TOP 10 TIPS FOR TRAVELING WITH CHRONIC PAIN
Updated: Sep 17, 2020
*Please note any recommendations for products that have a * are all products that I personally use and are not sponsored or have affiliate links. There are no sponsored or affiliated links for any products in this post, but some products I just don't personally use myself but others may find helpful.
1. Carry-on item essentials
I cannot stress this enough: pack your medications in your carry on item. This is incredibly important to do because you do not want to be in a scenario where your luggage is delayed or missing and you are left in another state or country without vital medications (especially ones that can't be filled out of state or especially another country!).
It's also very important (and helpful if you're ever in a tricky situation) when you leave the country or state to bring:
1) A list of your medications with your listed conditions and allergies signed by your doctor(s)
2) List your doctor(s) phone number(s) on the same paper
3) Include your emergency contact numbers on the same paper
Keep this paper in your wallet so it will be easier for paramedics/doctors to treat you in emergency situations, because everything will be in one place. Medical alert bracelets can also be helpful in these emergent situations.
Also, it's important to leave all of your medications in their original bottles as much as possible. Again, exceptions for a few days of pill cases, etc. but even with pill cases I would still bring the bottle(s) so you can show what the pills are for and who prescribes them.
Also remember to either purchase a water bottle when you are past security so you can take your meds, or better yet bring an empty water bottle and fill it up past security to save money (and the environment too)!
I personally recommend Liquid Savvy water bottles* - they're sturdy, keep things cold (or hot) for hours, and hold plenty of liquid, and it's also fairly cheap. After years of experimenting with dozens of water bottles, I can for sure say this one is my favorite.
2. Pack comfortable clothes & shoes
This is really important because you don't want to be on vacation wearing tight clothing that can restrict parts of your body that can exacerbate your pain that much more, especially when you're stuck on a plane for hours at a time in one spot.
I recommend clothes like dresses, jeggings*, leggings*, sport shorts,* flowy shirts* and t-shirts* that aren't restricting and supportive shoes for women. Generally anything that's considered your go-to comfort clothes that you know work for your body type and pain.
For men, loose shirts and shorts, sweatpants or jeans along with tennis shoes and again anything you know is your go-to comfort clothing that works for your body type and pain is perfect. (PSA: I'm not a guy so I know I can't really speak to the experience of guy clothing and what works the best but if anyone would like to share suggestions please contact me and I can add it in!)
3. Stock up on pain relief items & medications along with any additional meds
This includes any pain medications you are prescribed along with anything over the counter and items that have been beneficial for you. Don't forget to speak with your doctor to make sure you won't run out of your pain medications while you're away and be sure to get them filled prior to leaving.
(NOTE: Do not use or take anything without speaking to your doctor or take anything that is not explicitly prescribed to you).
Throughout my travels I have personally brought along items such as a TENS unit*, ice packs*, disposable heating pads*, icy hot patches*, and over the counter medications like Advil*, Tylenol* and Aspirin* and prescription medications.
1. Ice packs: These can be tricky to take on trips because if you don't check your bag and instead try to bring it on your carry on item, it has to be frozen solid through security (which is often hard to accomplish since well, ice melts on your way to the airport!). They do sometimes make exceptions for melted or "slushy" ice packs but it must meet 311 liquid requirements and you have to notify a TSA officer at the checkpoint for inspection, which means you may potentially have to throw it out which can be pricey. If I'm traveling to a destination and I'm not checking any luggage, I often purchase over the counter ice packs at a CVS or equivalent drug store if possible and reuse those during the trip - (they freeze just the same as an ice pack in a freezer and cost less than $10 usually). Even if it's just putting it in a mini fridge, it's better than nothing! If that's not an option though, hotels often have ice machines available.
2. Heating pads: According to the TSA website, electric heating pads are allowed to be checked and put in carry on luggage, however "the final decision rests with the TSA officer on whether the item is allowed through the checkpoint." which could cause potential issues.
I personally brought disposable heating pads* on a carry on item once and had to have my bag searched because the heating parts looked suspicious on the scans. Though, when the guy opened my bag he saw it surrounded by dozens of medications and he immediately was like "you're good no worries, feel better, sorry!" so I think he thought I was dying or something which was a bit hilarious how flustered he got, kinda sad in general but fairly helpful all at once. But take from that what you will.
