Dia duit agus fáilte – that’s Irish for hello and welcome – to this blog post about how to seek adventure and travel when you are living with chronic illness like rheumatoid arthritis or another autoimmune disease.
One of my biggest fears when I was diagnosed with rheumatoid arthritis was that this disease would curtail my ability to spend time outdoors, travel and explore. How could I possibly spend hours wandering through El Prado when I was in chronic pain? And what about all the hikes I planned to do at the US National Parks I have still to visit?
It’s been eight years since my diagnosis and in that time, I have explored New York City, including several museums. We celebrated our 30th anniversary in Paris where we walked the legs off ourselves! In 2022, I walked the Portuguese Camino – 260km from Porto to Santiago de Compostela and in 2024, we walked Hadrian’s Wall – 96 miles up and down the “rolling” hills of Northern England. I am delighted to share that while I still experience RA flares and pain from time to time, I am living proof that you can indeed travel while living with chronic illness.
And now, you can begin to explore new places from the comfort of your home – pull up a comfy chair, make yourself a cuppa and go on a travel adventure with me.
COMING SOON: I am adding travel posts regularly that will take you to Dublin and Galway, Portland and Bath. You will be able to read about hiking in New England, walking the Camino de Santiago and Hadrian’s Wall or skiing in the Rockies.
Keep reading below for great travel ideas and tips when you’re living with a chronic disease.
Table of Contents
Our travel story
I consider myself very fortunate to have been born into a family of travelers and adventurers. I had lived in three countries across two continents by my 10th birthday and had visited four other countries on vacation. My parents both believed it normal to travel across the earth for jobs, exploration and fun; is it any surprise that I love to travel and explore?
Tom did not grow up traveling far and wide but his job as a US Marine took him to more than fifteen countries on five continents and nurtured a powerful love of new experiences.
It can be challenging to travel with a large family but we adventured as much as we were able while the kids were growing up – lots of trips to and from Ireland and a fantastic around-the-world trip that included Thailand, New Zealand and Tahiti.
Our bucket list of places we wanted to visit grew monthly and we enjoyed dreaming about our future adventures. And then in 2016, the future I had been planning disappeared in a single phone call from my doctor – I had rheumatoid arthritis and I could expect the disease to impact every area of my life. Bloody hell! That was a doozie of a phone call.
I found a functional medicine doctor, made radical changes to my diet, lifestyle and habits and over time have managed to put my autoimmune disease into remission.
Today, we are a travel couple! We sold most of our belongings and moved full-time into a DIY campervan in Feb 2021 so we could travel and experience as much as possible of this great beautiful planet. Check out our van life adventures here.
I wrote this post in February 2022 when we had lived in our van for a year. We continued our van-life adventure until the end of 2022 when we bought a home two doors from our oldest kidlet and family and just across the water from kidlets #2 and #4. I have not changed the van-life details at all and am always up for questions relating to either living in a van full-time or how to travel in a van while living with chronic illness.
Road trip travel while living with chronic illness
We went on our first grand road trip adventure in 2013, when Kidlet #4 was 16 – the three of us hopped into a Subaru Outback and headed across the US for nine months. I had been through a horrible few months when my epilepsy caused so many seizures I experienced significant brain damage. It is no surprise that this caused me to rethink certain aspects of my life and it made sense that we do something outrageous and fun. We camped, hiked, ate and explored our way through 29 states, visited more than 30 National Park sites and drove more than 28k miles before returning to the Seattle area.
8 years later, Tom and I embarked on another grand travel adventure. This time in a Sprinter van, my epilepsy and depression under control but now I was also dealing with rheumatoid arthritis. I wondered (and worried) if I would be able to travel full time while living withe a chronic disease.
One of the best parts of road trip travel is its flexibility. Top 8 tips for a great road trip:
- SLOW DOWN!! This is my biggest tip for road travel. Traveling with chronic illness can be simple and manageable as long as we set realistic expectations and slow down!!
- Have a general plan. And be willing to make adjustments along the way. We have been chased by weather on several occasions and also followed interesting detours, like the Lincoln Memorial Monument on I80 in Wyoming. Expect the unexpected!
- Decide how long you are willing to drive each day. We have a 6-hour driving rule that we adhere to 95% of the time. Unless there is a (very good) reason to push harder, we don’t. Know your own limits and honor your body’s needs. Also, take regular breaks for food, exercise and exploration. This is especially true when you live with chronic pain, like rheumatoid arthritis and other health conditions that make driving uncomfortable or difficult.
- Know what you want to see and do. Most of our driving is for adventure and we always search for National Park sites and we use the AllTrails app to find hikes/walks that will stretch our legs and feed our souls. We follow our interests when mapping out a route. We drove from Virginia to Texas via Atlanta for an art exhibit and then on to Birmingham AL to visit the Civil Rights Institute and along the way discovered several great hiking trails.
