New insights from my 15 years with NMOSD

September marked 15 years since I was first affected by neuromyelitis optica spectrum disorder (NMOSD). The specific day came and went, but it wasn’t until this past week, while I was sitting on the beach in Cancún, Mexico, that I took a moment to process the past decade and a half of my life.

Jennifer’s favorite spot: Bali beds by the beach at Margaritaville Island Reserve in Cancún, Mexico, where she contemplated her NMOSD journey. (Photo by Jennifer van Amerom)

The beach is my favorite spot in the entire world. As I was lying there on a Bali bed, my feet dangling off the side and my toes playing in the white sand, I loved looking out into the ocean, feeling the breeze with that distinct smell of clean air. As I watched the small waves hit the beach, I was reminded of the ocean’s power; it could pick me up and swallow me whole.

I’m insignificant in that context, and so is my disease. I have to work hard to make a difference, and I hope I’ve been doing enough as a patient advocate to do just that.

If I could go back to the start of my NMOSD journey, what would I do differently?

To begin, I wouldn’t have judged myself so harshly. I earned stretch marks early on from the oral corticosteroids and the rapid weight gain they helped cause, which made me hate my body. I continue to look at it with disgust, no matter how much weight I lose, how strong I feel, or how much positive feedback I receive.

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I placed unrealistic expectations on myself to bounce back quickly, instead of focusing on the gifts my body did give me, like healing itself or carrying my daughter to full term in a successful pregnancy.

I also wouldn’t have rushed to pack in as much life as I could. When I was diagnosed with NMOSD, every resource I saw online said the average patient lived for five years. That caused me to panic, and I worried so much about how much time I had that I pushed myself professionally, physically, and mentally. This effort caused me to make a lot of mistakes, including some with an impact that I’m still paying for.

This panic also caused me to push for a version of perfect that’s only in my mind: the perfect wife, mother, entrepreneur, friend, daughter, and ultimately patient, the last so I could be all those other roles. I know now that no one expects me to be perfect in any of those roles, especially while being sick.

If there were do-overs …

I wish I’d had my current insight when I began this journey. I now realize that material things are nice, but I value the memories more. I’d focus more on building experiences because as this disease takes over, it’s getting harder to do such things as take big hikes or even to see as clearly.

One thing I’ve done a lot over the past 15 years is deny how sick I’ve been. I’ve downplayed NMOSD because I never wanted my loved ones to worry about me, and I didn’t want my professional network to think I wasn’t as capable as the next person. But that forced me to hide my true self and my struggles.

I thought it was about not being a victim or a constant complainer, but when my NMOSD symptoms were difficult, I couldn’t be honest with anyone, including myself. The truth is that I’ve been scared this entire time, and I’ve worried every single day that it’ll be my last. That isn’t being a victim; that’s surviving.

I wouldn’t have tried to be so brave all the time. I’d cry more and let people in, because now it feels too late. And living with this disease is so hard. I still haven’t figured out how to talk about it, and I don’t know if I’ll ever have the words to express the horrible situations I’ve endured.

And lastly, I’d have spent more time telling those I love how much they mean to me and the positive impact they’ve had in my life. I may not have been honest about NMOSD all of the time, but that doesn’t mean that those around me weren’t able to see it and still choose to be there for me. For that I’m grateful, and if I could go back in time, I’d say thank you more often.

Living with NMOSD for 15 years has been debilitating at times. If I could give my younger self advice, it’d be to focus on my mental health. I wouldn’t have forced myself to be so brave, so I could’ve found better tools to manage my disease and 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.