9 Holiday Travel Tips for the Chronically Ill
I’m a total hermit. Even before I was diagnosed with Ehlers-Danlos syndrome, I have always loved being home. So, when I fly by myself across the country to visit my family, I’m a little anxious. Luckily, I have some experience. There are a few ideas that really stand out to me – helpful reminders to save my energy and prevent ruining my trip before it starts.
1. Ask for help and accept kind offers.
I know my support system often feels helpless, so when I say yes to their offers, it is a win-win situation. I don’t totally exhaust myself doing something unnecessary, and they can take a little control of something that almost always feels so out of their control.
I used to be stubborn… clinging to as much independence as possible. Why? What was I really proving? I do, in fact, need help sometimes. I’m learning to embrace it. Even strangers like to do their part on occasion: holding a door, reaching for a high object on a shelf, asking to lift my carry-on bag into the plane cabinet. Say yes, please, and thank you with a smile! If someone does not offer, ask anyway. The worst that can happen is the person says no and you move on.
2. Come prepared.
Really think ahead of anything that may come in handy if you by chance flare during the trip. Make a checklist. Pack early. Plan ahead as much as possible.
My basics to bring on my travels include: medications, braces/wraps/slings, compression socks, super comfy clothes, KT tape, heat pads (electric and those adhesive ones when in-transit), travel pillows (one to sit on, one for my neck, and one for my back), mobility aids (my cane and wheelchair), and anything else that you use regularly… Better safe than sorry.
3. Know the services that airports have available.
Airports have ADA services, and you should absolutely use them. I’ve found that the staff tends to be awesome and accommodating. I have had great experiences. One of the most important resources I used at airports is the wheelchair service. I have my own personal wheelchair now, but before that, I quickly realized I could not handle the insane amount of walking required in airports. When you check in for your ticket, you can ask to borrow a wheelchair and an aid to push you – for free! (You should set this up before arriving, if possible – I added on the service when I bought my tickets online.) They will take care of your bags and get you all the way to the waiting area for your flight. Show up earlier than usual to use this service. Also, if you can afford it, the staff is allowed to accept tips.
Some flights allow one passenger to bring a personal wheelchair on the flight as carry-on in the cabin. You need to inform the flight attendant as soon as you check into the waiting area to ask if the service is available and you should bring wheelchair instructions for how to fold/handle your chair. I’m also in the habit of printing off the airline’s rules on these matters, in case a staff person is not informed of the policy.
4. Choose your seat wisely.
You know your condition… and how close you need to be to the restroom. If they give you the option to select your seat when purchasing tickets, put some thought into the spot that will be best for you. Perhaps it would be helpful to have the window seat, in order to have a wall to lean against. Or, if you know you will have to get up many times to go to the restroom and want it to be as easy as possible – not needing to squeak through the tiny space between seats, consider the aisle seat.
Take advantage of early-boarding. I used to feel like I wasn’t disabled enough for this… and would proceed to torture myself waiting in a long line of passengers. It’s not worth it. Obviously, if you can afford first-class seats, that’s your most comfortable option, since there tends to be more leg room, easier bathroom access, more snacks/drinks, but I know that’s not always financially possible.
5. Living away from home.
Try to make plans ahead a time to know you will be well taken care of. This really depends on whether you are staying in a hotel or a friend/relative’s home.
Consider whether a room on the first floor will benefit you. I know with my wheelchair, if I can avoid elevators, I absolutely will. Or, if you are on a higher floor, think about the distance to the elevator, which can cut down on the amount of walking. Most hotels will easily accommodate you on these issues. You should look into the hotel’s amenities online before booking. You could find a hotel that has a pool or hot tub help your pain management/physical therapy. Look for a hotel that has a free shuttle to the airport or a hotel with a restaurant on-site (even room service) in case you’re having a really bad day and are unsure if you can leave.
Staying at someone else’s house:
Chances are your host cares about you being comfortable guest and is aware of your illness before inviting you. Ask where you will be sleeping and plan accordingly. You may need to ask for extra pillows or for the host to place your food on a certain shelf. But, also keep in mind there’s only so much your host can do. Being away from home can be hard. Keep in mind that having a guest stay at your house is stressful though, too.
Another thing to consider is what food is available. You may ask your host for some specific items or it might just be easier for you to go with them to the grocery store soon after arriving. Chances are they are already planning on buying food for your trip, so they probably won’t mind if you add a couple special items to that list. I know a lot of chronic illness patients have very special diets, but there comes a point where we kind of have to take care of things ourselves sometimes, especially if your diet has very specific needs that are easy to mix up.
6. Don’t plan too much.
Keep your trip a bit flexible. Traveling is special, and I know we want to fit in every little thing. That’s just not possible – you’ll probably wear yourself out, maybe starting to flare in the process. I would try to avoid having a plan every day, if possible. Plan for off-days during your trip reserved for relaxation. That doesn’t mean you have to sit around bored doing nothing. Maybe have a day to do a puzzle or play games with your family, low-energy, easy activities. Those can be the best days. Know and accept your limits.
7. Be ready to educate.
When you are around people you don’t see often, they may be surprised if your condition has worsened or just have a lot of questions. I usually only see my family once a year. I could walk without any assistance last visit; this year I need to use a wheelchair some days. Instead of letting this come as a shock and explaining myself a million times, I tried to prevent some questions ahead of time by addressing it on social media before my trip. I wrote that with my limited mobility, I won’t be able to see everyone, friends may need to come to me, I may need to cancel plans, and I’ll be using a wheelchair sometimes. I try to be fairly open about my illness, but at the same time, I really don’t want it to be the focus of my trip.
8. Make time for yourself.
If you are like me, I’m used to quite a bit of me-time. Self-care is a crucial part of my day. If you need some time, take it without regret or apology. You do not need permission for a break. It will make your trip so much better if you follow your usual steps, trying to be as preventative as possible. It may seem like you are “wasting” precious time that could be spent on travel activities, especially if the self-care requires you to be solo, but you could be setting yourself up for failure if you just try to keep pushing through. Follow your instincts. Trust your body. Sit down. Take naps. Go to bed early. Do whatever you need to make the best of your trip by taking care of yourself.
Holidays are difficult sometimes. I do a lot of reflection around this time of year, which makes it very easy to focus on how much my life has changed for the worse, on how much I can’t do anymore. Your vacation is not a good time for a pity-party. Think about what you can still do (easier said than done…I know). Find things to be grateful for. Smile a lot. Have fun, despite your illness. Take a bunch of photos (so you can remember the good times regardless of brain fog). Create some special memories that will carry you through to your next vacation. Celebrate all the love and support that brought you to your destination in the first place.
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