- Ask the people you meet for recommendations – it’s a great way to strike up conversation and learn about hidden gems. We found a wonderful B&B in Pennsylvania and ate a delicious Shepherd’s pie in Nashville thanks to friendly suggestions.
- Keep your vehicle in tip-top shape. Be sure to change the oil, address any mechanical issues quickly and keep your vehicle clean and comfy; after all, you’ll be spending a lot of time in it.
- Plan for no-phone-service. Either download directions or have a backup map plan. Do you want to listen to books, podcasts or music? Have your favorites downloaded and ready to go. If you plan to find dinner with your phone, scout out several places ahead of time just in case.
- Whether you are camping or hitting the hotels, bring your own pillow! Nothing helps a good night’s rest more than your own comfy pillow. Just be sure to grab them on your way out in the morning!! My body pillow takes up as much space as a small human but it is well worth it as my body sleeps much better with it.
National Park Trips for travelers with chronic disease
Many visits to National Parks will be road trips; by their very nature, some of the most splendid places in the US are remote, isolated and hard-to-reach treasures. No matter which (or how many) parks you plan to visit there are a few guidelines that will make your adventure even more enjoyable.
- Plan ahead. Many National Park campsites book up months in advance and finding nearby accommodations can prove very challenging. If it’s in your budget, staying at the NP’s hotel or lodge is often an experience by itself. Staying in Paradise Inn on Mt Rainier was a delight and very special treat for us; it is an historical building that offers beautiful rooms, good food and easy access to the iconic Skyline Trail. Knowing you will have a comfy place to rest after a day of adventures reduces stress and keeps you mentally and emotionally strong.
- Pick the right time of year to visit the park. If possible, visit during the shoulder or off season to avoid the crowds. Lassen Volcanic NP is gorgeous in the winter snow, Acadia NP is perfect in early September and catching Glacier NP right before the summer allows you to enjoy long evenings and snow crusted trails. I love to hike but too many people on the trail will stress me out, especially if I’m having a challenging health day.
- Talk to the rangers. They are a wealth of information and suggestions and can point you towards activities you might not have considered. We discovered Marsh-Billings-Rockefeller National Historical Park in Vermont thanks to a ranger at another park.
- How do you want to spend your time in the park? Do you want a long strenuous hike or prefer a paved path with great views? Would you like to sit by the water or watch the night stars? Is riding a horse into the Grand Canyon on your bucket list? Some activities will require reservations and advanced planning. And sometimes, you have to let go of something you had planned to do because it is not the right day/time for it. We planned to hike up Mt Washington, NH but my body spoke loudly and asked me to let it rest so we took the train instead; it was a wonderful experience because I listened to my body.
- Bring the right gear. Visiting a National Park means lots of outside time so pack accordingly. Rain coat, boots, flip flops for the shower and waterfalls. Have a light pack you can use for a hike that holds your binoculars and snacks.
- Visit the NPS site for current park information, planning tools and much more.
City visits
I am a city girl. At least, that is what I tell people. I grew up very close to the center of Dublin and love to spend time in NYC, Paris, San Francisco and yet, most of our trips revolve around the great outdoors – lots of hiking, skiing, time away from civilization. Perhaps the thing I love most about city travel is the opportunity to fill up on art museums, theater, architecture, great food on every corner and the hustle and bustle of humanity. Followed by the opportunity to disappear off to the mountains or ocean and breathe in the silence and stillness that soothes my soul (and body.)
I know city visits may not be everyone’s dream travel adventure but here are a few tips to make even the most reluctant city visitor have a fantastic experience.
- Stay a day or two longer than you think you need. (In other words, slow down!!) Yes, you can see much of a city in just 3/4 days but that can be stressful and leave you feeling exhausted at the end of your vacation. Traveling with chronic illness means making adjustments and listening to your body’s needs. Our last trip to NYC, we stayed 8 nights and were able to enjoy a few lazy days just wandering Central Park or riding the Staten Island ferry to get lunch. We didn’t have to pack 3 museums or attractions into a single day and could sleep late if that’s what my body needed.
- Pick your top must-see/do attractions and plan around those. Just because everyone says you must see the Louvre (Paris) /Big Ben (London) / Jewelry Markets (Bangkok) doesn’t mean you should. You know what makes your heart sing – go do that! I visit libraries and small churches; Tom especially enjoyed Musee de la Monnaie (coins) in Paris and we were both deeply moved by the African Burial Ground in NYC. If you decide to visit a tourist hotspot, plan to take breaks, learn about accessibility (elevators etc…) and find out if there is a time when there are fewer crowds.
- Choose the place you stay based on geography rather than strictly on price. It will save you lots of time and $$ if your accommodation is close to where you plan to spend most of your time anyway. Unless, of course, you are staying in your van, in which case, spend time researching the iOverlander app as well as driving around to get a feel for where you feel comfortable and safe parking and sleeping. Being closer to your accommodation also means you can return to your “home” if you need a rest or time away from people.
