The Benefits of Reinventing Yourself After an NMO Diagnosis

A columnist shares tips for adjusting to life with the disease

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by Jennifer van Amerom |

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The phoenix is my spirit animal. Out of the ashes it rises, and a new self is born.

That’s how I felt after my neuromyelitis optica (NMO) diagnosis, and it’s how I feel every time something changes with this disease. Reinvention is important to my survival, both physically and mentally.

Life isn’t linear

I recently attended a charity event with my husband, who ran into several university acquaintances from 20 years ago. As we listened to their life stories, I was reminded that we all face challenges. I observed that those who seemed happier had done the work to reinvent themselves.

I believe it’s important to know who you are and what you believe in. There isn’t any harm in making a life plan, such as deciding which career you’re interested in and whether you want children.

But life isn’t linear, especially when we’re faced with illness. It isn’t healthy to stress about timelines. Rather, focus on the goal and how you might get there now. What adjustments need to be made to achieve the goal?

I’m reminded of my friends who insisted they be married with kids by a certain age, only to still be single and frustrated with the dating world. I encourage them to stop stressing about the timeline and instead enjoy the process of dating.

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Moving Forward After an NMO Diagnosis

Why reinvent?

Oxford Languages defines reinvention as “the action or process through which something is changed so much that it appears to be entirely new.” That’s the beauty of reinvention — nothing is actually new. We can’t change our bodies and the illness we’re afflicted with. We can’t change how NMO affects us.

But what we can change is how things appear. We can choose to let this disease take away our happiness and joy and turn us into victims, or we can choose to adjust, live with the disease, and reinvent ourselves.

Reinvention isn’t about ignoring reality. Living with NMO is tough and, on some days, defeating. I tell my daughter all the time that it’s OK to have a bad day. The human spirit is resilient. It can bounce back and learn from our defeat the day before.

The process of reinvention

So how does one begin to reinvent themselves after NMO?

Start with a list of life goals. If you don’t have that list, start with a list of interests and hobbies. For example, perhaps you have a goal of finishing a university degree. Researchers and clinicians know that NMO can cause fatigue and a shortened attention span. So instead of taking on a full course load, why not take an extra year to complete the degree?

There are resources you can utilize, depending on what your goal is. If you’re pursuing education, speak with the curriculum development specialists at the school you plan to attend. If you want to have children, speak with a fertility specialist about your condition. If you’re pursuing a certain career, consider asking for an information interview with someone already in the field.

How have you reinvented yourself with NMO? Please share in the comments below.

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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