An Advocate Was Born
Last updated: June 2023
In May 2016, I received my NMO diagnosis over the phone. “You have something called neuromyelitis optica, and we must treat you immediately.” I was confused, and I thought it was a joke. It felt like it was an incorrect way of delivering this news, especially news that would affect me so much. I didn’t believe it.
The first time I Googled "NMO"
Then, they proceeded by saying, “We will speak more on this when you come in, but in the meantime, google some information on NMO.” I went on Google to look for more information. Google said I would die in 5 years. I gave up looking for more information on my own.
Learning about NMO from my doctor, in person
In my next in-person appointment, my doctor explained NMO a bit more to me, but I didn't really understand its significance or the impact it would have on me.
Reviewing my MRI
The doctor showed me my MRI results on the computer screen, describing the longitude of the lesion. He explained how it differs from Multiple Sclerosis. Also, he told me why he believed it was NMO and not MS.
I asked so many questions because, clearly, my profession was nowhere near the medical field. I could tell the doctor was getting annoyed by my frequent interruptions of questions. He told me I must start on rituximab and a round of prednisone through IV.
In NMO denial
I was in denial. I even suggested that my doctor received the wrong test results, perhaps from another patient. What was going on? How do I go from being a healthy being to needing chemotherapy drugs in a matter of weeks?
Fear took over
Please understand that for someone like me, who at the time had never frequented the hospitals, let alone an infusion room (otherwise called a cancer center), this was SCARY! I honestly didn’t believe anything that was going on.
But during this time in my life, the advocate in me was born.
An NMO advocate is born
Unknowingly, I became more confident in my journey by questioning everything. I learned my rights as a patient and understood that I was the walking paycheck for doctors and hospitals. I called other neurologist offices for 2nd, 3rd, 4th, and even 5th opinions.
The cost of self-advocating
I underwent more testing, including a painful spinal tap procedure. All but one agreed that this, in fact, was Neuromyelitis Optica. The other doctor said it could have been a one-time occurrence of transverse myelitis.
There was an unreal amount of emotions I overcame at the time. I felt I was left alone in a moment where a team of medical professionals should have grabbed my hand and guided me through this process. I was just told what to do, but as scared as I was, I could only nod my head yes.
Where were the people who were supposed to help me?
Why weren’t counselors offered to me during this critical time of change in my life? I’ve always thought about this part of my diagnosis. No matter how big or small the diagnosis, this is a big change in someone’s life. Just getting a simple diagnosis is not enough.
This is all new to me. How can I be expected to fend for myself without the correct tools?
Fending for myself as my own NMO advocate
Let’s be real. As useful as Google can sometimes be, it's not always reliable. My medical team should have provided me with more guidance. Even though I tried to ask for help or guidance, it seemed like my requests were not monetarily beneficial for them to point me in whatever that direction was.
We, the patients, deserve guidance in the correct direction for productive and educational conversations. I did not know what to expect for my future. Was I going to die in 5 years, as Google indicated? The beginning of my NMO journey was a scary one, and there were not many resources.
I knew - for sure - the fighter in me was coming out, and an NMO advocate was born.
Has NMO impacted your ability to keep a job?