Does Battling Neuromyelitis Optica Make Us an Inspiration?

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by Jennifer van Amerom |

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The phrase “fake it till you make it” is meant to encourage self-confidence. During many tough moments in my life, like learning to walk again, I’ve relied on this phrase. There are moments when I don’t feel good, but I’ll fake it and say I feel fine. Sometimes saying how horrible I feel out loud makes me feel worse.

Lately, I’ve been wondering if my disability and circumstances make me an inspiration. It’s a term people like to use when describing me, or after they learn more about my battle with neuromyelitis optica (NMO). Yet I can’t shake this feeling that I’m a fraud. Maybe I’m suffering from some sort of medical impostor syndrome.

The act of inspiration

To me, the act of inspiration needs to start with intention. The rock climber sets out to climb a mountain face that no one has ever attempted. The doctor continues their research when others have given up. The patient starts a foundation when they find little or no information on the internet.

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I’ve always found it uncomfortable to be called inspiring simply for having NMO. I did not set out to have NMO. In fact, if given the choice, I’d vehemently decline it. I see my situation as survival. This was the hand I was dealt in the card game of life.

Making an impact

There are times when I can acknowledge to myself that I am fantastic, and in those moments, should someone find me inspiring, I can accept that.

No one expects me to work, not to the extent I have and continue to do. Working distracts me from my condition, but it also gives me an identity beyond being a patient. It’s difficult to balance long working hours with an unpredictable disorder. Headaches are frequent, and fatigue is a never-ending battle.

Maybe I should have secured a 9-to-5 job, but that’s not who I am. For the last 10 years, I have been an entrepreneur, which translates into long hours and being on call seven days a week. I’ve set out to build an empire as part of my survival strategy: make money, be self-sufficient, and support my family.

I like being an entrepreneur because it has given me a chance to employ people and make an impact in my community.

I’m particularly proud that very few in my professional world are aware that I have NMO. It’s not that I go out of my way to hide it, but I’ve always wanted to be evaluated on my performance and my personal merit; I don’t want to secure any business out of sympathy.

What if

The piece that gnaws at me daily is the “what if” scenario. What if I have another major attack and I’m hospitalized? What if I’m suddenly blind and can’t see anything? But thinking through those scenarios does nothing to help me in the present moment.

Instead, I focus on the “when it happens,” and I plan for those what-if scenarios as best I can. My plan is to get back up after I’m knocked down and keep going.

But that’s not inspiring to me. That’s just living life.


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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