- Bring comfy shoes and plan to walk… a lot! One of the best ways to enjoy any city is on foot. Choose your shoes based on your body’s needs rather than fashion! Ask locals for suggested neighborhoods to find hidden gems for foodies, shoppers, architecture-lovers or whatever tickles your fancy.
- Bring a small day pack to carry water, snacks and any small souvenirs you might find. Consider leaving your valuables at home, in the hotel’s safe or tucked away in your van and carry ID, money and a credit card in your pocket. (This is a very personal tip having lived in cities where pickpocketing is not unusual!)
How to visit family and friends
One of the biggest deciding factors for us when we were considering living in a van full time was the desire to visit our kidlets as often as possible. At the time, they lived in four different time zones across the US and we were in the middle of Covid which for us meant no air travel at all. In our first year on the road in a van, we spent six months in and out of Virginia Beach where Kidlet #1 and his family lived, we visited Kidlet #3 twice in sunny SoCal, we skied with Kidlet #4 and we were able to spend three months with Kidlet #2 when tragedy hit. What a gift it has been to enjoy these visits without the pressure of living in their space or the stress of having to afford long-term accommodations.
Not everyone lives or travels in a van but when you want more time in a location, especially when you’re visiting friends and family, it might make sense to find an apartment or home where you can make yourself comfortable for a month or more. I know I like my own space where I can retreat and rest and take a day to recover from the overwhelm that can sometimes accompany traveling with a chronic illness.
Here are my top tips to properly enjoy the precious time you spend together with your loved ones.
- Do not stay in their home if at all possible, unless they have a separate space where you can make a home and feel safe to take a break when you’re dealing with more pain or stress than usual. Consider staying nearby so you can walk back and forth easily without being constantly underfoot. Because we’re in the van, we often park on their street or in their apartment complex (with permission, of course!) If you do stay in their home, honor their house rules and be clear about your own health concerns and needs.
- Allow them to host you. Let them show you around their neighborhood, introduce you to their friends and generally make most of the plans for your visit. When Kidlet #2 lived in Omaha, she always had something new for us to experience each visit – a hike or museum or one time a delicious vegan restaurant!
- Depending on how long you’re visiting for, plan some getaway time – for you and for them. We visited Kidlet #1 & family on and off over six months – a few weeks with them, then off to North Carolina, a month together, then off the New England; it worked beautifully and allowed us to get to know the grandkids without that intense condensed-time pressure. We found a long-term stay hotel when the weather turned too hot and sticky – an option we would definitely do again if needed.
Go on an adventure locally
What if I don’t really like to travel but want adventure?
Not everyone has the wanderlust gene but many of us want to experience different things, try novel activities and discover new ways of thinking and being. Here are some ways to explore and go on an adventure close to home. And one of the great advantages about finding adventure close to home is the ability to return to your own comfy bed at the end of the day.
- Visit your local library to chat to the librarian; they are often a treasure trove of suggestions. In Seattle, a library membership gives you free entry to several great museums. Perhaps your local library offers something similar.
- Have you ever considered taking an ethnic cooking class or learning a new skill like pottery or welding?
- Sign up for a new-to-you exercise class: Ballet, Taekwondo, Stand-Up-Paddleboarding.
- Join a meet-up group to make new friends, learn a language or study archeology.
- Put on your comfy shoes and go walking in a neighborhood you don’t know very well. Stop for coffee and conversation; ask for suggestions of places to visit.
- Go to high school or college events – theater productions, sports events, fairs etc… They are often wonderful experiences, you are supporting the next generation in your town and most school and college events are much more affordable than their professional counterparts.
- Volunteer for one-off events like marathons, fundraisers and parades. It’s a great way to engage in the community without the need for ongoing participation.
- Explore local breweries, wineries, art co-ops and theaters – you will be amazed at the talent and passion that lives in your own back yard.
Final Thoughts
It is still shocking to me how differently our lives are now that we are empty nesters and living in a van full time. Recently, we were planning a California visit to Kidlet #3 and our first 2022 skiing trip and I lamented that we only had four weeks to pack in everything we wanted to experience. Then I heard myself and laughed! Four weeks is a pretty decent length for a vacation, especially as we were heading out to Colorado just ten days later, this time for seven weeks!
I don’t know how long we will live in a van, for now, we are enjoying it and it works for us and for the relationships we want to build with our four kidlets. Staying open to new ways of being in the world allows us to explore and experience life in all its glory.
As mentioned, we no longer live full-time in a van though we do travel in it quite often, especially for 6-10 weeks each winter for ski season.
Whether you travel full time or for one week, the experience stretches and fills you in unimaginable ways. My wish for you is that you travel well, enjoy each moment to its fullest, breathe into the space the new adventure creates in you and please come back and tell us about it. My wish for you is that you are able to figure out how to travel while living with chronic illness and get the most adventure and joy out of life as you desire.
If you have a travel story you’d like to share here, please reach out to me; I’m always open to new voices and experiences.
