Last night, my partner Charles and I returned from a 15-night road trip from Pennsylvania to Arizona and back. I’ve had some epic adventures over the years traveling with my late doggo, Amica, and we got along fabulously, but I’ve not had great experiences traveling with another human. This time I genuinely believed would be different, due to having an incredible human. And it indeed turned out to be Amica-level fabulous!
Mid-trip, I asked Charles some pointed questions about his experience traveling with someone who has chronic pain and chronic illness, so that he might share some insight and tips that can encourage and help other couples like us. Here’s what we discussed.
Me: What are some good things for me to tell you ahead of time to help you plan or prepare for a trip?
Charles: It’s good for me to know what your most likely difficulties are going to be. Then, what is the best response, and what’s the queue for that? Is there a quick phrase we can use if you need a restroom immediately? Another thing that’s good for me to know ahead of time is how many hours you can comfortably sit in the car.
Me: What adjustments have you had to make to how you normally travel?
Charles: Certainly more frequent breaks during driving, as well as additional time at breaks to allow for more moving around, stretching, and just not sitting. I had to be mindful of how much luggage I bring so we can make sure there is space in the back seat for you to lie down. We definitely need to make sure we take a vehicle that you’re comfortable in. There are certain things we’re just not going to do, like go sit in a theater for a couple hours. Overall, just keeping in mind what’s uncomfortable for you or what you’re OK with.
Me: Is there something that’s been surprisingly cool and pleasant about traveling with someone who has disabilities?
Charles: I have found this to be very rewarding, honestly, because I know it’s difficult for you, and I think you’ve not had great experiences traveling with people in the past. I’ve really enjoyed being mindful of that and making sure you have as good of a time as you can.
Planning recreation time and things to do in the room has been a lot of fun. I’ve really enjoyed shopping for small LEGO® kits and building together in the room as well as learning new card games. It’s so great to spend time together without having to go out. It’s not the constant on-the-go vacation. The need for a little bit more rest time has definitely made this less stressful. I love how relaxing this vacation has been.
Me: How has traveling together helped you to better understand my conditions?
Charles: When we’re at home, it’s less front and center, because it’s just easier to get comfortable and adjust. Home is set up to most efficiently manage your symptoms and conditions. When we’re anywhere else, it’s like nothing is ideal. I’ve definitely had to see you suffer more than I have at home. I’ve now gotten to experience some of the limitations along with you. I mean, you told me, but that’s different than being there. Seeing you have to adapt to your surroundings, instead of having your surroundings adapted to you has been really eye opening.
Me: What advice do you have for others who are traveling with partners who have disabilities?
Charles: Be flexible. Be prepared for changes. Be patient. Really the big thing is to just remember that the other person’s experience is different than what you’re experiencing. You may be perfectly fine sitting, but the other person isn’t, or whatever. Just try to put yourself in their shoes and imagine how they’re feeling, and anticipate what they may need when possible.
If your partner gets upset in any way, take a moment, take a deep breath, keep in mind that if your partner is frustrated it’s probably not about you, but about what they’re feeling or dealing with. Also understand that it’s not that they’re having a bad time, or a bad trip, but just a bad moment, like a bad car ride. You need to not take that personally.
One other thing is to just do what they’re asking you to do, or not do. You might think you have a better idea, but they know best what they need.