Feeling defeated by NMOSD’s effect on my appearance

Unsolicited comments are hurtful, not helpful, this columnist says

Jennifer van Amerom avatar

by Jennifer van Amerom |

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Dear Reader,

It’s me, Jennifer, hoping you don’t mind if I occupy the tiniest space in your mind for the shortest amount of your time. This request is because I feel insignificant right now. When people point out that I’m sick, when they comment on visible symptoms of my neuromyelitis optica spectrum disorder (NMOSD), it makes me feel like I’m bothering them. I don’t want to be a burden to society, yet that’s exactly how I’ve been feeling lately.

Don’t get me wrong, I try to make an effort. I bought myself a new outfit. I put on some bright lipstick. I even used styling products in my hair. But there’s nothing more embarrassing than feeling great, only for someone to comment on an aspect of my appearance that’s related to NMOSD.

This circumstance has happened on several occasions recently, specifically when the temperature fluctuates around me. My face becomes flushed as if I’ve just run a marathon. I start to sweat, even if I don’t feel warm. There’s no outfit or amount of makeup that can hide my bright red face or the hives that suddenly appear around my neck.

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I don’t need a professional therapist to point out my self-defeating inner dialogue. I know I’m making life more difficult by beating myself up about these visible issues, but I’m only human. Unsolicited comments on my appearance are yet another reminder of the challenges I face due to NMOSD.

As summer approaches, I worry about what I’ll look like. I used to worship the sun, but perhaps my Canadian upbringing and my comfort in the cold have finally won. Will I ever get to lounge by the pool again without looking like a boiled lobster? Will I always look sweaty, like I’m nervous about something? There’s no point in wearing foundation anymore because I’ll likely end up wiping it away with my sweat, or worse, look like I’m trying too hard to cover my flushed face with foundation that doesn’t match my skin tone.

I wish that people wouldn’t comment on my appearance because once they do, I become self-conscious. NMOSD is constantly throwing new curveballs at me. Its ever-changing symptoms and side effects are always a surprise. If I’m smiling, it’s because I’m handling NMOSD with as much grace as I can muster today, so please don’t burst my delusional bubble.

I know I’m sick. I don’t need the reminder.

If you want to say something, tell me that you’re happy to see me. Being out in public is often an accomplishment for NMOSD patients. We’re battling ourselves inside and out, and interacting with others requires additional effort.

I know I’ll forever be a work in progress. I’ll also never be happy with my appearance, my reality, or how I feel. So if I’m sulking, let me. If I’m smiling, smile with me. Ultimately, just let me be me, whatever that might mean today.

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 (NMOSD).


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