How To Travel With A Chronic Illness, According To 18 People Who Do It Regularly
Going on vacation, or even getting out of town on business, can be a necessary break from everyday life. But traveling to and from a destination and dealing with unexpected changes can be stressful. Flight delays, missed connections, lost luggage, and hotel reservation issues can all put a huge damper on a trip. For people who live with chronic illness, traveling means having to worry about these common issues on top of issues like inaccessibility, ableism, and health risks.
"The phrase, 'I need a vacation from my vacation' is very true. ... The fact that you have to plan in advance to take care of many things makes a vacation an anxiety-provoking event for many," Dr. Indra Cidambi, a psychiatrist and medical director at Center for Network Therapy, tells Bustle.
As someone who has attended many cross-country work conferences myself, I can say being disabled and traveling is not impossible, but it's not always an easy feat. Some companies have tried to remedy the discrimination that the disability community often faces when it comes to travel. On July 3, Airbnb released new guidelines that require hosts to list clearer information about the accommodations they are able to provide, and photos of their listing's "accessibility features." Yet, as Ace Ratcliff wrote for HuffPost, travel can be a nightmarish experience for people living with a chronic illness.
"The inaccessibility and ableism that plagues air travel is a reflection of the ableism everywhere else in our society. Back when I traveled as a nondisabled person, I didn’t run into any of the issues I now regularly experience as a disabled traveler," they wrote.
Simply put, there's a long way to go before globetrotting, or simply flying two states away, is more accessible, and the onus should not be all on disabled people to find the solutions. Yet, people in the disability community have come up with creative ways to make taking a trip much easier. Here are tips for traveling from 18 women and nonbinary folks living with chronic illnesses.
1. Glides, 24
"If you’re like me and you’ve got really bad joint pain, and pain in your muscles, you’ll need to know exactly where you’ll be visiting, and the distance between the places so you’re not moving so much that you’re aggravating your symptoms," says Glides. They add that remaining hydrated, well-rested, moisturized, and bring along a medical mask has been key to staying healthier while traveling.
2. Julia, 21
"As a rare disease patient — I have vasculitis — I always try to see if there are specialists in the area that I’m traveling to in case I have a severe flare, and need urgent medical attention. I also try to build in a day of rest after I get home after to recoup after traveling, as I often feel extremely fatigued," Julia explains.
3. Sararosa, 21
Sararosa says that, "As someone with multiple chronic illnesses, I notice that flying tends to exacerbate some of them — especially when it comes to chronic pain. [...] I try not to beat myself up if I get sick, or need rest while traveling."
"I also try to [...] come to my destination prepared with a list of restaurants that can deal with my multiple allergies."
4. Amanda, 45
"I have sensory processing issues, anxiety, and autoimmune issues. I'm often overwhelmed by loud noise (and have trouble with auditory discrimination), am bothered by food and clothing textures, and experience joint pain and body temperature changes when I'm stressed and anxious," Amanda says. "My company, Understood, keeps a weighted blanket at the office for me, so when I travel from home to the office, I can bring it the hotel to help me sleep. ... I also have a noise machine app on my phone, and foam ear plugs in every travel bag."
Further, she explains that she wears an "I'm not a hugger" button on her lanyard to avoid some anxiety and stress at work conferences.
5. Sophia, 26
For Sophia, successfully traveling with a chronic illness comes down to two main things: Allowing for a few extra hours everyday on vacation to recover to avoid flareups, and not sacrificing their health for an activity. "I don't do everything when traveling, and I have to consciously be aware of my limitations to be OK with that," they say.
6. Kat, 29
Kat explains that, "When the trips are necessary for work, I rely really heavily on medications, and I talk to the flight staff. I tell them that I'm in an immense amount of pain and will be taking my medicine, but it knocks me out, so I'll need help when the flight lands to get to my next gate."
She also prepares by bringing along noise-cancelling headphones, an eye mask, and a bottle of essential oils to block out smells on the plane. In some cases, Kat explains she will ask to switch seats with other passengers if she is placed by someone who is wearing a strong perfume or cologne.
7. Alexandra, 21
"I have OCD and anxiety, so it is very difficult to adjust to a new routine. When traveling, I make sure to remind myself to live in the moment, and enjoy the adventure," Alexandra says. "In addition, I make sure to stay on top of my medication like I would during a normal day to maintain my routine and mental health when I am away from home."
8. Ariel, 27
“When traveling with a chronic illness, the most important thing is to do your research ahead of time, and make sure that you know just about everything about where you’re traveling. Look up menus to potential restaurants to make sure they accommodate your dietary needs, check to see where the nearest urgent care clinic or hospital is located, make sure your hotel or Airbnb is ADA compliant, and more," Ariel says. "It’s all about being prepared, and even when you pack, make sure you have extra medication, your mobility aids, [and] maybe even a laminated sheet of your medical information. When you’ve got health issues, and you’re going on a trip, you have to not only consider plans A and B, but all the way through Z.”
9. Em, 40
Em says that in order to travel, they've found it's most important to "have someone with you who understands your needs and is willing to do the work to support you," and to "have lot of money to purchase accessibility." For them, this has meant setting aside extra funds to buy direct flights, upgrade airline seats, purchase early boarding, and to pay for private transportation.
