How attitudes toward me changed when my disabilities became visible

As a private person, I find it easier to have an invisible disability, despite the emotional toll of appearing “fine” while feeling far from it.

For years, I was able to privately manage my symptoms, and I wasn’t constantly asked if I needed help, which allowed me my independence. It’s difficult to articulate the symptoms of neuromyelitis optica spectrum disorder (NMOSD) when no one can see them, like when I’m seeking help at the emergency department. But with good communication, it’s possible to overcome this challenge.

This month, I suffered a transverse myelitis attack (the inflammation of both sides of one section of the spinal cord), resulting in new spinal lesions that have severely impacted my mobility. I now use a cane for balance, have gained weight from treatment with Solu-Medrol (methylprednisolone), and generally look unwell. It’s frustrating because I did everything right — I exercised regularly, ate well, got enough sleep, and was on top-tier NMOSD treatment. Yet, despite my efforts, I’ve had seven breakthrough attacks, and this temporary paralysis is now my recurring reality.

With a visible disability, my experience has shifted. I no longer have to explain as much as before to be believed, but I also can’t control when and how people engage with me about it. Strangers will offer unsolicited advice, assume I need assistance, or treat me differently — sometimes with kindness, sometimes with pity. While visibility brings some validation, it also strips me of privacy and autonomy in ways I wasn’t prepared for.

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Using a cane and gaining weight make it obvious that I’m fighting through something tough. People are kinder — they hold open doors for me, offer to carry my coffee, and constantly ask if I’m OK. While I know their intentions are good, the shift in behavior is a constant reminder of how sick I am.

The spasms in my legs make privacy impossible. Every time I stand and struggle, people notice. The extra attention makes me feel vulnerable.

Society seems to understand disability only when it’s visible. Since using a cane, I’ve encountered more empathy, pity, and patience. Even those closest to me have changed how they interact with me — offering more help, assisting with my jacket, and managing things at home without me asking. I’m deeply grateful for their support, but I also feel guilty for not being able to do as much.

No matter how much I want to push through, exhaustion and the lead-like feeling that has taken over my body always win. So, instead of fighting my limitations, I must learn to live with the guilt.

My self-perception hasn’t changed. I had NMOSD before the cane, and I still have it now, just with new mobility challenges. Everything else has changed, though. Walking, sitting up, and standing have become daily struggles, and now everyone knows I’m sick.

Before, I sometimes felt like I had to prove that NMOSD was a real disability, worthy of concern. When I disclosed my diagnosis, people were often surprised to learn what I had silently managed for 15 years.

In some ways, I still feel invisible, and not in a good way. Those who know what I’m going through sometimes hesitate to include me in activities. It’s another painful reminder of how much my reality has shifted.

This change in my status has forced me to realize that society needs to do better at recognizing both invisible and visible disabilities. The Hidden Disabilities Sunflower program is a great example of this. By wearing a sunflower, you’re signaling to those around you that you may need extra assistance or more patience because you’re managing an invisible disability.

Disability isn’t always something you can see, and even when you can, it doesn’t mean the experience is any more or less valid. The way people treat me now that my disability is visible has made me realize how much of our empathy is based on what we perceive rather than what we understand.

Accessibility isn’t just about physical accommodations; it’s about creating a culture where people don’t have to fight to be believed, included, or treated with dignity. Whether someone looks healthy or has a visible medical device, their experiences are real. Instead of assuming, ask. Instead of doubting, listen. True inclusivity starts with believing people the first time they tell you what they need.

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.