Med Gear, Mobility & Marshmallows: The Ultimate Packing Guide for RV Travel with a Rare Disease

You know that feeling when you’re halfway to your destination and suddenly realize you left your most important medical supply at home? Yeah, we’re not doing that this trip. Whether you’re setting off in a cozy travel trailer or a luxury fifth wheel, living with a rare disease or mobility challenges means packing isn’t just about clothes and snacks—it’s about safety, comfort, and making sure every mile is as stress-free as possible.

Statistics show that nearly 1 in 10 people in the U.S. live with a rare disease—and for many, accessibility on the road can make or break a trip. And, to be honest, before I started my career at Camping World in late 2024, I honestly believed that camping just wasn’t in the cards if you had certain health conditions—especially mobility challenges. Then I met a few customers who completely proved me wrong. They showed me that the only real limitation was what I’d created in my own mind. This post is a collection of stories they've shared with me.

This guide blends practical know-how with first-hand RV life wisdom to help you create a mobile wellness hub, pack smarter, and keep joy on the itinerary. Let’s get into the must-haves you’ll be glad you didn’t forget.

Medical Essentials – Your Health Comes First

Susan shared, "I’ve learned the hard way—packing for an RV trip with a rare disease isn’t just about “remembering the meds.” It’s about building a mobile safety net so you’re never caught off guard. Once, a road closure turned a six-hour trip into almost twelve, and I was down to my last dose of medication. The anxiety alone could’ve triggered a flare. That was my wake-up call: always pack more than you think you’ll need." If your trip is a week, bring two weeks’ worth. Delays happen, pharmacies might not have your exact prescription in stock, and small-town doctors may not feel comfortable issuing refills for complex meds.

For those of us with extra equipment—sharps, oxygen, nebulizers, IV bags—it’s not just about bringing them; it’s about organizing them in a way that’s quick to grab. Susan keeps hers in a labeled bin with a bright red handle so even if she's tired or foggy, she knows exactly where it is. If you use sharps, bring a portable sharps container. Trust me, you don’t want to be figuring out what to do with used needles in the middle of a campground.

Bob shared in a visit searching for better Wi-Fi, "One of the best upgrades I ever made to my travel routine was setting up a small telehealth station." A lightweight tablet, a reliable hotspot (because campground Wi-Fi is… well, you know), and a few key devices like a blood pressure cuff and pulse oximeter can turn your RV into a mini clinic. Bob continued, "I’ve had a telehealth appointment in a national park before—parked under a pine tree—because a med dose needed adjusting. That would’ve been impossible without a reliable connection."

And then there’s the power backup. Medical devices aren’t optional, so Bob always travels with at least one battery pack dedicated to his health gear. A small solar bank or even a quiet, compact generator can be a literal lifesaver if you lose shore power. Ben added, "I once met a fellow RVer who ran her CPAP machine on an EcoFlow power station for three nights straight during a blackout. It kept her safe and sleeping comfortably until power was restored."

If you have temperature-sensitive meds—like biologics—invest in a travel cooler or a mini fridge that runs on both DC and AC power. Susan says "I use a small RV fridge drawer just for mine, with a thermometer inside so I can monitor temps on hot days."

Finally, don’t overlook your medical ID and emergency contacts. I've heard many say that theirs is in a brightly colored pouch velcroed near the RV door. In an emergency, a stranger shouldn’t have to dig through your kitchen drawers to figure out who to call.

At the end of the day, medical essentials are more than just “stuff.” They’re your peace of mind. They’re the reason you can sit by the campfire, roast a marshmallow, and not be silently calculating how far the nearest hospital is.

Mobility & Accessibility Gear for Independence

Malcom shared, "If there’s one thing I’ve learned from traveling with mobility challenges , it’s that independence isn’t about doing everything alone—it’s about having the right tools so you can do the things that matter most without feeling drained or unsafe. Every piece of gear I pack is like an extra teammate on the road, making sure I can focus more on the view out the window and less on whether I’ll be able to get in the door." Though, he may have used more colorful language.

