My next step was to talk with my doctor about my options.

In my own research, I came across a relatively new DMT (available since 2017), an infusion called Ocrevus that was administered once every 6 months. I quickly realized I wouldn’t have to think about my meds for 6 months at a time. That’s only twice a year! This medicine could potentially be the key to taking longer trips without the need to come home frequently for a dose of a DMT.

When I asked my doctor about medication options that could potentially fit into my desired lifestyle, I made sure to ask about this newer drug. He explained it was a monoclonal antibody that decreases the immune system’s B cells, and that basically, he thought it was too intense an option for me at the time. He said that it would be our last resort in searching for a medicine that worked for me.

However, to accommodate my lifestyle preferences, he switched me to another type of DMT, a daily pill called Mayzent. It’d be delivered monthly, but I could theoretically order it in bulk to take with me abroad.

I finally had a confirmed MS plan to move with confidence toward my travel goals! As it turned out, though, securing enough of this medication was the most complicated part of the prep for my voyage.

I spent hours and hours on phone calls waiting on hold. My insurance company was reluctant to approve an extended amount of these expensive medications, making it difficult to secure the necessary doses for longer trips like the ones I dreamed about. The constant need to refill prescriptions and coordinate with healthcare professionals created a barrier to my nomadic aspirations.

After months of follow-ups, I finally secured a 6-months supply of tablets to take with me, and my dreams were really happening: I went on an awesome trip to Ecuador (where the rate of MS is one of the lowest in the world, by the way) and tasted all its flavors and saw all its wonders. Then, after my travel visa expired, I came home, ready to plan my next trip.

Finding an even better solution

I knew I didn’t want to repeat the process of hustling to get my claim approved for another 6-month supply of meds. I dreaded the thought of listening to more hold music, and figured they’d probably deny my request anyway. I was worried for a while that I’d only get to take this one trip and that this lifestyle wouldn’t be available for me long term.

When it was time for my follow-up appointment, I again asked my neuro about other medication options. First, he wanted me to have a new MRI, which confirmed it was indeed time to switch to a more potent DMT for my MS treatment.

After discussions with my healthcare team, I switched to Ocrevus, taking twice-yearly infusions to treat my MS. They assured me that the infusions were a good treatment option for my current stage of MS, and that it would also reduce the burden of frequent medication management during my travels.

Better symptom management, better lifestyle

I probably shouldn’t be happy about needing to take stronger medication because of my progressing illness, but I couldn’t help but be pleased to find a DMT that could potentially stabilize my MS and also allow me the freedom to live a digital nomad lifestyle. I would now only need to make a pit stop in my home city once every 6 months.

This infusion treatment helped me better manage my symptoms, and supported my overall well-being. I experienced reduced fatigue, increased mobility, and better cognitive function (aka less brain fog), allowing me to fully enjoy my travel experiences. This change reinforced for me the importance of finding a treatment that suits individual MS needs.

Ocrevus was a game-changer for me.

Now, I didn’t have to be constantly worried about running out of meds, losing them at the airport, keeping them at the right temperature in transit, or having to interrupt my travels for medical reasons. I could take my time in my travels, move slowly, and visit different corners of the world at a calmer pace without the constraints that previously held me back.

Of course, it’s also important to be sure I have adequate supplies of all my other meds or prescriptions in hand so I can pick them up at my destination. I also make sure I know where I can get medical care nearby in case of a flare or other medical concern.

A week after getting my first Ocrevus infusion in March 2022, I went to Western Europe for 6 months with my boyfriend and we visited 6 countries: Portugal, Spain, France, Netherlands, England, and Scotland. Since then, we’ve also taken domestic trips to places like New York City, Denver, and Richmond, Virginia.

It’s been a liberating experience that allowed me to embrace my dreams of being a digital nomad with MS. Now, we’re planning another round of adventures! Maybe 90 days in Colombia or Costa Rica? Maybe Thailand or Cambodia? I’m excited!

The takeaway

While infusions have been a transformative treatment option for me, it’s essential to acknowledge that they may not be suitable for everyone.

Each person’s MS journey is unique, and treatment decisions should be made in consultation with healthcare professionals. Factors such as individual disease progression, treatment response, and other medical considerations may influence the suitability of infusions as a treatment option.

It’s crucial to explore and discuss various options with your healthcare team to determine the most effective approach for your specific circumstance.

Switching to a 6-month dosage schedule of infusions for my MS treatment was a pivotal decision that eliminated the barriers that previously hindered my travel aspirations. For me personally, the newfound freedom and positive effects on my MS symptoms have been remarkable. I’m feeling great, and I’m thrilled for my next travel adventure as a digital nomad with MS.