How a floppy 13-year-old pug who I’ve never met saves me time explaining my disabilities
Noodle the pug’s “No Bones Days” inadvertently help me describe chronic illness symptoms with accuracy and conciseness. Here’s how…
The story behind “Bones Day” (which you can read fully here) is that a guy called Jonathan Graziano wakes his pudgy pug Noodle up everyday, and if Noodle doesn’t flop back into his dormant position, it’s a Bones Day. If Noodle does flop, it’s a No Bones Day. Graziano documents these daily tests on TikTok. Since TikTok is unavailable in Hong Kong, I get my Bones Day updates from Twitter fan accounts, and thus I am now an avid follower and fan.
The daily updates get extrapolated to suggest that if it’s a Bones Day, the Twittersphere shall have a productive day, but if it’s a No Bone’s Day, the people of Twitter should take it easy. In summary, Noodle is an oracle.
I’m not sure if I’m allowed to co-opt the term “No Bones Day” to describe how chronic illness affects my life, but I have and it has made me feel better about days when my disabilities are too overwhelming to go about a normal day.
If you’ve read my last blog post, Why do I bring up my disabilities when I could just like… not?, one of the reasons I give for telling people I’m disabled is that it saves me so much time asking for help when people know I’m disabled from the get-go. Using the phrase “No Bones Day” does the exact same thing. Before, when I had to back out of a commitment because I couldn’t get out of bed, I’d find it hard to explain that I was “tired” or “in pain” in a way that caffeine and opiates can’t cure.
I find that English doesn’t have a word that accurately describes the symptoms of chronic illness, chronic fatigue syndrome, and fibromyalgia. Words like “in agony” or “exhausted” are either so strong that they sound hyperbolic or so overused that they sound well… ubiquitous. People don’t really “get it” because isn’t everyone exhausted? Isn’t everyone in some level of pain?
However, since finding Noodle’s Twitter, I’ve started telling people when I have “No Bones Days”. For instance, if I have to cancel on someone, I’ll text them, “Hey, I’m having a No Bones Day today and can’t get myself into town.” I don’t even need to preface the text with a lengthy explanation of what a NBD even is, replete with links to Noodle’s Twitter and that article I provided at the beginning that you probably didn’t click on because you’re still reading this blog post.
Flagging a “No Bones Day” trivialises the issue enough so as not to depress everyone with the crippling reality of your disease, but it also underscores the fact that you literally cannot get out of bed.
When I do go out and use my cane, sometimes people ask me what it’s for and why I have it. Usually it’s people who knew pre-cane me or it’s people who are bursting with so much curiosity that they ask strangers personal questions.
My first response when these questions happened was to mumble and waffle about my osteoporosis, chronic fatigue, and fibromyalgia, but that was a big TMI and I didn’t want to go into all of that.
My second response was just saying outright, “I’m disabled.” But that was aggressive and upset a lot of people. (We can unpack how it’s pretty ableist to get upset at a disabled person for telling you that they’re disabled when you asked, but that’s for another day).
Now I respond with, “I’m having a No Bones Day.” It’s silly enough that you don’t offend or upset anyone, it’s weird enough that people leave you alone, and it’s accurate enough that you’re not lying.
If you have any condition that puts you in the same camp as Noodle and me with our No Bones Days and if you struggle to justify yourself when you can’t be a functional, abled person, I recommend trying out “I’m having a No Bones Day” as a phrase to keep in your back-pocket. It’ll make you sound gelatinous, mysterious, and terse.
As I said in my last blog post, disability is a uniquely lonely experience because diseases vary so greatly, even within the same diagnoses. You are under no obligation to disclose your disability to anyone if you don’t want to. This blog post is just me sharing how I disclose mine and how it makes me feel better.
Quite a few people ask me what my disabilities are. I have seven, four of which are autoimmune: autoimmune hepatitis, autoimmune cholangitis, ocular myasthenia gravis, celiac disease, ME/CFS, fibromyalgia, and osteoporosis.