Planning a Family Trip with Chronic Illness and Disability: The Hidden Work and Uncertainties

Stunning cherry blossom trees at a popular park in Tokyo during our last trip several years ago.

It’s been a stressful past few months, full of hoops I’ve had to jump through to make it possible for my disabled husband with ME/CFS to join our family spring break vacation.

I planned this trip to Japan to celebrate several milestones: our oldest son’s high school graduation, our younger son’s birthday, and mine too. It felt especially meaningful since we couldn’t go last year due to my husband’s worsening debilitating symptoms—unrelenting pain, depleting fatigue, and other health challenges.

This year, I asked my husband if he wanted to try again. Spring break alignment like this won’t happen again for years due to our sons’ ages. He ultimately said “Let’s go for it,” and we took a leap of faith. I booked our flights, knowing full well that with ME/CFS, it was unpredictable what his health condition would be like a few months later. 

Behind the Scenes Logistics to Plan a Vacation with Disability Needs

I threw myself into planning: booking four Airbnbs and a ryokan in our favorite cities from a past trip several years ago. Each place had to be carefully chosen—no stairs, quiet neighborhoods, near public transportation, and comfortable enough for someone who’d spend most of his time resting in bed.

When we travel, my husband joins us for lunch and dinner and maybe a short, low-key outing in mid-afternoon each day, with long stretches of rest in between. It’s not typical sightseeing, but it’s our version of traveling together. While it’s limited, it allows us to share family experiences. 

Next came the airline logistics. I scoured the websites of United Airlines and its Japanese partner for their disability and medical equipment policies. That’s when I found out my husband’s existing travel scooter and oxygen concentrator didn’t meet their requirements. We needed to buy new ones—expensive and not covered by insurance.

It gave us pause. But I reminded my husband: this isn’t just for one trip—it’s an investment in his ability to participate in life more actively for years to come. That shift in perspective brought a little light and hope.

Complex Illness Uncertainties and Planning Two Versions of the Same Trip

Then came the emotional curveball: one night over dinner, my husband said he might not be well enough to come. Just in case, he told us to be prepared to go without him.

Dead silence. The boys and I let that reality sink in.

I realized I had to plan for two different scenarios. I kept planning as if he was coming, and created a full backup plan in case he stayed home. That meant setting up meal and grocery deliveries, arranging check-ins with friends, organizing medications, and figuring out when we’d call him daily from across the world.

I also had to do the internal work of not clinging too tightly to my desired outcome. My Zen teachers have emphasized the lesson of non-attachment, which I share with caregivers I coach. Here is a situation where I really needed to practice non-attachment. Of course I wanted him to come with us. But I also didn’t want him to suffer a ME/CFS crash due to over-exertion and worsen his illness. And if I got too attached to the outcome I wanted, I might be bitterly disappointed. Instead, I focused on accepting the reality of the situation—hoping he could join, while mentally preparing myself to enjoy the trip with just the boys if needed.

New Treatments, New Complications

Over the past month, my husband started taking antibiotics and supplements for SIBO (Small Intestinal Bacterial Overgrowth). While getting rid of SIBO would definitely help him feel better, there’s always a risk of treatment side effects. After a few weeks, we realized one new supplement was making his muscle pain worse. We adjusted course, again. Finally, just last week, 8 days before our trip, he decided: he was coming with us.

We were thrilled and relieved. Suddenly, I was thrown into the final sprint.

Paperwork, Phone Calls, and Persistence

I filled out four sets of airline medical forms, including one that required a doctor’s signature no more than 14 days before departure. Naturally, our doctor was on vacation. She signed it on the day she returned, giving me five days to submit and get everything approved.

I went to FedEx to FAX the paperwork, and spent an hour battling failed transmissions. The next day, I drove 90 minutes round trip in the rain to pick up the new wheelchair.  I spent the afternoon finishing the rest of the airlines paperwork. 

My husband's new travel wheelchair. It's foldable, electric, and powered by a long-lasting battery.

Then came the phone calls: eight hours on hold and being bounced like a ping-pong ball between United and the Japanese airline partner. Each had different policies and systems, and they didn’t work smoothly with each other. At one point, I was told I had to pay $371 to rebook my husband’s ticket to accommodate the medical equipment. I pushed back, spoke to a supervisor, and eventually got it resolved—but it took hours of follow-up. The next day I spent another two hours on the phone with the Japanese airlines to go over all the paperwork and confirm everything was set. 

The final hurdle? Waiting for the Japanese airline's main office to confirm everything. At 11 p.m. that night, I got the email: he was officially approved to bring his medical equipment on board. Finally, 36 hours later! 

The Emotional Toll

All of this has been exhausting—mentally, emotionally, and physically. I know how lucky we are to be able to take a trip like this, but the toll of the preparation has been enormous. This kind of invisible labor often goes unnoticed by others—the research, the evaluating, the planning, the dealing with bureaucratic systems, the advocating, the emotional juggling. I’ve been completely wiped out the past few days. While I tried to keep calm and patient, my stress level has been high and I got knots in my shoulders.

Some friends and family members tell me they love planning vacations. I wonder if they’d still feel that way if they had to manage what I just did! 

Choosing Compassion and Presence

Right now, I’m focused on resting, letting go of the guilt about work I haven’t finished, and being kind to myself. I’ve done so much. I have just today left to pack, tie up loose ends with work projects, and do last-minute errands.

And then—we go.

Despite all the stress, I know this trip will be filled with long-lasting memories. Every precious moment together will be hard-won and deeply meaningful. I hope my sons and husband will feel just how much love and effort went into making this trip happen. I know I will be savoring it all.

I definitely feel like I’ve earned this vacation!