With a compromised immune system, constant infections are my nemesis
Infections shape my life just as much as major symptom flare-ups
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Ever get that quiet, nagging sense that something in your body just isn’t right? For me, it started with extra trips to the bathroom — nothing dramatic, just enough to make me pause. Before long, I realized I was dealing with yet another bladder infection.
Living with a rare autoimmune condition like neuromyelitis optica spectrum disorder (NMOSD) means that a compromised immune system becomes part of daily life. Infections don’t arrive as isolated incidents; they stack, overlap, and weave themselves into my routine. Each new symptom leaves me questioning whether it’s “just” an infection or another ripple of the larger condition I’m constantly managing.
Attending work networking events has introduced a new challenge I never expected: close talkers. It’s not their fault. We’re packed into echoing halls where everyone has to raise their voice to be heard. When strangers shout pleasantries and casual conversation into my face — close enough that I can smell what they had for lunch — I can’t help but worry about germs. For most people, catching a cold is an inconvenience. For me, it almost always turns into a heavy chest infection.
The bad and the ugly
With NMOSD, my immune system is always compromised, and infections pile up faster than I can treat them. At any given moment, I’m juggling at least one, whether it’s a bladder infection, yeast infection, ear or eye infection, chest cold, oral thrush, cold sore, or even a tiny cut that refuses to heal. I’m beyond fed up with my body. My immune system feels like public enemy number one.
To make matters worse, most of these infections are unpleasant; they’re goopy, itchy, and uncomfortable. This is the “bad and ugly” that rarely gets discussed alongside the benefits of treatment for keeping NMOSD at bay.
All these common infections are treatable with antibiotics or even over-the-counter medications, but the cycle never stops. I’m constantly spending money on medications, booking appointments with my primary care doctor, and explaining the same symptoms again and again. It helps that here in Ontario, Canada, pharmacists can now prescribe antibiotics for many of these infections, but it still means carving out time, traveling, and managing yet another round of treatment. Some days, it feels like I might as well be on antibiotics full‑time.
What makes all of this even harder is its invisibility. When people talk about NMOSD, they focus on the big, dramatic symptoms and consequences, such as vision loss, paralysis, and hospitalizations. Those are real and terrifying, of course. But the quieter, constant grind of everyday infections rarely enters the conversation.
They’re not headline‑worthy, so to speak, but they shape my life just as much as the major flare-ups. They dictate my routines, energy, social interactions, and even the way I stand in a crowded room, trying to angle my body away from someone’s breath.
These infections chip away at my confidence in my own body. They interrupt my plans, drain my wallet, and force me into a cycle of vigilance that never really ends. And because they’re “common,” people assume they’re no big deal. But for NMOSD patients, they’re a major concern, often the first sign that something bigger might be brewing beneath the surface.
I’ve learned to navigate this reality with a mix of practicality and resignation. I wash my hands more than most, carry sanitizer like it’s a second wallet, and strategically position myself in crowds. I try to stay ahead of symptoms without letting them consume every thought. The truth is, living with NMOSD means accepting that my immune system will never play by the same rules as everyone else’s. Still, sharing this part of the NMOSD experience matters. Behind every common infection is a struggle for normalcy while our bodies fight battles no one else can see.
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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