Why Work Is Important to Me as an NMO Patient

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by Jennifer van Amerom |

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I am one of the few lucky ones who really enjoy what they do for a living, but that’s probably because I’ve taken control of my destiny. I am constantly reinventing myself and building the career I want. This became even more important after I was diagnosed with neuromyelitis optica (NMO) 12 years ago.

For the last 18 years, I have worked as a headhunter, pursuing mid-management to senior leadership talent in marketing.

Nine years ago, while on maternity leave, I looked down at my daughter and made a conscious decision. I want to be a role model to her and show her that despite the challenges in my life, I can be a leader. That’s when I started my own human resources consulting practice, and I’ve never looked back.

My consulting firm evolved into department and organizational structure, and then team and leadership training and development. And for the last couple of years, I have been teaching a coaching course part time at a postsecondary institution.

It hasn’t been easy operating as an entrepreneur, raising a young child, and managing an autoimmune condition that likes to flare at the most inopportune moments. I’ve lost my lunch in a public bathroom stall far too many times because my medication decided it wasn’t going to cooperate. Minutes later, I’m leading an important boardroom meeting or presenting to a large crowd at a conference. No one is the wiser, but those days are tough.

I sometimes feel like a fraud, dressed in a suit while my insides wreak havoc. I try not to feel lonely, being the only one who knows how much more effort I’m expending than everyone else to simply be there.

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Additionally, I try my best to be a supportive wife to my husband amid his demanding career, and I’ve added community involvement and advocacy work to my plate, too. I have been fortunate in my career to have been mentored by inspiring people, and I feel a responsibility to return the favor. This is how I also became a weekly contributor to Neuromyelitis News and the executive director of The Sumaira Foundation Canada.

If after reading this you’re feeling overwhelmed, that’s OK. I feel that way most days, too, but this is my normal. My doctors tell me to never slow down. They are convinced that working and staying busy have preoccupied my mind with goals other than surviving NMO.

There’s also a part of me that wants to accomplish as much as I can before it’s too late. I envision a goblin at the back of my brain with the quietest voice, constantly whispering that one day it will attack and shut down my existence.

New Year’s resolutions

Most of us take time to reflect on the past year and set resolutions for the year ahead. Every year I set good intentions, prioritizing my health. “I’ll get more regular bloodwork done. I’ll get more sleep. I’ll see my physiotherapist every week. I’ll eat more green vegetables.” I’m a bandwagon rider, jumping on and off the health wagon throughout the year. It’s tough to have such a restrictive and regimented lifestyle.

My advice to other NMO patients considering working this year? Consult with your doctor, then go for it. Employers are required by law in many countries to make accommodations for those with disabilities. If you can’t sit or stand for long periods of time, set a timer and take regular breaks. If your energy level falters throughout the day like mine, schedule in a nap and offset your hours. I work across various time zones, so a midday siesta works well for me.

Working gives me a sense of purpose, and more importantly, a greater identity than being an NMO patient. For me, it ultimately comes down to motivation. There’s so much life out there to live, but it’s up to us to decide how much and in what capacity we want to pursue it.

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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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