Navigating NMOSD at the intersection of culture and family
Explaining a rare disease can sometimes be challenging due to culture
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When I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), my greatest frustration wasn’t my inability to walk, the numerous tests and MRI scans, or even the number of needles. It was trying to articulate the severity of this disorder to my parents.
My parents were both Indonesian, raised in a Dutch colony on the islands before moving first to the Netherlands, and then to Canada, where they started a family. I didn’t grow up thinking about disability through a cultural lens. I simply thought it was something that existed in the body, not in the social fabric around it. But when NMOSD entered my life, I realized my Western upbringing was vastly different from that of my parents, specifically how culture shapes the way disability is understood, accepted, and even diagnosed.
How culture understands illness
NMOSD is already a rare disease, so explaining it feels like giving a TED Talk that no one signed up for. But cultural background makes that explanation even more complicated for me.
In some cultures, illness is only real if it’s visible. If you’re not limping, bleeding, or dramatically clutching your chest, people assume you’re fine. Invisible disabilities like NMOSD don’t fit neatly into those frameworks, and I have found myself in conversations where people tilt their heads and say, “But you look OK.” Some folks even struggle to understand that there was no major disturbance to my body, like head trauma, that would cause a neurological disease.
At the same time, many of my friends and their families understand my illness, blending physical, emotional, and spiritual experiences. I’m thankful they grasp the seriousness of NMOSD more quickly, even if they can’t remember its name.
Culture can sometimes shape comprehension in ways that either validate experience or make you feel like you’re constantly proving that you’re sick.
When culture doesn’t accept illness
I have heard that some Indonesians believe disease or disability can be caused by black magic or evil spirits, leading people to avoid the sick out of fear they might be next. As someone who has Indonesian roots but was raised in North America, that breaks my heart. I can only imagine how isolating it is for people who did nothing to deserve being rejected or cast out by their families.
My Dutch roots add another layer that encourages stoicism. It’s never explicitly stated, but there’s an expectation to push through, stay quiet, and avoid burdening others. My family often used a Dutch-Flemish phrase, “Mooie bloemen buiten doen,” which they said means, “Put nice flowers outside.” Growing up, we said this phrase to each other as a way to remind ourselves to keep the outside of our home looking perfect even if the inside was falling apart. We kept any messy parts of our lives private.
Living with NMOSD, this combination sometimes feels like emotional self‑suffocation. I minimize symptoms, hide pain, and pretend I’m fine because that’s what I was taught.
But North America offers a different model. Here, community support is encouraged. Disability becomes something shared, not hidden. Vulnerability isn’t seen as failure. Acceptance also varies widely. Some families rally around you. Others avoid the topic, as if silence will make it disappear. Some treat you as fragile; others treat you as inspirational.
Culture doesn’t just shape how people respond to your disability — it shapes how you learn to respond to it yourself.
When prevalence shapes perception
NMOSD is more prevalent in parts of Asia than in North America. In East Asia, the rate sits around 3.5 per 100,000, while in North America it ranges from 0.5 to 4 per 100,000 depending on the population. These numbers may seem small, but they influence how people comprehend and accept the disease.
When a condition appears more frequently in a region, people tend to recognize it. They may know someone who has it, understand the symptoms, or at least have heard the name before. Familiarity doesn’t guarantee compassion, but it does create a baseline of awareness.
In North America, where NMOSD is less common, people often have no reference point. Rarity creates a comprehension gap. If people can’t picture the illness, they struggle to grasp its seriousness.
Acceptance follows the same pattern. In places where NMOSD is more visible, people may be more willing to acknowledge it, even if cultural beliefs complicate the emotional response. In places where it’s rare, acceptance can be fragile. People question the diagnosis, minimize symptoms, or treat the disease as something abstract rather than lived.
Prevalence shapes comprehension. Culture shapes acceptance. Together, they shape the lived experience of disability and the way each of us learns to carry it.
I’ve learned that disability doesn’t exist in a vacuum. It exists in families, communities, traditions, expectations, and unspoken rules. Culture shapes the conversations we have, the support we receive, the stigma we face, and the care we access. It shapes whether people believe us. It shapes whether we believe ourselves. And it shapes how we navigate a disease that already demands so much.
Note: 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 providers 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. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.
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