Disability invisibility and the loneliness of being overlooked with SMA

Throughout my life, I’ve experienced a certain kind of loneliness that comes from being surrounded by people. Conversations are happening all around me, and laughter fills the room. Everyone seems to be connected to one another, but I still feel invisible.

Let’s face it, though. There’s nothing invisible about living with spinal muscular atrophy (SMA). With one quick glance, someone will notice I’m small. They’ll see my clunky wheelchair and the braces on my feet. They’ll stare at a feeding tube taped to my face, which to my chagrin is quite the eyesore.

In other words, strangers notice my disability first. Yet, despite SMA being a very visible disability, there have been countless times when they act as though I’m not in plain sight at all. They’ll talk to the person next to me and won’t even make eye contact. It’s a strange contradiction to be the most noticeable person in the room and yet still somehow be overlooked.

I was recently reminded of this at a gathering with some girlfriends. Even though my friends loved and supported me throughout the night, the catering staff ignored me while engaging with everyone else. A few days later, I was at a festival in town talking with some friends. Another group approached us and greeted everyone but me. Unfortunately, it was too loud for me to take the initiative to introduce myself. Otherwise, I would have.

Recommended Reading

Sept. 18, 2026 News by Andrea Lobo

Mental health symptoms common in SMA patients, their caregivers

Feeling invisible

I don’t believe these people were trying to be intentionally rude. In fact, I understand if SMA leaves people unsure how to interact with me. They may not know if I’m verbal or how to communicate with me. They may wonder if I have a cognitive disability or if I need assistance. But while I understand their uncertainty, it’s hard for me to grasp why they use it as an excuse not to try at all.

That’s when it gets lonely, and I feel invisible, like I’m not worthy of being treated like my peers.

I’ve spent my entire life learning how to navigate a world that wasn’t necessarily designed with me in mind. I’ve taught myself how to advocate for my needs. I’ve learned to rise above my obstacles and cultivate a beautiful life despite the many challenges I face daily.

But what I haven’t learned is how to stop noticing when someone has decided I’m not worth engaging with.

I wish I could say these two interactions were isolated incidents, that I haven’t spent my life becoming accustomed to this kind of behavior. When I was younger, I remember wishing for the day when these experiences would hurt less, when they wouldn’t have the power to stay with me long after they happened.

Now that I’m older, I understand that, as much as I try to educate people and raise awareness about this topic, I’ll always encounter people who treat me this way. I can learn to brush them off and remind myself that their ignorance isn’t mine to carry. But at the end of the day, I’m human, and I just want to belong.

Note: SMA News Today 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. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.