Getting older with NMOSD reveals some powerful truths
If this disease has taught me anything, it's to respect my own needs
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When I was younger, I thought confidence was something people were born with. Some people just seemed to have it. They’d walk into a room without second-guessing themselves. They’d voice their opinions without rehearsing them in advance. They’d wear whatever they wanted and somehow never appear to care what anyone else thought.
So, as I got older, I mimicked them. I was the embodiment of “fake it till you make it.” And suddenly, people started saying I was confident.
When neuromyelitis optica spectrum disorder (NMOSD) entered my life, it accelerated a lesson that aging had already begun to teach me. Life is too short and unpredictable to spend it worrying about what everyone else thinks about me.
The freedom of not caring about everyone’s opinions is an unexpected gift of getting older. Sure, I can do without the wrinkles, that mysterious noise my left knee makes when I climb stairs, or my inability to read restaurant menus in dim lighting now, but the confidence of not caring has me dancing in my kitchen on occasion.
Figuring out what I haven’t figured out
Living with a chronic illness like NMOSD changes one’s relationship with time and energy, as we become acutely aware that both are limited resources. There are days when I have to carefully consider how much energy I have available and where I want to spend it. And once I start budgeting my energy, I become much less willing to waste it on nonsense. Suddenly, what other people think about my footwear falls remarkably low on the priority list.
There was a time when I willingly wore shoes that were beautiful, but felt like a medieval torture device. If they looked good, I could endure the discomfort. But now, they sit covered in dust at the bottom of my walk-in closet, replaced by several pairs of Adidas Stan Smiths in various colors. If a shoe offers arch support, cushioning, stability, and the possibility of walking through an entire grocery store without regretting my life choices, it wins. Every time. The older I get, the less interested I am in suffering for fashion.
The same principle applies to many other areas of life, like the ability to say no. I used to include an elaborate explanation when I declined an invitation, but now a simple, “No, thank you” is sufficient. If I don’t want to do something, then I won’t.
Another unexpected freedom is caring less about appearing perfect. Chronic illness has a way of humbling you. At some point, my circle of friends have seen me wearing a hospital gown, have overheard me discuss the lack of bodily functions with my specialists, and have even seen me have an epic meltdown trying to get off a public toilet seat that was too low. The illusion of perfection doesn’t survive those experiences. And honestly, that’s a relief.
I no longer feel the need to pretend I have everything figured out. I don’t. None of us do.
What I’ve discovered is that confidence doesn’t always arrive when you’re young and invincible. It often arrives after you’ve survived things you never imagined you’d face. It arrives after setbacks, mistakes, disappointments, and circumstances you didn’t choose. There’s a certain confidence that comes from knowing you’ve handled difficult things before and will figure out whatever comes next.
Through all these years of living with NMOSD, my favorite part of getting older is my ability to identify drama and avoid it. I no longer need to win every debate or need everyone to agree with me. Peace has become much more appealing than being right. If given the choice between engaging in unnecessary drama or spending a quiet evening at home with my dog, a good book, and comfortable sweatpants, the dog wins every time. The older version of me doesn’t even hesitate. With time, NMOSD has taught me that happiness isn’t found in fulfilling everyone else’s expectations. It’s found when I respect my own needs. Perhaps that’s the greatest freedom of all.
NMOSD taught me that my energy is valuable. Aging taught me that I don’t need to justify every boundary I create. Together, that’s become a surprisingly powerful combination.
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.
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