The season of letting go of the curated self that MS helped build

There’s a kind of loneliness that comes from being almost understood — close enough for someone to recognize your outline, but not close enough to feel your weight. It’s a loneliness that doesn’t creep in all at once. It settles slowly, the way dust gathers on a shelf you thought you’d already wiped clean.

For decades, that version of being “almost known” felt familiar. Honestly, it felt safe. After being diagnosed with relapsing-remitting multiple sclerosis at a young age, I quickly learned how to be easy to interpret and get along with. When you’re trying to blend in, the goal becomes minimizing disruption — smoothing your edges, quieting your needs, keeping the more complicated parts of you tucked away so people around you don’t have to make extra room.

Multiple sclerosis (MS), with its unpredictable rhythms and invisible symptoms, only sharpened that instinct. I became fluent in grit and masking, hiding sudden overwhelm behind a steady expression, covering cognitive slips with practiced language, pushing through fatigue with rehearsed steps, or disguising pain with a smile. I spent years learning how to look fine. The problem is that people believed me, and I disappeared in plain sight so effectively that sometimes I got lost in the illusion.

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The unsettling exposure of being seen

It’s no surprise, then, that in relationships, I gravitated toward people who could read pieces of me, but not everything. There’s a deceptive comfort in being partially seen. Someone might know your history, habits, or preferred coffee order. They may know the stories you tell easily, the symptoms you can package neatly, and the parts of your life you’ve translated for public consumption. They know just enough to make things feel familiar. But that isn’t the same as presence.

Being almost known creates a hollow space that’s easy to fill with excuses. They’re tired. They didn’t notice. It’s not a big deal. You stop expecting anyone to catch the quieter signals like the tiny wince when pain spikes, the shift in your breathing, or the difference between “I’m fine” and “I can’t do this today.” You don’t expect it because you’ve trained yourself not to need it.

But the body still keeps track. It remembers each small miss, every moment support didn’t arrive, each time you swallowed your needs because naming them felt like asking too much. These micro-abandonments accumulate, and suddenly you realize you’ve built a life around being partially visible.

But sometimes, unexpectedly, you stumble upon someone who sees the parts you didn’t realize were still visible. Maybe they notice the shifts in your breathing, the slight hesitation before you stand up, the moment your eyes glaze from sensory overload, and they attune, not out of obligation, but out of an instinct to understand. To me, that kindness and gentle awareness can feel louder than anything else. It’s disarming.

Receiving that level of care feels more vulnerable than any symptom. MS taught me to cling to independence like a shield. Relying on others meant risking disappointment or being seen as a burden and slowing someone down. It meant exposing limitations I worked so hard to hide. For a long time, needing help stirred something close to shame; an old reflex from years spent trying not to be “too much.”

So, when someone shows up differently and softens their tone without being asked, or reads quiet cues accurately, or gives space to rest without apologizing, it challenges every protective instinct I’ve developed. I never know whether to lean in or run. Being seen fully is its own kind of unsettling exposure. My nervous system still can’t always tell the difference between tenderness and threat.

A promise of something deeper

Here’s the truth I’m beginning to learn: Being almost known might feel safe, but it leaves you starving. Being fully known as the unedited version of yourself — messy, honest, and inconveniently human — offers something deeper. It offers connection instead of approximation or performance. It offers rest instead of vigilance. And true rest, for someone living with MS, can feel like a miracle.

Letting yourself be known means loosening your grip on the curated version of yourself. It means trusting that the real version of you who gets overwhelmed, who loses words, who runs out of energy at inconvenient moments, is still allowed to exist and take up space, is worthy of being cared for, and still worthy of being met with tenderness instead of tolerance.

The work now isn’t perfecting autonomy or mastering resilience in relationships. I believe it’s unlearning the instinct to shrink and believing that the people meant to stay will choose the unabridged version of you. Maybe healing isn’t about becoming easier to love; maybe it’s about believing you never had to earn it in the first place.

MS taught me how to disappear. But this season might be teaching me how to let myself be found.

Note: Multiple Sclerosis News Today 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 provider 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 Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.