Bring whatever else you find helpful to relieve your pain and health conditions: a reusable face mask, stretching bands, distraction shows on Netflix for the plane ride when you won't have WiFi, meditation guides or apps like Calm*, books, etc. You get the idea - whatever you know helps you. You know your body best.
4. Minimize strenuous activities or activities that will agitate your pain
If you know certain motions agitate your pain, don't schedule that into your day. Don't plan to do a bike tour of the city if that's not something you can realistically handle even if it's something you know that you'd enjoy.
Don't go on a zipline course if you know that the straps would be too tight on your stomach and hips but you think that "all you have to do is sit."
Don't go white water rafting if again all you think you have to do is sit there when in reality it's a lot of paddling and core strength.
Choose activities you know you can realistically do that you will still enjoy, and will still let you explore a new city, town, and local culture. It may not be the way that you imagined or hoped for or even the way that you used to be able to (and yeah, that fucking sucks - I get that) but that doesn't mean you can't enjoy this new way too!
Try your best to focus on all the awesome things you CAN do and experience and not on what you've "lost" or "can't" do. You're in a place that you likely haven't been before, and many people may never get to say that - cherish it.
5. Make accommodations ahead of time as much as possible
Many airlines allow people to make accommodations when they need assistance with traveling whether this means needing to board early, help with getting through the airport, and more.
Here are links to major airlines with directions for how to get accommodations on your next flight if you need them: Jet Blue, American Airlines, Delta, South West, United, Virgin Atlantic, Norwegian Air and British Airways.
And here is another helpful guide for additional information about accessibility in airports and what you're legally required to have assistance with.
One thing I will say though - I have an invisible chronic pain condition which I understand can be tricky for others to understand and empathize with. I also do not officially have any "identification papers" that say I have a disability. Essentially I wouldn't qualify for SSI disability in my country but I do have a disability that I still get accommodations and assistance with things for. But this can often leave me in that awkward in-between limbo. Like you're disabled but not enough and I feel weird checking the "I have a disability" box on forms, or "I need assistance" boxes, etc. so if you're also in that boat - I feel your struggle.
There was an instance where I was struggling badly to get home during a flare. Barely able to walk. Awkwardly crying and hobbling through the Heathrow airport in London, U.K. and didn't know who or how to ask for what I needed, which was a wheelchair and to not carry my bags. But I thought because I didn't have an actual doctors note on me that I couldn't get that assistance.
The other issue is, I later learned, you have to call ahead to get a wheelchair in most cases - approximately 48 hours or earlier so that option wasn't really available to me at the time anyways. But I did get an accommodation. When I got to my gate, I sat on the floor in front of the gate agent waiting in line which was likely her first clue something was wrong. When I got to the desk, I asked her if I could board early. She looked at me oddly, but after I said, "I'm really not feeling well. I have a chronic pain issue and I just need to sit and not move or carry these bags anymore." She agreed and let me board early. So if you need to board early, you don't necessarily need documentation (like I personally thought you needed at the time), just try to explain the situation as best you can.
One big thing that wound up helping me a ton was getting Global Entry*. This allows you to go through TSA pre-check and skip really long security lines - it's truly a god send because I don't have to stand around for 30 minutes to an hour (or more!). This also lets you breeze through customs.
You can also apply for TSA pre-check which I personally don't know the exact process of, but you also have to get a background check and go in for fingerprinting at an enrollment center just like Global Entry, but look at all of the traveler programs and see what works best for you.
Hotels and hostels (especially abroad) can be really tricky and you often can't know how it's set up until you arrive. For instance, if there's even an elevator.
This is when google is your best friend. When you are searching for places to stay in your destination be sure to include search terms with your destination along with "accessible" and/or "wheelchair accessible." I would also call the hotel or hostel you're looking at as well just in case to make sure it is still accessible because sometimes there is construction going on or the elevator is out - you just never know from a website, so it's always smart to call too.
