I may have the dragon fruit of diseases, but let’s not compare apples to oranges

If I had a dollar for every time someone said, “I shouldn’t complain to you,” I could probably fund my own research grant.

It usually happens right after someone shares something stressful, such as their work drama, tough dental work, or a recent bad infection, and then suddenly they remember I have neuromyelitis optica spectrum disorder (NMOSD). Cue the awkward pause, the apologetic wince, and the inevitable, “But I mean, compared with what you deal with …”

Here’s the thing: Yes, NMOSD is no walk in the park. It’s more like a walk in a park where the ground occasionally disappears, the squirrels throw acorns at you, and the map is written in a language no one speaks. But that doesn’t mean other people’s challenges magically shrink in importance. Pain is pain. Stress is stress. Life is life. And we’re all just trying to get through it with some dignity and maybe a snack and a nap.

But I’ll be brutally honest. When someone says, “I shouldn’t complain to you,” it reminds me of how dire my situation can be and has been. Not in a self-pitying way, but in a “wow, this is my normal and nothing but death is worse than having an incurable disease” kind of way. I find myself fighting the urge to get angry at the other person. While their sympathy comes from a good place, we weren’t talking about me. Why does every challenge in life have to be compared with my illness?

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We are all carrying something

NMOSD has a way of recalibrating your sense of scale. What used to be a big deal becomes a medium deal. What used to be a medium deal becomes a “Do I have the energy to care about this today?” deal. And what used to be a small deal — well, sometimes it becomes a big deal again, because unpredictability is the unofficial mascot of this condition.

Still, comparing struggles is like comparing apples to oranges. Or, more accurately, comparing apples to dragon fruit because NMOSD is definitely the dragon fruit of chronic illnesses. Rare, confusing, and people often pretend they know what it is when they absolutely do not.

When someone tries to compare their challenges with mine, I’ve learned the right response isn’t to minimize their feelings or to elevate mine. It’s to gently remind them that we’re all carrying something. My “something” just happens to come with a complicated name and a medical team that could fill a small auditorium.

So, what do I say? Usually something like: “Hey, your hard is still hard. Mine doesn’t cancel yours out.” Or, if I’m feeling spicy: “Trust me, I can handle hearing about your annoying co-worker. NMOSD hasn’t taken me out yet.”

Humor helps. It keeps things human. It keeps me human. Because one of the sneaky things about living with a rare disease is that people sometimes start treating you like a fragile museum exhibit — look, but don’t touch; admire, but don’t relate. I don’t want that. I want connection. I want conversation. I want to hear about your life, even if your biggest problem today is that your latte was made with oat milk instead of almond.

Living with NMOSD has taught me resilience, patience, and the fine art of celebrating tiny victories. Getting out of bed on a tough day? Victory. Not dropping my coffee mug? Victory. Not rolling my eyes when someone says, “You look fine, though”? Major victory.

But it’s also taught me something else: Empathy isn’t a competition. No one wins by having the worst story. We win by showing up for each other, even when our experiences don’t match.

So, if you’re in my life, please, complain away. Vent. Share. Be human with me. I don’t need you to pretend your struggles don’t matter. I just need you to know that mine don’t make yours any less real.

And if you’re living with NMOSD or any chronic condition, here’s my little pep talk: Your life is still full, still meaningful, still yours. You’re allowed to laugh. You’re allowed to cry. You’re allowed to be frustrated. You’re allowed to be fabulous. And you’re allowed to remind people, kindly, that comparing apples to oranges never helped anyone.

We’re all doing our best with the fruit we’ve been given. Mine just happens to come with spikes.

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.