How to help people in your social circle better understand chronic illness
When I didn't explain my circumstances, people filled in the blanks themselves
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A lot of people know who I am. They know my name and recognize my face. They might describe me as “busy,” “organized,” or “the one who always has a plan.” I’ve built a life that, from the outside, looks full of work, family, friends, and commitments. For a long time, that version of me was the only one I allowed people to see. But knowing of me isn’t the same as knowing me.
Living with neuromyelitis optica spectrum disorder (NMOSD) has created a distance between those two things, between being known and being understood. It feels like being quietly unseen in moments when I most need support.
Lately, I’ve recognized that I lack community. My best friends are always there for me, but it’s usually through a phone call or video chat because they live an hour and a half away.
For years, I kept quiet about my NMOSD. It wasn’t because I was ashamed, but rather I didn’t want it to define me. I didn’t want to be “the sick one” or “the one who cancels every time.” I wanted to be reliable, capable, and strong. I wanted people to count on me.
But with the sharp, relentless, and all-consuming pain that comes with NMOSD, I got very good at smiling through it all. When it got bad enough that I couldn’t make it to a dinner, a birthday, or a casual Tuesday coffee, I’d cancel and say something vague like, “Something came up,” or, “I’m not feeling great.” Technically, it wasn’t a lie, but it wasn’t the truth, either.
The truth was that leaving the house felt like preparing for battle. I really wanted to go, but I didn’t let people see that part.
That’s where the unintended consequences crept in. When I didn’t explain my absence by fully describing my reality, people filled in the blanks themselves. They assumed I was busy, disinterested, or pulling away. Over time, those invitations slowed to a trickle. Check-ins became less frequent. And the circle got smaller — not out of malice, but misunderstanding. Suddenly, I’d protected myself into isolation.
That’s the part no one really warned me about when it comes to chronic illness: It doesn’t just take a physical toll; while I’m trying hard to control the narrative, it quietly erodes community.
Being more transparent
I now realize that by hiding my NMOSD, I didn’t prevent it from defining my life. I just made sure no one else understood why my life looked the way it did.
There’s a strange vulnerability in telling people, “I want to be there, but I can’t. And here’s why.” It feels like handing over a piece of myself that I’ve spent years carefully packaging. But it’s also where connection begins, because community isn’t built on perfect attendance. It’s built on honesty and saying, “I might cancel, but not because you don’t matter.”
It’s built on friends who understand that sometimes showing up means texting from the couch with a heat pack and calling it a win, or on people who don’t need explanations for an absence every time, because they already know the story.
It’s also built on bridging that literal distance, the hour-and-a-half drive that makes spontaneous hangouts impossible. It means being more intentional when I can show up, and more transparent when I can’t.
Community takes effort on both sides. But it also requires permission for people to see the real version of me, not just the highlight reel. I’m still learning how to do that, to say the quiet parts out loud, and that being truly known is worth the discomfort of vulnerability.
At the end of the day, NMOSD didn’t shrink my community; silence did.
Here’s the hopeful part: Community doesn’t disappear; it waits. It waits in the friends who meant it when they said, “Let me know how I can help,” and in the people who, once they understand, step closer instead of backward. It shows up in unexpected ways, too, with new connections, shared experiences, and people who get it without needing a long explanation.
When I started telling the truth, I noticed something shift. The right people didn’t leave; they leaned in and adjusted. They stayed. Some even showed up in ways I hadn’t given them the chance to do before.
I’ve learned that community isn’t about proximity or perfect consistency. It’s about presence, the kind that says, “I’m here, however that looks today.”
So now, when I say, “I can’t make it,” I also try to say, “But I still want to stay connected.” And more often than not, the response is exactly what I needed all along: “We’re here. However you can be, that’s enough.”
It turns out that being honest didn’t make my world smaller. It made my community stronger.
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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