Let’s start with portable ramps or folding threshold bridges—absolute lifesavers. Malcom added, "I still remember pulling into a “fully accessible” campsite only to find the picnic table area up on a concrete pad with a lip that my scooter couldn’t clear. That $150 portable ramp I bought on a whim? Worth every penny. I’ve used it for camper steps, uneven ground, and even to help a fellow traveler roll their cooler inside." The folding kind stores easily under a bed or in the underbelly storage, and if you get one with a handle, it’s a breeze to grab when you need it.

Next are temporary suction-cup grab bars. I’m a fan of permanent installations for long-term setups, but when you’re on the road—or renting an RV—you need something quick and removable. Malcom keeps a couple in the bathroom and one by the bed. Just make sure you re-check the suction every couple of days; nothing wakes you up faster than leaning on one that’s come loose.

For mobility devices—whether it’s a foldable rollator, wheelchair, or scooter—the key is secure storage. In his fifth wheel, Malcom keeps his rollator strapped just inside the entry door so he can grab it before taking that first step inside. A simple set of bungee cords or cargo straps works wonders for keeping devices from shifting while driving. If you’re traveling with a scooter, check its turning radius before you buy; not all RV layouts are scooter-friendly.

Inside, anti-slip mats, bath/shower chairs, and raised toilet seats make everyday tasks safer and less exhausting. Malcom has learned the hard way after a wet floor incident that a non-slip mat in the shower is not optional—it’s essential. And honestly, "a raised toilet seat might not sound glamorous, but it saves my knees and hips every single day."

If your RV feels cramped, offset friction hinges can create just enough clearance for a mobility aid to pass through. Malcom shared "I installed offset hinges in the bathroom door, and it gave me over an inch of extra space—just enough for my rollator to fit without me having to fold it every time."

Finally, step stools can be game-changers. Some RV steps are just too tall, especially if the ground isn’t level. Malcom says, "I carry a lightweight folding step stool for quick fixes and have my eye on a powered lift for my next upgrade."

The truth is, this gear isn’t just about making travel possible—it’s about making it enjoyable. When you can get in and out of my rig easily, move around safely, and take care of daily tasks without fear of falling, you have more energy for the fun stuff: campfires, exploring trails, and—yes—roasting marshmallows under the stars.

Comfort Must-Haves for Flare Days

Doris once told me, "I’ll be honest — when I first started RV life, I completely underestimated how important comfort planning was. I had my meds, my adaptive gear, my snacks… but when a flare hit on day three of my first long trip, I realized I had set myself up for survival, not comfort. And those are two different things entirely."

If you’ve ever woken up in the middle of the night with joint pain or muscle spasms, you know that the quality of your bed matters more than the quality of your campground view. She continued, "I swapped my standard RV mattress for a premium one, and it changed my life on the road. Seriously — less tossing and turning, fewer pressure points, and a little more ahhh when I lay down." Some friends swear by weighted blankets for anxiety or sensory regulation, but for me, in summer heat, a cooling blanket is gold. It’s all about listening to your body and packing for your kind of comfort.

Then there’s the noise factor. Campgrounds can be surprisingly loud at night: kids chasing fireflies, neighbors laughing by the fire, or the guy two sites over who thinks midnight is the perfect time to test his generator. A white noise machine has been Doris' secret weapon, drowning out the chaos with a steady hum. On extra sensitive days, she grabs earplugs—simple, cheap, and worth their weight in gold.

Then there are the little relief tools—essential oils for calming my mind, a red light therapy pad for muscle tension, and cold packs for when inflammation flares. Keep non-refrigerated items in a small basket by your bed so you're not digging through cabinets at 2 a.m.

And let’s talk light — because for some of us, light sensitivity during a flare is brutal. Blackout curtains are a must for mid-day naps, and light-filtering sunglasses let some step outside without triggering a migraine.

Seasonal comfort is the final piece. Rechargeable hand warmers have been my winter savior when my circulation goes south. In summer, cooling towels are like portable air conditioning for your skin — Doris even keeps a couple in a small cooler so they’re extra refreshing.

