Grieving how NMOSD has left me uncomfortable in my own skin
Sometimes I just need to vent about the losses and challenges I face
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Do you ever have moments when you stand in front of the mirror longer than you should and don’t recognize the person staring back at you? Sometimes I look at myself, and my tired eyes, stress wrinkles, and bloated face make my appearance unfamiliar. It’s a body that resembles mine, but isn’t quite right.
I know the person staring back at me has been in a quiet war for some time. It’s in that moment that I start to catalog all my flaws, limitations, and the things I can no longer do with ease. The self-loathing creeps in softly, as if it knows precisely where to land.
Before I proceed, I need to tell you that I am venting. This is about neuromyelitis optica spectrum disorder (NMOSD), but it’s not tidy or inspirational in the way illness stories are often expected to be. This is me opening my personal journal and letting the mess breathe for a moment.
NMOSD has taken many things from me, but the loss that cuts deepest is comfort in my own skin. I used to inhabit my body without giving it a thought. I trusted it. Now, every sensation is suspect. Every ache comes with a question mark. My body feels like something I must manage, rather than live in. That shift, from ease to vigilance, has changed how I see myself in ways I’m still trying to understand. I don’t feel confident enough to reach for a goal — not before thinking about NMOSD and possible limitations and what-if scenarios.
NMOSD has also taken away my positive attitude. Most days, I can find the silver lining, but it’s an effort. My sunny disposition is a character I play, but deep down, I’m cautious, scared, and hesitant. I want to be the upbeat, glass-half-full person I was before my diagnosis, but she’s hard to find sometimes. There is an unspoken pressure placed on people with chronic illness to be inspirational, grateful, and strong always. Some days, I can do that. Other days, forcing optimism feels like another task on an already exhausting list. The truth is that a constant positive attitude can become a performance, and performances are draining.
Then there is the desperation. It’s not always loud or dramatic. Sometimes it’s quiet and persistent, sitting in the background while I calculate energy like currency. Desperation shows up when I want answers medicine can’t yet give me, when I want certainty instead of probabilities, when I want my future to feel less fragile. It’s there when I catch myself bargaining with my body, promising rest or compliance in exchange for one good day. I fear the dark days that inevitably happen with NMOSD.
This illness has also taken something deceptively simple: my personal time. Not just time alone, but unclaimed time. Time that isn’t scheduled around treatments, recovery, appointments, or fatigue. Even rest becomes structured, purposeful, prescribed. The spontaneity of choosing to do nothing, or everything, has been replaced by careful planning. NMOSD feels like a full-time job when I’m juggling appointments, tests, and treatments. My days are no longer mine in the way they once were, and that loss is harder to explain than it is to feel.
Sitting with the discomfort
All this self-loathing lives in my journal, not in neat submissions but in angry scribbled fragments. There is much grief written between lines of hope and gratitude. As I read through some of my entries, I’m forced to sit with my discomfort and resentment toward NMOSD. Writing is where I admit the things I don’t always say out loud. That I’m tired of being brave. That I miss who I was before my body became a conversation piece. That some days, I don’t want to learn another lesson or find another meaning.
And yet, venting like this matters. Naming these feelings doesn’t make me weaker; it makes me more honest. Mental health isn’t only about coping strategies and positive reframing. Sometimes it’s about being allowed to say, “This is hard, and I hate it,” without immediately following it with a redeeming takeaway.
So, thank you, reader, for letting me vent. For sitting with the discomfort of my words. For understanding that this, too, is a form of care. Writing this is how I breathe a little easier, how I make space for myself again, even if only on the page.
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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