Traveling with Chronic Illness/RA Part 2: 20 Helpful Tips
Nothing makes traveling with chronic illness / RA easy
I’ve traveled all my life. As I explained in yesterday’s blog, Traveling with Chronic Illness / RA Part 1, it is different to travel with Rheumatoid Arthritis. Here are a few of the tips that I’ve learned over the last few years from traveling and talking with other friends who do. We can try to make it easier on ourselves and at least be prepared.
Travel with chronic illness tips list
- Relax and lower expectations. You might not make it as far as you planned if you are driving. You might not get to see everyone or go everywhere on your list. It’s okay to settle for less.
- Ask for help and be patient. If you’re like me, even if you ask for help, you try to manage as much as possible on your own. If you can bring something to read, you can be more patient when you are waiting for help to respond.
- Be open about your limitations. Tell your companions and your hosts what you are comfortable doing. Let them know when you need to stop.
- Take advantage of assistance such as skycaps or porters.
- Use a wheelchair or scooter in large airports, museums, zoos, or shopping centers. Often you can borrow or reserve one even if you do not use one on a regular basis. Remember, you won’t just be walking long distances; you may also be waiting in long lines.
- Provide for good rest. Do you need special pillows or lightweight blankets? Has your doctor prescribed sleeping pills? Personally, I use a featherbed and next time I travel, I’m packing a small one into a vacuum bag.
- Pack one or two small light bags that you can carry yourself in case you have to. Include medication you may need while en route and whatever else would be critical in case you are separated from your other luggage.
- Medications should be in containers with the pharmacy labels still attached. In many places, it is illegal to carry them without the original labeled container. Get new prescriptions or refills done so that you have enough and you won’t have to bother with refills on the road.
- Break up the schedule. Maybe that means visiting on some days and resting on the days in between. Or changing to a different seat in a car after stopping to stretch at a rest stop.
- Ask your doctor about prescribing prednisone or extra medications for sleep or pain while traveling to make you more comfortable during the extra physical stress.
- Find a small travel pillow that you can use to make seats more comfortable or rest your elbows on. You can usually roll them up and poke them into your bag.
- Bring the phone numbers of your doctors and pharmacists in case you have a question or an emergency.
- Talk with someone who has traveled to that destination before to ask about situations you may not have considered.
- Carry a packaged snack or mini meal to be used to take medicine.
- Bring a small reusable water bottle. If flying, bring it empty. You can refill as needed.
- Don’t stress shoulders or wrists carrying a handbag. Get a cross body type handbag, backpack or waist pack.
- Bring insurance information or identification. If you do not have medical insurance that will cover you where you are traveling, you can buy special insurance just for the trip.
- Get a medical alert tag or carry a card with emergency physician contact, current medications, and medical diagnoses.
- Wear shoes that slip off easily so you can give your feet a break every chance you get.
- Show this list to your significant other or travel companions.
What is your best tip for travel with Rheumatoid Arthritis?
More help for travel with Chronic Illness
- John’s Hopkins’ Health Alerts: Travel Tips with Chronic Illness
- Net Doctor on Traveling with Chronic Diseases
Recommended reading:
- Traveling with Chronic Illness / RA, part 1
- Book review: What to Do When the Doctor Says Its Rheumatoid Arthritis
- Rheumatoid Arthritis Disability Makes Things Difficult
- Dealing with Rheumatoid Arthritis and Housework
If you’re travelling by plane, there is usually a call for people who need extra time or assistance to board – use it. You might ‘look normal’ and get a few mean stares from people who don’t know you’re ill, but to get on board and stow your overhead luggage without the stress of impatient fellow passengers is really worth it and a much better start to the trip.
Good point, Rebecca. I think it’s hard at first to give ourselves permission to be the one to get that assistance – for just the reason you state.
I have learned the hard way to travel with my cane, even when I am doing okay when I start the travel. Not only does it help with the mean looks and rude comments when I have to request extra time to board, but after traveling and doing more than I usually do at home, I have found that I often do need the cane on the trip home. I have learned to swallow my pride and be prepared.
Don’t forget the charger for the scooter. Did this in Spain and had to get son to parcel it up and emergency courior it from England to Spain.
If you are travelling abroad, plan any vaccines in plenty of time, some medication’s you will have to be stopped for a few months so you can have the injection.
Don’t forget your support straps.
Take any adapted or easy grip cutlery/crocery/stationaty with you and make sure the waiter doesn’t take them away when you have finished your meal. Also any dressing aids.
If going to a forign country get a translation of your condition and medication printed out and put a copy in the car, your handbag, your purse and let your traveling companions have a copy as well. (I have found that most schools will have a teacher who is willing to do a translation for you).
Oopa, sorry about the spelling mistakes.
Thanks, Julie. Great. 🙂
Great article. I hadn’t traveled much since the onset of my RA. In May of this year my husband and I had a 7 hour flight to Halifax, Canada. I came home with extremely painful outer thighs, from my hips almost reaching my knees. I couldn’t bear to even have it touched. My rheumatologist diagnosed me with Trochanteric Bursitis, or bursitis of the hips. He offered to inject them with steroids but I thought I’d wait and see if they improved. Here it is July and they are still painful, every car trip exacerbates them. I’ll be going in for my injections soon. Doc said it is a non-joint manifestation of RA to develop bursitis and that it is so important to get up and walk around and take those car stops. Unfortunately on the plane I couldn’t do that.
