The NMO Learning Curve
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.
Were you misdiagnosed, prior to being diagnosed with NMOSD?