Am I making excuses or simply explaining my reality with CF?

I’ve been trying to write more. I promise. But my tacrolimus dose is pretty up there, and it’s getting on my nerves. Literally. Nerve pain from the medication, an immunosuppressant used in lung transplant management, has me feeling like I’m driving diabetes lancets into my fingers with every touch of a key.

That tall dose also comes with something called “tacro brain” — a mushy mind. Ideas do come, but usually by the time I open my Notes app, they go. And when the occasional idea does make it onto the screen, I pretty much always hate it. Every thought is slippery, every memory swiftly fading.

(Speaking of, what was this column’s theme supposed to be?)

Anyway, I’d spend more time making this a nice piece of writing, but I’ve got my hands full with anxiety about planning a wedding while my brainpower fizzles out, and the disappointment of being a pastor who can’t focus on what hurting people are saying, and the frustration of repeated mistakes in my work as a content director, and the shame of forgetting the stuff that’s important to my loved ones. I could nail calendars and to-do lists to my computer screen and still manage to forget they exist.

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Oops. This whole column has been me making excuses, huh?

I know, I know: “You shouldn’t be so hard on yourself, Brad. It’s not your fault.” Sure, thanks, seriously. But will you still think that when I burden you, fail you, even hurt you?

I pinky promise I won’t blame you. It’s not like I don’t have intrusive, judgmental thoughts of my own when other disabled people disappoint me. I don’t desire a critical spirit, but one badgers me nonetheless. I’d love to claim that while gossiping I’ve never rolled my eyes and sighed, “They’re only making excuses. Yes, I know they have this or that going on, but they can’t always use those excuses.”

Maybe I’m projecting what I think others think of me, internalized ableism and all that. Or maybe I’m even jealous of people who simply and directly say that their disability is getting in the way of things. Because, for my thousand side effects and symptoms, I’ve only really described a handful to my community. And I rarely remind them. It’s too awkward and I’m too exhausted.

Come to think of it, maybe those aforementioned people have only explained a small bit and are just as exhausted with reminding me of them.

Maybe for all the times they “complain,” there are countless times they stay silent. Maybe they, too, back out of sushi dinner plans because they don’t want to be the group’s stick in the mud when reminding others that they’re not medically allowed to eat raw fish. Or maybe they, too, feel like disloyal flakes when they stay home from birthday parties because bad bacterial coughs terrify others in the COVID-19 era. Or maybe they, too, say they’re “just tired” when asked why they, with their antibiotic-ravaged hearing, don’t engage socially in loud environments.

Maybe they’re just tired of reminding friends that their disabled bodies aren’t the most cooperative.

Between myriad medication mementos and the domino-ing dozen diagnoses vying for attention, the disabled body can be a thing of awful inconvenience. But for all it inconveniences others, it’s inconveniencing us a hundredfold more. Alas, society doesn’t often think like that.

This is the point where, if not for zapping nerves, I’d proclaim the marvel of doing all we do in bodies like ours in a society that decries yet perpetuates survival of the fittest.

You know what, actually, that might be how I’ll land this plane. Instead of dispensing sensitive, sweet advice on how to share with your community that your disability comes with limitations, I’ll say this: Relentlessly remind them that you’re disabled. Some will say that’s too much and leave. Others will learn to step up by learning your reality and how they can better support you. I’m tired of fearing the former too much to invite the latter. And I’m coming to realize it’s more exhausting to pretend to be healthy than it is to remind people that I’m not.

Let healthier friends hear the ways they’ve underestimated your grit, let them remember their health privilege and that you’ve worked harder than them at many points to get on their level, let them realize their distaste for your “excuses” might be the revelation of their own insecurity.

Also: Yes, we are more limited than most of society. But after the years of carrying immense burdens, I’d say we’re generally more resilient. Be proud. I’m not saying you’re a hero or brave, like many awkwardly do when they don’t know what else to say. I mean only that society hands you a lot of crap, but you’re still here.

Time to rest my fingers.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.