Jamie, I hope the injections help. So, he said we could help prevent the bursitis if we could move around once in a while? That’s very interesting. I often feel like I MUST change positions b/c of pain – I wonder if that helps protect from something like that?
I had a bad experience a few months ago in the Dallas airport. I had a wheelchair reserved, as did two others on my flight. Arriving, there had been some “communication error” between the airport and airplane and the requested wheelchairs were not there – not one.
I was patient, let the other two folks get theirs, and then found that there wasn’t an attendant to take the third wheelchair. My husband can do it, I said, from the bottom of the ramp. The boarding agent (by now they were loading a new plane of passengers) refused to let him help me as it was somehow a security problem to let him down the ramp.
But what I really don’t get is, why can’t we get scooters at airports? I don’t need to have an attendant if I have a scooter. What’s so hard about that? If Walmart and Safeway and Target and Costco and Home Depot trust their customers – who they don’t even know at all – surely we could check out a scooter for the airport when presenting our airline ticket and ID.
Can anyone offer a good reason why it should only be wheelchairs at airports? Does anyone know of any airports that do have scooters? Other related experience? I’d really like to hear about it. Thanks!
I should also add that once the attendant FINALLY arrived, I was told I had to wear the seatbelt or else they wouldn’t push me. Now that was really humiliating, unnecessary, and had to argue for operations supervisor because apparently they fire folks for not using the seatbelts.
Why do I have to give up so much of my independence just to ride the darn plane? Some barriers are difficult to overcome and I do get that, but I sure don’t understand having such a restrictive environment for mobility-impaired passengers with no choices whatsoever.
Again, please share your experiences.
Mary, I can’t wait to hear why there are no scooters at airports. It is likely cost. The seatbelt thing is just crazy. 😛
I have a good idea why there are no scooters and why you must have an attendant. If someone used a scooter they could easily hide something in it before they go through the metal detectors (there are a lot of little nooks on those things) the scooters would have to be manually inspected every time because they are metal and of course would set off the alarm and can’t fit through the x-rays. It would take more time and man power to check them all, plus there is added risk as to what would get by them. With having an attendant with the wheel chair there is less chance of someone being able to hide something in them.
Thats a very good point, Tara!
I also wonder about crowd safety or panic. Airports are so crowded. I was injured by a wheelchair last time I was in the airport. If it had been a scooter, it would have been much worse.
Bring small ziploc bags to make an instant ice pack for when you have overdone it. Most fast food restaurants, convenience stores and hotels are really great about giving out a little bit of ice.
Good idea! 🙂
I always have a quick talk with the people I’m traveling with to let them know that they are going to need to be more patient with me. I move slowly and that is how it has to be. I tell them to just relax and I won’t be far behind. I’ve found that people usually enjoy the reminder to slow down and enjoy things more.
thanks for all the tips!
robin
Thank you for posting this perfect timing too I am leaving for a car trip soon and am very worried about pain etc from sitting for long periods. I am going without my hubby who is the one who truly understands my needs etc. These ideas are fantastic…thank you everyone for adding their own ideas too.
I have a tip to add when traveling with a cooler dry ice is a great idea there is no soggy water mess to deal with. Plus it seems to last longer then regular ice.
Hi Tara,
I’m so glad you have someone who understands your needs. That is amazing.
I hope your trip is fun. I never bought dry ice – that’s a good idea.
NOTE: There are some great tips by a reader here on another post – click here.
Also on PART 1 of this Travel post here.
I don’t know if it’s been mentioned yet, but if you are flying, you can request early boarding as a person with a disability. You do not need documentation, they cannot even ask your disability,though you will get some crazy and nasty looks from airport personnel and fellow passengers. You request this at the gate. My family is far enough that I need to fly, and the extra time to get down the ramp, plus not having to stand and wait is wonderful, as is the fact that I have more time to get settled in my seat without straining something. I hope this others as we all get ready to travel this season.
Rebecca
That’s a good one Rebecca. Yes, I’ve done that & the airlines are usually very good with helping. I also did get one wiseguy passenger who didnt think I deserved the help. Also, I’ve been very surprised how much airports vary about whether they’ll help push the wheelchair. Just depends.
Thank you Kelly for this blog. I am flying to UK on Wednesday and alot of your suggestions are hopefully going to make my trip more enjoyable or even downright possible.
I’d like to add a couple things. First – a night light. If you aren’t that mobile and in an unfamiliar hotel room, you have to be able to find the bathroom without turning on all the lights and driving your spouse nuts. I swear it’s a big comfort to have a little light plugged in. My other item is a back support in the car can help. I have a mesh and metal thing that only cost about $10 and it’s very helpful,
Thank you for all of this – I have had RA for 9.5 years, but it’s only in the last 8 months that it has become horrific. I just had my first vacation since this extended, terrible flair. It was a real wake up call and very frustrating. Although I did still manage to enjoy the beautiful island and time away, it just “wasn’t the same.” Having your list handy for my next trip will surely be helpful – and also comforting. It’s the first 3 items on your list that were the hardest for me – knowing I am in good company will surely be helpful on my next trip.
