The NMO Learning Curve

By Chelsey Tucker

3 min read

There is a seemingly never-ending learning curve that goes hand in hand with an NMO diagnosis. One of the most difficult aspects of living with NMO has been the process of accepting my life as it is today, grieving what I thought my life would look like before I got sick, and continuing to live the best life I can despite the challenges I face daily.

How my life has changed with NMO

New attacks alter my life in a different way than they ever have before and finding my “new normal” isn’t as easy for me as it was in the beginning. I’d be lying if I said that this disease hasn’t turned my world upside down a time or two. I wish I could say the hardest part of living with NMO is living with NMO, but that has not been my experience. Equally as challenging as living with NMO has been the drastic change in dynamic between myself and nearly every medical provider I’ve encountered since being diagnosed.

I find myself educating medical professionals

Up until NMO came into my life, I had never been tasked with educating a physician about anything medically related. I always thought it was the responsibility of the degree-holding medical professional to do all the educating and not the other way around. But time and again, the rarity of NMO has made it impossible for me to seek medical attention without first educating and answering the questions of the medical professionals overseeing my care. For many physicians, I’m the first patient they’ve ever treated with NMO, and it’s likely I’ll be the last.

NMO is unknown to so many

When I was first diagnosed with NMO, I was stunned to learn that a disease that had completely wrecked my life was essentially unknown to most of the providers overseeing my care. NMO is my reality, so I tend to forget about its rarity until I’m face to face with a doctor who has no idea what I’m talking about. It can feel unsettling to know more about a disease than your own doctor does, but this is a prime example of the learning curve that comes with NMO. I am no longer “just” a patient.

Knowledge equals power

The notion that I would be responsible for pulling double duty as both the patient and educator to physicians and medical professionals, prompted me to immerse myself in all things NMO. My neurologist was also integral to the learning process as he made suggestions about the language I should use to accurately relay information about NMO to a physician unfamiliar with this disease. The knowledge I obtained from my own research, coupled with the invaluable knowledge my neurologist offered to me, has allowed me to feel empowered in situations where I would otherwise feel incapable of advocating for my care.

What I’ve come to realize is that NMO is like an invisible stranger that tags along with me everywhere I go. Instead of expecting specialists and emergency room physicians to already know who and what NMO is, I anticipate that I’ll be making an introduction. Don’t get me wrong, just because I can hold my own in conversations with degree-holding medical professionals does NOT make the NMO introduction process easy by any stretch. Appointments that should be seemingly straightforward, are easily complicated by the nuances that NMO creates. With NMO, nothing is easyTrips to the emergency room during an NMO attack have further proven that “easy” and “straightforward” can’t exist in the world of NMO. Sometimes going to the emergency room feels more stressful than an NMO attack itself. Traumatic hospital experiences have played a large role in the trepidation and stress that I associate with emergency care. Doctors who hurt more than help add a tragic layer to the NMO learning curve that I wish was non-existent. Sadly, I know I’m not alone in my pain. Many NMO patients have experienced similar or worse.You'll always be your own best advocateIf you take nothing else from my words, please believe me when I say that you will always be your own best advocate. Nobody is going to care more about your health than you do. Get to know NMO and take time to educate yourself about your treatment options. Talk with your treatment team about how to navigate situations that require you to introduce NMO to a doctor overseeing your care. Ask as many questions as needed. Get in touch with your body, trust your instincts, and relentlessly pursue the best care available to you.The NMO learning curve is steep. Be sure the information you are consuming about NMO is accurate and up to date. Some of my favorite NMO websites are listed below:Neuromyelitis Optica Health Info and CommunityThe Sumaira FoundationConnor B. Judge FoundationThe Guthy-Jackson Charitable Foundation(guthyjacksonfoundation.org) What have you had to teach your doctors about NMO?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Neuromyelitis-Optica.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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