Here’s the thing: comfort items might not feel “essential” when you’re packing, but when you’re in the middle of a flare, they can turn misery into manageable. And for me, that’s worth every bit of space they take up in a rig.

Nutrition & Hydration While Traveling

When you live with a rare disease, what you eat and drink on the road isn’t just about taste—it’s about managing symptoms, keeping your energy steady, and avoiding a flare that could sideline your trip. Malcom learned that the hard way on his very first RV adventure. He had packed plenty of food… but not the right food for his body. Two days in, he was bloated, foggy-headed, and staring down a campground bathroom like it was a sworn enemy. Never again.

Now, he sticks to flare-friendly snacks that he knows won’t trigger his symptoms—think low-sugar trail mixes, gluten-free crackers, and allergen-free protein bars. If you’re sensitive to certain ingredients, label-checking is your best friend. Keep a small “safe snack” bin in the RV so you don’t have to dig when hunger hits. Oh, and I always pack more than I think I’ll need. The road has a funny way of extending travel days when you least expect it.

For easy-prep meals, I'm a big fan of things that can be whipped together with minimal effort. Bone broth packets are a lifesaver on cold nights or low-energy days—just add hot water and you’ve got a nutrient-rich drink that soothes the gut. Smoothie powders are another go-to, especially if you don’t have the bandwidth to cook. Throw in a banana or frozen berries from the RV fridge and blend them up in a compact mini blender.

Hydration is where a lot of travelers drop the ball, and with a rare disease, that can hit you fast. Malcom keeps collapsible water containers for camp setups, a small portable filter for off-grid days, and electrolyte tablets to help replenish minerals when he's sweating or dealing with fatigue. I’ve learned that even slight dehydration can amplify symptoms, so I set reminders on my phone to sip steadily throughout the day.

Adaptive kitchen tools can make a world of difference in and out of the RV. Easy-grip utensils reduce hand strain, especially on days when joint pain is kicking up. Doris uses cupboard bars so she's not chasing storage containers around the floor after every bump in the road. And that little mini blender I mentioned? It’s compact, rechargable, and perfect for making nutrient-dense shakes without hogging counter space.

Finally, Susan stocks her RV fridge with whole-food basics—pre-washed greens, cooked chicken strips, berries, and oat milk. She also keeps a small stash of frozen meals she made at home, so she knows exactly what’s in them. That way, even if she's too tired to cook, she can eat something nourishing that won’t set her back.

In short: when it comes to nutrition and hydration on the road, think simple, safe, and supportive. Your body will thank you, and you’ll have more energy for the adventures you actually want to remember.

Entertainment & Emotional Support

Susan once told me "I’ll be honest with you — when I first started RV traveling after my diagnosis, I thought I had to spend every waking moment “making the most” of the trip. Hiking all the trails. Seeing all the sights. Keeping up with everyone else. And you can probably guess how that went — I’d push myself way past my limits, end up in a flare, and spend the next two days staring at the ceiling of my RV, feeling frustrated."

That’s when most of us learn the magic of having rest day joy. Just because our body says “pause” doesn’t mean our spirit has to feel stuck. Now, Susan packs an “emotional support” kit just like I pack my meds. It’s made all the difference for her.

On days when her body needs extra TLC, she reaches for her journal first. Nothing fancy about it — some days it’s gratitude lists, other days it’s a brain dump of everything that’s bugging me. She has found it’s a way to process the trip in real time. Audiobooks and podcasts are another lifesaver. Pro tip: download a mix before you hit the road because Wi-Fi in campgrounds can be… well, let’s call it “ambitiously optimistic.” A couple of true crime podcasts, a nature documentary series, and one or two lighthearted comedy shows keep her company while she rests.

Also keep a “travel hobby” handy — for Susan, it’s knitting. It doesn’t take much space, it’s repetitive in a soothing way, and at the end she has something to show for it. I’ve met others who swear by sketching or photography, especially since you can capture those quiet moments that don’t make it into the tourist brochures.

