Two summers ago, I planned the family road trip of a lifetime. I bought an inexpensive and used camping trailer, loaded it up with everything from toiletries to food, and set out on a 21-day road trip through six western states. I planned our route meticulously, lining up activities and stops along the way, but what got lost in the shuffle was my own chronic health needs.
I assumed I would be able to stretch out my regular medical infusions to allow for my travel or refill my prescriptions on-the-go, but I quickly learned how wrong I was. I spent way too much of my vacation tackling my medical challenges instead of enjoying the sites, and I returned home worse for the wear.
That doesn’t mean it’s impossible to plan ahead for your health-related travel needs. Since my trip, I’ve learned how to better prepare for travel, and the trips I’ve taken since then have gone smoothly. Chronic diseases like neurological and gastrointestinal disorders, asthma or diabetes can require extensive monitoring and preparation. These tips from medical professionals, people with chronic diseases and their caregivers will help you safely navigate your next summer trip.
Start your packing list at least a month before your trip
It might sound like overkill, but that’s what Karen Toennis, a nurse at an Amyotrophic Lateral Sclerosis (ALS) clinic at Houston Methodist Hospital, recommends. When patients with the neurological disease come to her with questions about travel planning, she advises them to keep a log of their daily activities for a week or two so they can better prepare for their needs on the road. “Analyze your daily routine – what equipment, supplies and medications do you need to add to the packing list? Make sure you pack enough for the duration of the trip and then extra of everything,” she says.
Once you’ve identified what you’ll need to bring on the road, make sure you have enough of your prescription medications for the trip (including getting any necessary refills from your doctor beforehand). But don’t cut it close. “I always tell people to prepare and pack for the worst-case scenario,” says Toennis. This means packing extra of everything from medications to medical supplies. “Will that power outlet be where you need it? Probably not, so pack an extension cord,” Toennis said. “Will your flight be on time? Pack extra so you don’t risk running out of anything.”
Call ahead to ensure you’ll have what you need
It can be difficult to tell whether an accommodation will meet your needs from websites alone. Before you book a hotel or vacation rental, call to verify that their rooms will meet your needs. Be specific, and make sure you’re speaking to someone who works in the hotel you’ll be staying at instead of the national customer service line. This way, you’ll know of any potential challenges before you arrive.
The same thing applies for air travel. Wheelchairs, oxygen tanks, medical equipment and even medications can require extra security screening. The TSA offers a website with health-related policies that will help you plan ahead, and get through security faster.
If you require wheelchair assistance at the airport, let the airline know ahead of time. Make sure the airline is aware of your mobility limitations, particularly if you need help getting on and off the plane. Full-sized wheelchairs won’t fit through the narrow aisles, so you’ll need to request assistance if you’re not able to walk to your seat.
Keep in mind that service or therapy animals often require additional preparation (and fees). Contact your airline before you book your ticket to ensure you and your pet will have a smooth flight.
Identify your route ahead of time so you can plan your stops
If you’re traveling by car, bus or another form of public transportation, it’s important to know your route before you hit the road. This allows you to plot out possible stops for food that meets your dietary needs or for bathroom breaks. John Quinn, an ALS patient, says he seeks out hotel restrooms because the lobby bathroom is guaranteed to be compliant with the American Disabilities Act (for travel within the United States).
Monica C. is a patient with mitochondrial disease living in New York City. She says one of the challenges of traveling on the subway is knowing which stops have elevators. Identifying the accessible stops can mean the difference between a successful trip or not, and she’s found high-tech solutions to help. “If a subway stop doesn’t have an elevator, I know I’m going to pay for it so I always try to get off at stops that are accessible,” she says. “There’s an app I use that lets me know if a subway stop is wheelchair accessible.” Look for apps like these ahead of time to make travel easier.
Consider purchasing travel insurance — and make sure your medical insurance covers your trip
Every person with a chronic disease knows to expect the unexpected. “Easily my biggest struggle is that my chronic condition is unpredictable,” says Ana G., who suffers from gastroparesis, a digestive disorder. “I could be fine one day, and sick as hell within six hours. This makes planning extremely difficult.”
One way to protect your investment is by purchasing travel insurance for your summer vacation. Many plans are inexpensive, and provide peace of mind for people who worry that their health is unstable. If travel insurance isn’t feasible, look for refundable transportation and lodging.
Before you travel, check your medical insurance coverage. This is particularly important when you travel internationally, where many forms of insurance offer little or no coverage, but even domestic travel can impact your coverage when you find yourself in a state with few in-network providers. Dion Magee is a study manager for Clincierge, an organization that coordinates travel for patients participating in clinical trials. She suggests that patients with chronic diseases identify local facilities that cover them before they go, so they’ll be prepared in case of an emergency. It’s also important to pack a detailed list of health conditions and medications for emergency providers, along with the phone numbers of your health care providers.
Set realistic limits for yourself
No one wants to miss out on the fun, but it’s important not to push yourself too much to take in all the sites. “Make sure you have times throughout your travel to rest,” says Monica. “Your body will need it, even if you don’t think so.”
Whether this means planning designated rest breaks or listening to your body, come up with an approach that works for you and your health. Pack any specific foods that you’ll need while on the go, and make sure to stay hydrated—especially during the warm summer months. Keep in mind that you may need more rest than usual when you’re in the heat, and take precautions to limit sun exposure and avoid overheating.
Be flexible — and don’t stop traveling
It can seem overwhelming to fit a summer vacation in between infusions, doctor’s appointments and physical therapy. But no matter how much planning it takes to travel with a chronic disease, Guinn says it’s worth it.
“Don’t let your limitations stop you from traveling. I’ve made many wonderful memories and experienced so much the world has to offer with my family since my ALS diagnosis,” he says. “You can’t do everything that you used to be able to do, but you can still experience new places, foods and cultures.”
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