How a Lack of Understanding About NMO Affects My Mental Health

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by Jennifer van Amerom |

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Feeling misunderstood is one of the biggest challenges I face with neuromyelitis optica (NMO).

This week, we took our daughter sledding with a couple of friends. Sledding is a Canadian rite of passage, though I’ll admit it feels dangerous most of the time. Our brave 9-year-old, prepared with a helmet, couldn’t wait to tackle the largest hill in Toronto.

We’ve gotten quite a bit of snow this week, but by the time several other families had tackled the hill, the fluffy powder had turned into patches of death-defying ice. Seeing this, my husband turned to me and said quietly, “You shouldn’t go down.” I nodded in resignation.

Shortly after, one of our friends asked if I was taking a turn. When I declined, she said, “Come on! It’s so much fun! Don’t be scared!”

Here’s the thing: I enjoy fast rides, roller coasters, and anything that gets my adrenaline going. However, my body doesn’t agree with me anymore. One bad fall off the toboggan will lead to days of back spasms, sleepless nights, and additional pain. Yes, I still snowboard, but I have more control over my board than I do with a sled.

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Living with an invisible disability means that most people don’t see or understand my challenges. I could explain to our friend that the bumpy sled ride will cause inflammation around my spine, but doing so feels depressing. Instead, I’m the fearful parent politely cheering from the top of the hill.

Even if friends or family members know about my poor health, it can be difficult for them to truly understand the unique risks I face and the chronic nature of my illness. This is an upsetting and isolating experience.

Today is Bell Let’s Talk Day in Canada. The campaign focuses on raising awareness of mental health and encourages people to support one another. While mental health issues can affect anyone, autoimmune patients are often likely to struggle with feeling lonely and misunderstood.

I have long advocated for mental health to be a priority for everyone, but especially for patients like me who must navigate complex emotions throughout our medical journeys.

For the first few years after my NMO diagnosis, I suffered from depression as I mourned the loss of my identity. I didn’t know it at the time, and I don’t think others noticed, either. I was great at plastering a smile on my face and adopting a brave persona, but eventually, I started to struggle. I complained about the number of pills I had to take every day, or how my specialist didn’t truly understand what I was going through, and I was irritable and irrational about things that never bothered me before.

Luckily, I was brave enough to bring this up with one of my physicians during a checkup. “It’s about time we talk about your mental health,” they said. I was relieved, but also a little angry. In a perfect world, patients should automatically be referred to a mental health professional after receiving a diagnosis. I wish our society was more proactive in this regard.

A study published in JAMA Psychiatry in 2018 found that depression can worsen autoimmune symptoms. My clinicians have always warned me that stress can impact my physical health, and I know they’re right. I’ve tested the theory more times than I probably should have. So, it stands to reason that depression, anxiety, or any other mental health challenge could worsen my condition.

mental health | Neuromyelitis News | Jennifer sits on a lounge chair on the beach in Mexico wearing a bathing suit and a floppy hat. Her daughter is standing next to her and giving her a kiss on the cheek.

Jennifer and her daughter, Sophie, on vacation in Mexico, in 2015. (Photo by Mike Drolet)

Over the years, I’ve made my mental health a priority. Although vacationing can feel like an expense, it’s worth it when we need to recharge. I’ve also invested in a great meditation pillow, which doubles as a nap spot for my dog. I sit on it quietly for five minutes a day and focus on my breathing.

Many techniques can help us improve our mental health and center ourselves, including having open and honest conversations with loved ones. Continue investing in yourself until you find what works for you.

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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