Here’s how to explain neuromyelitis optica spectrum disorder

This is part of a series about neuromyelitis optica for NMO Awareness Month. Go here to read more.

It can be difficult to explain neuromyelitis optica spectrum disorder (NMOSD) to those who are unfamiliar with the condition. As patients, we try to lessen the harsh reality by using language like “rare” and “unicorn,” but having an unknown disorder is challenging — especially when we need and want others to understand what we’re dealing with.

Many people with NMOSD find it frustrating that they need to explain their condition during a crisis, such as when visiting the emergency department. They report, on a regular occurrence, having to deal with nursing and on-call practitioners who have never heard of the disorder.

When you’re facing a health crisis like a potential attack, time is of the essence or it can lead to problematic, long-term effects. The less time spent explaining NMOSD, the sooner treatment can begin.

Unless you require workplace accommodations, you don’t have to share that you have NMOSD, or any other disability, with your employer. However, just because you choose to voluntarily disclose your condition doesn’t make the conversation any easier to have.

Sometimes, explaining how NMOSD affects your life to others, such as to family, friends, coworkers, and even strangers, can be exhausting. Especially when NMOSD presents itself as an invisible disability, so others might not comprehend the severity of the disorder. Society tends to be more sympathetic when they can see illness, since visibility brings some validation.

Explaining NMOSD may be difficult, but it’s not impossible

Trying to figure out how to describe NMOSD can truly take an emotional toll. But having a few clear, concise explanations ready and waiting for different scenarios can help you communicate effectively while minimizing your stress

Medical emergency (for example, at the emergency room): “I have NMOSD, a rare autoimmune disease that attacks my nervous system. It’s like MS, but not the same. I’m suffering from an attack right now and urgently need treatment, please, which is usually steroids — any delay could lead to permanent damage. You can check my medical history to see how my past attacks were managed.”

Workplace or similar professional setting: “I have NMOSD, a rare neurological disorder that can affect my vision, mobility, and even sometimes my energy. While I’ve gotten good at listening to my body so it doesn’t interrupt my work responsibilities, at times I might need accommodations.”

Social situations (such as with friends, family, or curious strangers): “Are you familiar with MS? I have NMOSD, which can look and feel the same but is a different autoimmune disorder. It can lead to paralysis, vision loss, and serious pain, so I try to manage it with treatment. But I still have some tough days.”

When setting boundaries (i.e., if someone is being dismissive or insensitive): “NMOSD is a serious autoimmune disease that attacks my nervous system, causing unpredictable symptoms. I don’t always have the energy to explain it in detail, but I do appreciate your understanding.”

When you need to be brief: “NMOSD is a rare autoimmune disease that attacks the nervous system, particularly the optic nerves and spinal cord, causing vision loss, paralysis, and severe pain.”

Even if it seems so at first, explaining NMOSD isn’t impossible. By having a few go-to responses for different situations, you will be able to communicate effectively without feeling overwhelmed.

Whether you’re in a medical emergency, a workplace discussion, or a casual conversation, tailoring your explanation to your audience can help you advocate for yourself while preserving your much-needed energy.

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 provider 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.