I'm looking for advice on traveling with an immunocompromised child with chronic fatigue. Please be gentle with your replies – I'm going to get vulnerable about medical conditions and all the mental/emotional junk that comes with that.
My husband and I have traveled to Japan a half-dozen times, but this is our first time bringing our kids (6 and 8). We're good on the itinerary side of things – taking things slow and easy, taking advantage of taxis – but I'm looking for help around the more nuanced side of traveling while disabled. Our 8yo has Juvenile Idiopathic Arthritis and is taking immunosuppressive drugs that cause vulnerability to infection and chronic fatigue. We've got the immunocompromised side of it down (I'm I/C too), but I'm trying to research any tools or tips for navigating an invisible illness in Japan, like her needing to take a reserved seat on the train during rush hour, etc.
I have a ton of anxiety over being perceived, even in our home country (helloooo, hyper-vigilance). For those who also have an invisible illness, you probably also have a "but you don't look sick" story that left you with Feelings™. My daughter does not have a story like that yet, and I want to keep it that way for as long as I can. For some folks, it's probably as simple as, "I'm never seeing them again, so I won't let it bother me." While I would LOVE to be able to do that (srsly, I'm so jealous), I'm unfortunately a jittery gremlin of a human who can't just let things roll off my back.
We're semi-fluent in Japanese. My husband is near-native, and I worked for the Japanese government a decade ago which informs my emotional response to this situation as I navigated my autoimmune diagnosis while employed there and had some profoundly harmful things said to me. I'm aware that we likely have a pass on etiquette being tourists, but I'd feel way more comfortable if I had some tools and strategies in my back pocket ahead of time. Despite our familiarity with the country, I suspect our knowledge is outdated. Does anyone have ideas for what we can do and/or recent experience with a situation like this?
Thanks, everyone.
by happilyangryaboutit