In March 2018, AirBnb released 21 new filters for travelers with disabilities to make it easier for them to find accessible accommodations. This includes search listings such as "step free entry to rooms, entryways that are wide enough to accommodate a wheelchair, (elevator access, bathtub with shower chair), and more."
I personally have never been on a cruise before, so all of the information below for this section was sourced from the awesome Million Miles Secrets blog post.
"Make sure all the ports of departure are ADA compliant. All US ports are required to be ADA compliant, but that isn’t guaranteed if your cruise makes stops in other countries.
Check with the cruise ship company to see if they need information ahead of time such as prescriptions and doctor’s notes. This would be a good time to make special arrangements for your arrival and disembark, if needed.
If you have a wheelchair, make sure your cabin is wheelchair accessible. Try to book a cabin close to an elevator to make it easier to get around. Look up excursions ahead of time to make special accommodations if necessary – many cruise ship lines have a ratings system for level of accessibility and difficulty.
Many cruise ships cater to passengers with disabilities, with handicap accessible rooms available with roll-in showers, grab bars, and other customization. While some activities can be physically straining, there’s always plenty to do even if you get exhausted" (Million Miles Secrets, 2019).
6. Let friends, family or whomever* you're traveling with know your limitations
One of the most helpful things I did for myself was let my friends and family know how I was feeling ahead of time and what my limitations were so that they were prepared for what we (or at least I) would be up to and I wouldn't have to constantly feel guilty about saying no to doing things.
A helpful analogy a friend and college classmate, Lilly Stairs told me about was something called "Spoon Theory." It was something my parents found especially helpful for understanding why something as simple as going out to dinner one night was just too much for me on a particularly bad day.
Also keep in mind you don't have to do everything together with your family and friends. There can be things that involve more activity for them that they're able to do and you can join them before or after while you go off to rest or do something less strenuous like swimming, etc.
*I say whomever because there are travel groups and study abroad programs where you may not know anyone.
7. Know your limits AND stick to them
PUSHING YOURSELF TOO MUCH
For years, I was so stubborn and pushed myself way too hard. (To be honest, sometimes I still do). But just a few years ago, I would push myself to the point where I definitely made my health worse. I know, I know, I'm an idiot. But at the time, I really didn't have a diagnosis (I mean I technically still don't) but I really didn't then so in that timeline of my life, I was also in a headspace of "There's nothing wrong with you so this is clearly all in your head so you should just push through this. Don't be such a wimp." Again, dumb AF. I most definitely do NOT recommend doing this, but I do want to say that I understand that feeling.
I understand wanting to keep up with everyone else your age because there are always going to be people in our age demographic we feel we should be "living up to" and we all have that feeling of not wanting to feel "left behind."
I understand not wanting to let people down or even make people mad... I even understand not wanting to make family or friends upset about how much you're going through so you pretend everything is fine and push through for them.
I understand feeling weak and useless and guilty because of the money spent on the trip you don't want to waste so you push through.
I understand wanting to have fun and just enjoy yourself and pretend to be normal like everyone else your age (FOR ONCE!) even when it's almost impossible to quiet the pain that's getting louder and louder with every step.
I understand being so dang frustrated with your body not cooperating and wanting to scream in frustration but instead you lash out at the people closest to you - because they're there and too close. And then you feel a million times worse.
There is so much going through your head, and none of it is fun. It's awful to be trapped inside a body that doesn't do or feel like you want it to. It's one of the worst parts of having chronic pain and chronic illnesses. That mental spiral I feel from disappointing my friends and family (even if they don't feel that way!) is truly one of the hardest parts (besides the pain I experience) when I travel.
Quieting that voice in my head was so hard that I truly pushed myself to the brink and had a flare so bad I couldn't feel my right leg (and often still can't - I'm still paying the price for it). At the time, I had to be carried by my classmates through the streets of Skopje, Macedonia and Thessaloniki, Greece. I promise you it's not worth it.
I honestly don't know if anyone else feels like this - maybe it's just me. But if you do feel like this, or ever have, I promise you're not alone in feeling that way.
WHEN YOU CAN'T TRAVEL
Also, don't feel bad if you can't travel or can't travel for a long time either. I know how hard it is and how much it sucks too.
