Speaking The Language Of Doctors: Becoming My Own NMOSD Expert

“Your labs look normal, and you seem like you are feeling better.” The paper beneath me crinkled as I shifted on the exam table, a lump forming in my throat. “I’m going to prescribe an antidepressant to help with this health anxiety you have been having.”

Health anxiety? Was this just another case of my theatrics? I rubbed my eyes to reassure myself of my symptoms. Still blurry and riddled with pain that spread from the depths of my brain, traveling throughout my body. Baffled by the response, a million questions flooded my already foggy brain.

When your NMOSD symptoms are dismissed

How could the pain be so real to me, yet nobody believed me? I had to wonder, were they doing this because they simply didn't know? Maybe the labs are missing something?

Many times in my journey, this is what appointments looked like. Months of antagonizing, waiting, and hoping were built up. Just for it all to end in more questions and anger than any solution or relief. “You haven't relapsed, so follow up with your primary care" and “you look like you're feeling better”.

Something was clearly wrong, yet no one took the time to understand. I was infuriated.

Having to educate my doctors about NMOSD

How can I educate a doctor on something happening inside me? I didn’t go to medical school. The constant dismissals shrank me. I chose silence over the sting of being unheard, avoiding the provider's gaze at every appointment. I felt like I was running into the same wall over and over again and expecting different results. I had to break this chain of insanity because the more my NMOSD symptoms increased, the fewer words I had to stand up for myself.

If they wouldn’t hear me as a patient, I would need to learn to speak to them like a physician. This shifted things, when I learned the standard medical terminology of my disease and presented my symptoms like a college thesis.

Now that I had made them hear me, they needed to see me too.

Why NMOSD patients need personalized care

It was a routine neurology visit. But when the neurologist sat down, I initiated the conversation. It was only fair that in this long-awaited 20-minute appointment, I had time to truly express how their gaslighting made me feel. I expressed that even though she was unsure of what was happening, there was an opportunity as a provider to learn more and find out.

I put a human before them instead of just another name on a chart. NMOSD is a rare diagnosis, and we must insist on unique care fit for us.

Becoming an NMOSD expert

I began to challenge answers that didn’t sit right with me, staying seated in an appointment until all of my complaints were heard. I never imagined I would need to become an NMOSD expert. I began to see the power in trusting my instincts and challenging the “your labs look normal” notion. I started bringing binders filled with logs, records, questions, appointment notes, and my mom as backup. I no longer walked in unprepared.

I was no longer going to allow medical providers to tell me how I'm feeling. I gained the confidence to challenge decisions and advocate for choices that were best for me. I could now lead with “That's not a decision I'm 100 percent confident with, and I would like to explore other options”.

I was persistent because my well-being and life depended on it.

The power of self-advocacy

For years after my diagnosis, I learned that this is not just a problem I’ve dealt with. Many diagnosed with NMOSD and other rare diseases are susceptible to not being heard when a majority of symptoms can be invisible to others. For us, our symptoms are very real. It's a fight to be truly believed. This experience is not just limited to me.

It was my ability to advocate for myself that put me on the path to being believed by the right physicians. That's the power of self-advocacy in the face of medical gaslighting.