Should I complain about my NMOSD symptoms or not?

I hate complaining. Truly. Deep in my soul, I believe in powering through, staying positive, and not becoming “that person” whose personality is just one long sigh. Victim mentality? Not my brand. I like to think I’m more of a “grit, grace, and decent hair day” kind of person.

But here’s the problem with neuromyelitis optica spectrum disorder (NMOSD): If you don’t complain, people assume you’re fine. And when people assume you’re fine, they forget you’re battling a rare autoimmune disorder, and that includes those closest to you. While I’m proud of my acting skills, I detest having to remind everyone of my limitations.

Even more challenging is when people outside your circle say deeply confusing things like, “You look great!” or, worse, “I’m so thankful that you’re feeling better!” Feeling better? I am currently negotiating with my left arm to stop feeling as though I’ve been sitting in the sun for days without the tan to prove it.

So welcome to the extremely nuanced, occasionally chaotic, and often unintentionally comedic world of the NMOSD complaint.

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March 29, 2023 Columns by Jennifer V.

An open letter to my past self, who just received an NMO diagnosis

The multiday complaint (the sequel nobody asked for)

A normal illness lasts, what, a few days? There’s a beginning, a middle, and an end. Maybe a villain or two. It’s a clear storyline.

NMOSD said, “What if we just … stretch that out indefinitely?”

My update starts innocently: “I’ve been a little off the past few days.”

But then I must define “a few days,” which means going back to Tuesday, when my vision decided to blur like I’d applied a soft-focus Instagram filter to real life. Wednesday was nerve pain (fun!), Thursday was fatigue (even more fun!), and today, it’s like my body woke up, spun a wheel, and said, “Let’s try everything at once and see what sticks.”

People want closure. They want me to say, “I’m getting better.” I want that, too. Truly.

But instead, I offer, “Yesterday, I could walk normally. Today, my leg has trust issues.” I can feel the room shift. They weren’t ready for episodic content. They thought this was a short film.

The multisymptom complaint (the sampler platter nobody ordered)

This is where I absolutely lose people. Someone asks, “What’s going on?” and I launch into what can only be described as a medical variety show.

“Well, my vision’s off, my legs feel like overcooked spaghetti, my arms are doing this weird burning-tingly thing, I’m exhausted, and —.”

At this point, they’re blinking slowly, like a computer buffering. Because people want one problem — a clean, simple issue. “Oh, it’s my knee.” Great. Love a knee problem. Knees are relatable.

Meanwhile, I’m out here hosting a full symposium of symptoms. There is no headliner. Everyone is speaking at the same time.

“Which one is the worst?” they ask, bravely.

Ma’am. Sir. I cannot rank these like Canada’s top tourist attractions. They are all equally committed to ruining my vibe. It’s like trying to choose your least chaotic houseguest when they’re all setting something on fire.

The exhaustion complaint (where I literally don’t have the energy)

And now, the twist: On the days when I should complain the most, I physically cannot.

This is fatigue demanding everyone’s attention. Not the “I stayed up too late watching one more episode” kind. This is the “If I lie down, I may merge with the couch and become a permanent fixture” kind.

Someone asks, “How are you today?” And in my head, I am ready. I have a whole monologue prepared, along with charts, graphs, and possibly a PowerPoint.

What comes out is, “I’m OK.” Because talking takes effort. Explaining takes effort. Simply existing is already using up 99% of my available battery, and complaining would require me to plug in a charger I do not have.

So I drastically underreport.

I say, “I’m fine,” while internally filing a complaint with my nervous system, my calendar, and the universe at large.

So do I complain or not?

Here’s what I’m realizing: Complaining, in this context, isn’t negativity. It’s translation.

It’s taking something wildly unpredictable, invisible, and borderline absurd, and trying to explain it in a way that makes sense to people who are (blessedly) not living in my body.

It’s me saying, “I’m still strong. I’m still capable.” But also, “Today, my spine feels like it’s hooked up to a high-voltage electrical outlet.”

If I don’t say it, people assume I’m fine. But I’m not — I’m just very efficient at managing expectations and conserving energy like I’m off-grid.

So, yes, I still hate complaining. But I’ve accepted that a little well-placed, slightly dramatic, occasionally hilarious complaining is necessary. Also, as a general rule, if I say, “I’m OK,” there is a 70% chance I am not OK, a 20% chance I forgot what you asked, and a 10% chance I am thinking about snacks.

Honestly, it’s probably snacks.

Note: Neuromyelitis News 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 providers 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 Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.