1) Try to do new things in your hometown or city even if it's just trying a new restaurant.
2) Talk to your doctor about your goals and figure out a plan on how to get you there again
3) Patience - this is the hardest part but time takes time. The time will pass anyways, so try to make it as enjoyable as you can.
CANCELING TRIPS OR LEAVING EARLY
Ugh. It happens. It sucks. My god it sucks. The biggest advice here is travel insurance, travel insurance, TRAVEL INSURANCE. I'll say it again: travel insurance. In instances where you aren't healthy enough to travel or you need to get home, it can save you hundreds, if not thousands of dollars and help you with medical bills if needed.
Here is an awesome blog post about travel insurance that goes over everything you need to know about it.
Also, for those who don't know - travel insurance is an excellent idea even for those who aren't chronically ill. It covers situations like cancelled trips, unexpected hospital visits, stolen items, and more.
A situation where travel insurance has personally helped me was when I wasn't feeling well enough to fly back to Boston. I was staying at my parents place in Texas and wasn't up to flying yet. I purchased flight insurance when I had bought my ticket for less than $30, my doctor wrote me a note and after some quick back and forth, boom, my ticket was reimbursed.
Leaving early is seriously crummy and canceling trips is just as awful. It's lousy and that guilt of disappointing people is so real - but try to keep in mind that your health takes priority. Those who truly care about you will want you to prioritize that.
8. Factor in rest before, during and after your trip
When I plan a trip, something I have to think about is rest. Before a trip I try to rest as much as possible at least 2-3 days beforehand. Whether that's going to bed an extra hour or two earlier or spreading out errands and chores a few days before I leave so it's not all last minute and stressful, etc.
During a trip I also make sure to factor in rest too. Like a long lunch, a "siesta" or sleeping in, reading time, etc. Truly it really depends on how I'm feeling because as anyone with a chronic illness and chronic pain knows, everyday is different. Some days are tolerable and some days are really not.
I also try as much as possible to schedule at least a half day or more to rest up before getting back into the rhythm of regular life again, especially if I have work the following day. Traveling is stressful for anyone, but it can especially wreak havoc on chronic pain issues with walking, carrying heavy items, etc. Plan accordingly as best as possible! You don't want to have to take time off for being sick right after a vacation.
9. Make a plan you can realistically handle
Again, factoring in rest is vital if you want to make sure you can stick it out the entire time. How much rest truly depends on the person and their stamina - only you know your body and how much you're able to handle.
For example, I know I'm really only able to handle 1-2 "big" things per day like a meal out and an event with a couple miles of walking total. And that's okay. And it's okay if you have to do less or if you're able to do more.
Sometimes you may need a break though - and that's okay, it may not be what you planned for, but hey, I'm 99.99% positive that nobody in the history of traveling has experienced a trip that is perfectly identical to their itinerary, so you're in good company.
So if you need an unexpected break - take it. Sleep in, take a nap, sit for a long lunch, sit in a park, sit down because you simply need to (in a safe spot). By the way, I feel this isn't talked about a lot, but if you're in a location where it may feel socially odd to be sitting, like in a line for example - something I do when I find it difficult to keep standing is pretend to look for something in my bag or tie my shoe. Or, if it's bad enough I just sit.
Because you know what?
Nobody should have to sacrifice their wellbeing for other people's social comfort or for what someone else perceives to be off social norms. If you're able to minimize your pain from a high 6-7 to a 5-4 or lower just by sitting, DO IT. And ignore what anyone else thinks.
10. Enjoy as much as possible!!!
Try to remember that wherever you are going, you are experiencing it for the very first time and that is such an amazingly rare and beautiful gift that you should take advantage of as much as possible.
There is so much to see, do, and experience. There are people to meet and foods to try - and I truly hope you have the time of your life.
And finally to sum up: take care of yourself and listen to your body, prepare as much as possible, and last but not least, SAVOR IT ALL - you've more than earned it!!
If anyone has any more suggestions or tips please contact me and I will add them underneath this quote image.
Thank you so much for taking the time to read this, it truly means a lot!
So much love.