Tech has its place, too. Bob keeps a tablet loaded with offline streaming downloads for those long afternoons when he just wants to curl up in bed and watch something familiar. Bonus points if it’s a comfort show he's already seen a hundred times — there’s something grounding about knowing exactly what’s coming next.

And then there’s the nature connection. Bob also travels with a compact stargazing guide and a birdwatching app that works offline. On nights he has a little extra energy, he’ll sit outside with a blanket and a warm drink, identifying constellations or listening for owls. It’s a reminder that even from a camp chair, the world is still big and beautiful.

Finally, never underestimate the power of sentimental items. For Malcom, it’s a blanket his grandmother made and a small framed photo of his dog Otis that passed last year. Those little pieces of “home” make any RV park feel like yours. When your health is unpredictable, those familiar comforts can help anchor you.

Because here’s the truth — entertainment and emotional support on the road aren’t about killing time. They’re about creating moments that fill your heart, even when your body needs to rest. And if you pack for that, you’ll never really miss out.

Bonus – Must-Have Gear for Accessibility-Friendly RVing

Stefan said, "When I first started RVing after my Parkinsons diagnosis, I thought I could just “make do” with what I already had. Big mistake!" The truth is, accessibility gear isn’t just about comfort—it’s about making the road feel like it belongs to you again. Over the years (and a few “wish I’d known that sooner” moments), Stefan found a handful of game-changing items that have made every single trip safer, easier, and way more enjoyable.

Portable ramps are number one on Malcom's list—specifically the ones from Prairie View or EZ-Access. I learned early that campground terrain can be a mixed bag. Some sites have perfect, flat concrete pads, and others… well, let’s just say I’ve had to navigate gravel hills and uneven grass patches that would make a mountain goat nervous. A lightweight, folding ramp lets you roll your scooter or step easily into your rig without needing to call for help. Bonus: the good ones don’t bounce or feel wobbly underfoot, which means less stress on joints and more independence.

Now, let’s talk power stations—EcoFlow and Bluetti are my personal favorites. When you rely on medical devices, “oops, the power’s out” isn’t just an inconvenience—it’s a safety risk. These power stations have saved many people in more than one surprise blackout, and they’re quiet enough that you can run them right inside your RV without worrying about fumes.

Comfort is another big deal, and Zero Gravity camp chairs have been my ticket to enjoying the outdoors without regretting it later. They tilt back just enough to take the pressure off your lower back and knees, and the locking mechanism means you won’t suddenly jolt upright when you shift. On flare days, I’ve actually napped in mine with a blanket and a good audiobook.

RV patio mats might not sound like a big deal, but for mobility, they’re a hidden gem. A good-quality rug can level out uneven ground, cut down on dust and mud, and create a safer, slip-resistant surface for walking or rolling. Plus, they make your outdoor setup feel like an actual “living room” instead of just dirt under your feet.

And for my fellow food lovers—adaptive grill tools are a must. I didn’t think flipping burgers could be a challenge until grip weakness turned it into a game of “catch the spatula before it hits the dirt.” Tools with thicker, rubberized handles or ergonomic designs make cooking so much more enjoyable (and less likely to end in burned fingers).

These aren’t just “nice to haves”—they’re part of building a setup that gives you the freedom to say “yes” to more adventures without worrying about what might hold you back. Because the road should be about the marshmallows, the sunsets, and the memories—not the barriers.

Packing for RV life with a rare disease or mobility challenge is part checklist, part art form.

The right prep can mean the difference between a stressful trip and a memory-making adventure. Remember—your health comes first, comfort matters, and joy belongs in every bag you pack. Use the free printable checklist to make sure nothing slips through the cracks. Here’s to safe travels, open roads, and marshmallows by the campfire!

📥 Want to Pack Like a Pro?

Request the Free Printable Packing Checklist for RVers with Rare Diseases & Mobility Challenges at chris@theadvocatevoice.org