When eye shadow and fingernail polish are types of treatment

Some days I feel like I’m made of symptoms. Living with neuromyelitis optica spectrum disorder (NMOSD) means navigating a body that’s constantly shifting beneath me, unpredictable in ways that defy preparation.

Speaking of symptoms: One moment, my spine burns with relentless pain. The next day I’m ravenous, only to be hit with nausea before I even lift a fork. My vision, thank goodness, is mostly intact, but there are days when my left eye blurs just enough to remind me I’m not in control.

This constant instability has worn me down. The emotional exhaustion of never knowing what version of myself I’ll wake up to has added a stress to my life that’s hard to explain.

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I know I have a habit of retreating, falling into a routine that feels safe and small. Sweatpants become my second skin, my hair can live in a permanent messy bun, and I can easily rotate through the same soft, stretched-out T-shirts like armor. It’s survival mode, pure and simple. But it’s also a rut that makes it harder to recognize myself beyond the diagnosis.

Then, the other morning, something shifted. I was cleaning out my bathroom drawers and found one of my favorite palettes of eye shadow. So for no reason at all and with nowhere to go, I stood in front of the mirror and put on a shiny shimmer of gold.

And I suddenly felt better.

Small touches of humanity

It wasn’t about vanity. It wasn’t about pretending to be OK. The pain I was in didn’t go away. It was about remembering that I still exist beneath the layers of pain and worry. That small act, smoothing on a deep gold shade, was my way of showing up for myself. Not just as a patient, but as a woman reclaiming the parts of herself NMOSD has tried to bury.

From that moment forward, I started treating these little rituals as lifelines. I dressed up to drive my daughter to camp. I curled my hair in a high ponytail, so it was still out of my face, but I’d feel the light bounce every time I walked around the house. I put on makeup as a form of self-expression rather than concealment.

At first, I felt like I was lying to myself. I still have NMOSD, no matter how I dress it up. But I soon realized that joy and healing aren’t opposites. Reconnecting with my reflection has given me permission to reconnect with the life I want to live.

So I went out and had my nails done, too. I selected gel nails with a cat-eye nail polish, a mesmerizing design trend that mimics the reflective shimmer of a cat’s eye, hence the name. The artist applied a magnetic gel polish. Before curing, she used a magnet wand over the wet polish to manipulate the metallic particles.

I was in love with the custom shimmer pattern across my fingertips until I went for a routine MRI. The technician even commented on how beautiful my nails were, so I started to describe the application, until I got to the magnetic gel polish part. That’s when we both realized at the exact same moment that I might need to cancel my scan. Thankfully, my fingers never heated up and I was able to complete my MRI.

There’s something powerful about choosing to show up, especially when it feels like the world has forgotten you. Dressing up has helped me reconnect with my identity. Putting on makeup has reminded me I can still choose how I present myself.

Living with NMOSD means I must adapt. Some days, my version of dressing up is switching out pajamas for leggings and adding earrings. Some days, putting on lip balm feels like a victory. And that’s OK. The point isn’t perfection; it’s intention.

I know this illness will always be part of my story. The scars from the ports, the medications, the bimonthly Ultomiris (ravulizumab-cwvz) treatments, they’re all real and relentless. But so is my spirit. And when I take time to nurture that spirit, even in small ways, I start to feel better.

Better doesn’t mean cured. It means more connected, more seen, more alive. I’m glad I’ve found a new way to feel better.

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.