What NMOSD has taught me about showing up for the people I love

At 44, I’ve reached the age where life starts handing out plot twists no one asked for. Parents get sick. Friends, the same ones I once stayed out too late with, now text me about big health issues. And every so often, someone disappears entirely, leaving a silence that feels too big for the room.

It’s a season of life that’s crept up on me, so here I am, trying to be useful where I can. And strangely enough, neuromyelitis optica spectrum disorder (NMOSD), the diagnosis that has knocked me out a few times, has become one of the ways I can help.

Living with NMOSD means I’ve spent more time in hospitals than I ever wanted. I’ve learned the rhythms of the healthcare system, the shortcuts, the questions that matter, and the hidden truths the doctors are trying to say, but can’t. I’ve learned how to advocate for myself because I had to. Now I find myself using that same knowledge to advocate for the people I love.

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An advocate for loved ones

It breaks my heart to see the people I love go through their own health battles, knowing exactly how heavy that road can be. I recognize the fear behind their eyes, the exhaustion in their voice, the way hope and frustration can sit side by side in the same breath. I’ve lived those long nights, those impossible decisions, those moments where your body feels like it’s betraying you.

So, when someone I care about is suddenly thrust into that world, it hits me in a place that’s both tender and familiar. I wish I could shield them from every needle, every scan, every moment of uncertainty, but all I can do is walk beside them with the empathy that comes from having been there myself.

For instance, when conversations turn to treatment plans and medications, I can offer something the doctors can’t: what it actually feels like to be on these drugs. When someone I know was prescribed a nerve pain medication I’ve taken for more than a decade, I was able to reassure them that it takes time to kick in, so patience is key. When someone else was put on steroids, I explained that they’re fantastic in the moment, but can be brutal over the long haul. And after several days on morphine, I know firsthand how your brain can start playing tricks on you, clouding your judgment and causing those odd little tremors. I’ve lived these things. I know how they land in a body, not just how they’re described on a label.

When someone I know needed IV treatment, I was able to suggest a peripherally inserted central catheter, or PICC, line, because anyone who’s been through long-term treatment knows IV lines are basically the cheap flip-flops of medical access — fine for a day, but not built for endurance.

I’ve also become the unofficial MRI coach in my circle. My advice is simple: Close your eyes before the machine starts moving, pretend you’re entering a peaceful cave, and focus on your breathing. If you open your eyes mid-slide, you will absolutely regret it.

NMOSD has given me an empathy toward my loved ones that I can’t fake. Take long hospital stays, their own special kind of misery. The boredom. The fluorescent lights. The number of times the nurses wake you up for blood pressure readings, blood work, and pain scale ratings. And the food, if you want to call it that, tastes like sadness puréed and served lukewarm. So, when I visit someone, I bring them real meals. Something warm and recognizable that reminds them they’re still part of the world outside those walls.

But maybe the most important thing NMOSD has taught me is how to talk to specialists. Not with demands or internet printouts, but with curiosity and partnership. So now, on behalf of my loved ones, I’m often the first to ask the tough, but necessary questions: “What are the options?” “What are the risks?” “What would you recommend if this were your family member?” Doctors tend to respond differently when they feel respected rather than challenged, and patients feel more in control when they actually understand the path ahead. I’ve also become the translator, taking the medical jargon specialists throw at us and turning it into something human, something the people I care about can actually use to make decisions about their own care.

I never wanted NMOSD. I mean, who would? I never wanted the hospital wristbands, the infusions, the fear, or the uncertainty. But I also can’t deny that it’s given me something unexpected: the ability to show up for others in ways I couldn’t have before. I’m not intimidated to ask tough questions, provide guidance, or advocate for my loved ones during their medical journey.

At this age, illness is becoming part of the landscape — not just for me, but for the people I love. And while I can’t stop the hard things from happening, I can walk beside them with a little more wisdom and a lot more heart.

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.