I always call the airline ahead of time and request assistance while traveling. I discovered that in Frankfort there is a special lounge for disabled travelers where those in transit can wait, rest, have a snack/drink and wait for the attendant.
Also bring along about an extra week of prescription meds in case of travel delays (such as when the volcano explosion happened). Then you don’t have to find a place for an emergency refill if you are delayed.
Sitting in an aisle seat is also good so you don’t have to climb over others to get to the restroom. It’s also easier to get assistance if sitting on the aisle.
I travel to eastern Europe every year.
Thank you. Good ones.
I’ ve been traveling for years all over the US, Europe, Middle East and Africa. Going slow seems to be the trick, asking for first level, or close to the elevator rooms all seem to help. Most of my airport experiences are bad, but sometimes they let me board early. Sometimes if you travel with a cane they will let you jump to the head of the line at security. I practically gave up on wheelchairs since rarely had an attendant and if I did, they went slower than me walking…which is difficult to do. I do get scooters at amusement parks. There is a cost, but I get to jump lines so helpful and worth it. I have an upcoming 22 hour plane trip (each way) I am in panic about. It is for work and I cannot control the seat choice and cannot afford an upgrade. I struggle with 10 hours, let alone 22. I hate drugging up, but think I will have to.
Denise, I’m in the same boat. I must travel across the US to see a failing sister. I have several connections to make. See my post below yours. Have you any thing further to add or suggest? Have you heard from anyone?
I have very severe spine arthritis among other issues.I am not yet in a wheel chair. I get around with a cane. I absolutely MUST fly across the US soon and make several plane changes. I am traveling VERY light & not checking luggage. I don’t know if I can walk the entire length of the airport with my tiny bag (it has wheels), a purse and my cane. How do I get wheelchair assistance if I can’t walk that far. How do I get my bag into the overhead? I know I can arrive very early and avoid standing for a long time in a crowded security line. Once I’m in the secure section do I tell the lady at the desk that I need help or do I have to pre register for this and do I have to show some proof.
Donia,
call the airline ahead of time & request a wheelchair. then when you check in, remind them & they will go get it. They should provide someone to push the wheelchair if you are alone. Then when the plane lands they will provide one on the other end. Remind the flight attendent if they dont.
Last time I travelled for Christmas I bought the presents online and had them wrapped and delivered to our destination. I also FedExed a box of essentials just in case something went wrong with the luggage. It was expensive but so worth it not to have to carry it all with me
great idea!
I Am travelling from San Francisco to Kauai, 12 weeks diagnosed w/ RA. I’ve been on mtx that entire time … thinking of wearing a face mask for airport time and flight time, to discourage any airborne illness. What do you think? Thanks
Troy, I hope your trip goes well. I read somewhere that masks work better if the sick persons where them, but that won’t likely happen. I’d be careful what I touch & wash as often as possible though.
I called ahead to United and printed a special card for security to alert them of “special needs” this is on the web site and it will guide you through the process. Also UNITED gives preference to their disabled flyers. This means a seat in the bulkhead and boarding ahead of First Class. Check out your favorite carrier’s perk’s. No handicap ID?, try a DR’s note. :}
I do too. Thanks Naomy! Can’t believe I left that out today. (It may be in the other travel tips post) You can be listed permanently as a disabled passenger with an airline, then board separately our sit in front if you need.
This is going to be a bit long sorry.
I hope to travel from Ldn Gatwick to Las Vegas in March. I am newly diagnosed RA, having been in excrutiating pain all over my body throughout 2013 which progressively worsened until Jan 2014 when I could not function without assistance. I am only in my 3rd week of mtx but my consultant is hopeful that she will have me under control by then. Already I feel 80% better. My problem? Husband. He fears that after a week away I will end up as before. I have googled a multitude of websites, read as much as possible on RA and how to live with/ manage it. This site is SO very helpful – thanks to you all! My question is:- What hints or tips regarding arrival/ passport control ( last visit we queued over 2 hrs!!!! Bad experience.) and managing while there? I have to convince him! This is my short term goal – to be well enough to go AND stay well!
Any info/experience/suggestions/sources for travel to Thailand—food/water/MEDS/and especially required vaccinations? I am going in a year for my son’s wedding, and would love to learn from others’ experience how to cope once we get there. Also, I do fine on short hops within the States, but that transcontinental flight is Loooong! Would appreciate any input. Thanks!
Great ideas about traveling with a chronic illness. I just returned from a 5 day cruise with 18 hour a day music (rock and roll, blues, jazz, etc.) I had such a great time but my feet, ankles and legs became horribly swollen. On the 5th day I could barely walk due to foot, ankle and knee pain. My hands were so swollen and cramped I could barely use them. I had taken my Enbrel before leaving and took Ibuprofen on the trip but I experienced travel stress anyway! Any thoughts?
Just diagnosed 2days ago and already thinking ahead to our yearly trip to Aruba, thanks for the tips!