How I practice patience so I don’t let NMOSD defeat me

I confront negative feelings with the help of family, therapy, and my own resolve

Jennifer van Amerom avatar

by Jennifer van Amerom |

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One of my greatest pet peeves since my diagnosis with neuromyelitis optica spectrum disorder (NMOSD) is when people tell me it’s OK to be sick. I don’t need their permission to be who I am. What they’re really saying, though, is that they expect me to be a victim of this disease, and I won’t be.

I do a daily check-in with myself to make sure I don’t feel defeated by NMOSD. I allow myself a few minutes to feel frustrated, sad, and angry, and to acknowledge my pain, but then it’s time to move on.

To be fair, those who point out to me that I’m sick would agree that I’m not at fault for it; after all, they see me as a victim. Yet from my experience over the past 14 years, there’s harm in accepting defeat. NMOSD patients may lack control over our bodies, but we still have our mental faculties, and they’re a powerful tool for survival.

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My solutions

When I feel defeat creep up in my life, I immediately request help from my family. That’s when we’ll go for a drive and get a scoop of ice cream, or we’ll go to the movies, selecting the recliner seats so I’m comfortable and have distractions for a few hours.

Other times when the defeat feels like a quiet nag, I’ll call my therapist. For years now, I’ve been practicing cognitive behavioral therapy (CBT). As my therapist and I do CBT, I’m required to write down any feelings throughout the day. At the end of the day, I circle the feeling that bothered me the most. In this case, it’s usually feeling defeated.

I then evaluate how that feeling has affected my actions and behavior that day, eliminating any irrational thoughts and feelings that come up. CBT has taught me how to be patient with myself and my feelings, especially during those times when I’m on steroids and unnecessarily angry at the smallest things.

While meditation has never worked for me, I’ve found other ways to overcome feeling defeated. My garden is my pride and joy because I’m growing vegetables from seeds, tending to them daily, and then receiving a bounty weeks later. As I fix the mulch around my garden, pull out weeds, and trim my rose bush, I’m giving myself time alone to reflect.

Lastly, every doctor I’ve worked with has always told me to keep moving. Most days, a walk is the best I can do, but on my good days, I’ll put on our virtual reality goggles and do some boxing. It always results in laughter, but without realizing it, I’ve done a workout and have sweated out that defeatist mentality.

I understand that it’s commonplace for NMOSD patients sometimes to feel defeated, but the biggest gain is what you do to get out of that feeling. And that’s a strength that no disease will ever get to take away.

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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