Lost in Space: The Struggle of Body Awareness in NVLD, by Taylor

By July 4, 2023 July 5th, 2023 NVLD Bloggers

What are you doing right now?

Can you picture yourself? You can probably imagine the position of your limbs in relation to each other and the space around them. Your head. Your hands, feet, shoulders. Imagine yourself right now. Can you picture the look on your face? Can you visualize your posture, whether relaxed, tense, slumped down, or erect? Chances are, you know what you look like right now.

But imagine if you couldn’t.

What if you couldn’t tell the positions of your legs relative to your hips, your head, or your feet? Imagine if seated at your desk, you could not picture the shape of your own body. What if you were completely oblivious to your own body language?

Imagine now getting up that, as you stand, you are unable to judge how far away you were from the door, from the chair you just got up from, from the walls all around you. The picture that, as you move through space, you are completely incapable of imagining the shape your body takes as it moves through space. Imagine that you had no sense of your body’s relationship to the objects and people around you.

I suppose if I told you to imagine you were an octopus, with eight tentacles instead of arms, you would have just as easy a time. That is because our understanding of our own bodies is so ingrained in us, so tied to who we are, it is impossible to imagine what it would be like to not have that awareness. It’s one of the first things we learn.

But imagine if that feedback loop was broken. Imagine that, as you walk from your desk to the other end of the office, you are completely unaware of your posture, of how close or far you are from others as they walk past you. Imagine if, as someone is walking in your direction, you are unable to tell whether you’re on a collision course with them, or not knowing how far you have to move out of the way not to hit them.

I don’t expect you to be able to imagine this. Not fully anyway. As I said, the feeling of “being,”  of having a body grounded in space and in time- is so intrinsic to who we are, that imagining not having that sense of “being-ness” would be next to impossible.

But that is what it’s like to be me. And for other NVLD’ers, that’s what it’s like to be them too.

To not be aware of one’s own body is an alienating feeling. To not have that feedback loop of one’s own body language, is an alienating feeling. To now know where one’s body is in relationship to people and objects around them is an alienating feeling. In fact, it makes one feel a bit like an alien.

This is just one aspect of having NVLD, but it is a devastating one. To spend every waking moment feeling like a stranger in one’s body is traumatic, especially as we graduate from childhood to adolescence. When we’re children we’re cut some slack. But once we enter middle school children are expected to maintain appropriate spatial boundaries, to exhibit appropriate body language, and being unable to do so, often leads to conflict and misunderstanding. It also leads to bullying and ostracization from peers, teachers, and even family members.

NVLD is a multifaceted disorder. It impacts me in many ways, including socially, cognitively, and emotionally. But I just wanted to share my experience with the  “spatial issues” I face and what it feels like to spend a day inside my body.


I was diagnosed with NVLD at the age of twelve. As an adult, I hope the information I share will help others to not feel so alone.

Share your own story