"Even with all this, I'm often in much more pain on trips than not. Along with this I'm transfemme, so safety is a worry at every single step — but, I am white, and that privilege offers me fewer confrontations and challenges," they say.
"Certain airlines will give you the first row (after first class) to sit in. When booking, call [the airline], and inform them you’re disabled; if booking online make sure you tick the boxes for special needs/wheelchair assistance. When you arrive, you get brought to the front of lines, in addition to boarding first," says Tee.
Moreover, she says, "If you can afford it, look into scooter rentals so you don’t have to do a lot of walking. I highly recommend Cloud of Goods."
11. Lorraine, 30
As someone living with celiac disease, Hashimoto’s thyroiditis, and a benign heart arrhythmia, Lorraine says that travel can be nerve-wracking experience — even when she plans the details out ahead of time. However, she still takes trips on occasion for work, and goes on a backpacking trip annually.
"I make sure I have all my medicines packed in my carry-on bag, just in case I have a heart incident while flying. I’ve also started bringing freeze-dried camping food with me no matter where I’m going, because it’s one of the safest ways for me to eat without worrying about getting gluten cross-contamination at a restaurant," she says. "It’s a huge privilege to be able to travel, but it can also be a challenge."
12. Kay, 37
"I travel for work when I tour, sometimes as much as four to six cities a month. Intense travel mode means exposure to chemicals, and highly scented places (incessantly perfumed passengers, ugh), so I bring a filtered mask in my pocket, and a spare in my carry-on bag to defend myself against asthma and migraine flareups," Kay says. They also bring along their medications, equipment, and a "sick kit" in their carry-on bag, which contains items such as cough drops, aloe, ginger candies, salves, ice packs, and more.
"[Going through] TSA is a trash fire and usually, a horrid experience as a cane user and part-time wheelchair user — especially as a transgender and nonbinary person — so I usually have two to three accomplices I can check in with as I travel to vent, or strategize hard experiences with," Kay says. "I also carry a small list of blurbs I say when I am in a public binary gendered bathroom in case of verbal assault, or gender policing in towns or cities where I am unfamiliar."
13. Elizabeth, 38
Elizabeth says after trying many mobility options she found the eFOLDi — a lightweight scooter, chair, and suitcase all in one — that has made travel more accessible. "[It] folds really small, can go over uneven ground, and is easy to fly with; I can even drive myself up the gate, and then check it," she explains.
Moreover, she says, "I find icing sore muscles on the road is a must. The simplest way is to get a non-insulated metal water bottle with a wide mouth big enough to fit ice. The metal bottle gets really cold fast, and is easy to carry when not full."
14. Claire, 35
"I have had to relearn how to travel since developing chronic pain. My biggest tip is to be patient with yourself, and try different approaches. ... I prioritize the things I most want to do, and plan for some rest, so it's not disappointing if I need downtime," Claire says, adding that traveling with a trusted person can help alleviate some of the stress that comes along with taking a trip. "Though I miss being able to drive myself on epic long-haul road trips around the Midwest, train travel has treated me very well, since it is spacious compared to a bus or plane, and I can get up and walk around on the train."
15. Heather, 30
Heather says, "The most important thing to know about traveling with a disability is that there is no such thing as being over-prepared, or over-educated. If you need an accessible hotel room, book it online, and then call the hotel to confirm that they received the guaranteed request."
She adds that "if you're flying, know that you're entitled to bring as many pieces of medical or assistive items with you, both as checked and carry-on luggage, without an extra charge." Heather recently wrote a blog post with more helpful tips on flying as a wheelchair user.
16. Valerie, 29
"My chronic illnesses are invisible, so I often get grilled about needed accommodations by staff or other passengers, unfortunately, so be prepared to stand up for yourself and your needs, just in case," Valerie says. "If applicable to your needs, contact the service your traveling on ahead of time, and make sure you've booked in for ADA accommodations — whether that means making sure you're seated in the disabled seats on Amtrak, or have booked a wheelchair to take you from check-in to the gate at the airport. If someone tries to deny you accommodations, remind them that they're breaking the law, and take their name down to speak to their superiors."
17. Jenn, 52
Jenn says that, along with pacing herself, she makes sure to always check her prescriptions two to three weeks in advance before traveling to avoid any issues.
18. Sarah, 29
“As we all know, our buddy endometriosis gives no warning as to when it’s going to flare up, so whenever I travel, I try to be as prepared as I can," says Sarah, who always carries her heating pad, and medication for gas and bloating when she's on-the-go.
Moreover, she adds that also bringing along a personal TENs unit has been "life-saver" while she's traveling when dealing with endometriosis flareups. "I was first introduced to the tens unit during pelvic floor therapy, and it has helped me a lot with pain management. It doesn’t get rid of the pain completely, but helps take the edge off."
Traveling with a chronic illness or pain is not always easy — especially while there's a lack of accessible and affordable options for people living with chronic illness. These tips from people who travel with chronic illness can help make your excursions a little easier.