Windows to the soul in constant involuntary motion
September 20, 2009 4:54 PM   Subscribe

What do you see when you encounter someone with nystagmus?

I have nystagmus arising from ocular albinism. I realized recently that I'm shy about making eye contact with people, and I think this stems from self-consciousness about it. So, strangers and mefites, please tell me the honest truth. Do you even notice it when someone has nystagmus? If so, how does it register? Is it sorta creepy? My friends seldom comment on it. I know it's not a big deal for people I know. I'm wondering more about first impressions. Thanks.
posted by chrchr to Human Relations (27 answers total) 4 users marked this as a favorite
I've never seen nystagmus in person, but I imagine my response would probably be identical to when I see people whose two eyes point in different directions- basically, "oh shit, which eye am I supposed to look at? Please god don't let them notice that I notice their eye!"
posted by BuddhaInABucket at 4:56 PM on September 20, 2009

I've met a few people with nystagmus. I definitely noticed their eye movement upon first greeting but more in the sense of an internal dialog that goes something like, "Damn, you're tall. Oh, nystagmus, like Pruitt Taylor Vince, OK. Nice shirt, wonder where you got it." After that initial categorization, I don't notice at all and in any case it's not a big deal or even a little deal.
posted by jamaro at 5:08 PM on September 20, 2009

One of my best friends has nystagmus, and I would have never known if she hadn't pointed it out to me. It never bothered me, never thought it was creepy, or anything, really.
posted by pinky at 5:10 PM on September 20, 2009

There appear to be some videos on YouTube.
posted by ceri richard at 5:10 PM on September 20, 2009

Oh crap, I'm sorry chrchr, I only saw the first part of your question (tiny browser window) and thought you were researching the topic, having never met someone with the condition. My apologies.

As a child, an elderly neighbour of ours had nystagmus but what I remember most about her (apart from her huge collection of colourful aprons) was that she talked non-stop. Her eyes? Just another feature, can't remember finding it creepy or in any way offputting.
posted by ceri richard at 5:16 PM on September 20, 2009

I only notice when my friend is trying to read something (he is person with albinism). I have never noticed it in anyone else, but chances are, since I work with the public and have waves of students semester after semester, I have encountered other people with nystagmus. So I guess I don't notice or care.
posted by oflinkey at 5:23 PM on September 20, 2009

My friend's husband has this. I didn't notice it the first time I met him, really. Now I notice it but I don't think anything negative about it - she's told me he had a lot of vision problems as an infant. He's a nice guy, funny, smart and interesting to talk to. I don't really think too much about the eye thing. It's just part of him, like anything else. I just look him in the eye like I would anyone. It's not difficult.

As far as first impressions - it's not creepy at all. People come in all sorts of shapes with lots of variations. I'd find someone who's a blowhard, who's mean or arrogant to be a lot more off-putting than someone with this.
posted by Kangaroo at 5:28 PM on September 20, 2009

I've never met someone with it but the thing I immediately thought of when I saw the question is the "X-Files" episode "Unruhe", where it's definitely a sort of creepy character trait.
posted by emelenjr at 5:35 PM on September 20, 2009

I also know several people with nystagmus, and I certainly notice right away... but I certainly don't htink it's a big deal, or creepy, or anything like that...
posted by brainmouse at 5:41 PM on September 20, 2009

I worked for awhile with a guy who had this. About 30 seconds after I met him, it sort of faded into the background and I never really noticed it. It came up occasionally only in work situations - his vision wasn't that great and he had to get right up on the monitor to read stuff. We needed to get him a gigantic screen. So, yes, it's noticeable, but not for very long.
posted by jquinby at 5:44 PM on September 20, 2009

I have an acquaintance with nystagmus (or something similar). It's mildly disconcerting at first because it screws with my perception of where his attention is— you know how in casual conversation people will sometimes gesture with their gaze, or otherwise communicate with body language? With him, that signal is a lot noisier, and it takes a moment for me to accomodate. After that it fades into the background pretty rapidly, though. I don't find it offputting or creepy, but I do notice it.
posted by hattifattener at 6:06 PM on September 20, 2009

You don't freak out about my esotropia, I'll stay cool about your nystagmus, sound like a deal?
posted by fairytale of los angeles at 6:07 PM on September 20, 2009 [1 favorite]

My girlfriend knew two people who had it. Her high school physics teacher (who taught her for 3 years) had it, and one of her friends had it too. If her teacher hadn't mentioned that he had it, she thinks she wouldn't have noticed it for a a long time and he had a bad case of it. The only reason she noticed her friend had it was because she already knew what it was.

Even once she knew she never paid any attention to it, unless they brought it up. It was totally a non-issue in both circumstances.

Personally, I don't think I've known anyone with it, but I might have and never noticed. I have a friend with a lazy eye and it took me literally years (at least 5, maybe more) to realize. My girlfriend has known him for a couple of years now and didn't realize it until I mentioned it just now.

Personality and attitude matter far more than any physical strength or flaw. I've seen people that were absolutely beautiful that no one liked because of their attitude and people with all kinds of noticeable flaws that were adored by everyone (even people that just met them) simply because of their personality.

I've also known people who had everything going for them, that were incredibly insecure for some minor weakness. The one that jumps to mind was a guy that I knew that was really good looking that just about didn't date because he felt that women would think he wasn't worth their time because he didn't have a lot of money. It was all in his head. I'd hear girls drooling about him all the time, but he would never date a girl that wasn't seriously flawed because he didn't think he was worth their time.
posted by thekiltedwonder at 6:12 PM on September 20, 2009

From another direction: I don't think it's horrible if people don't make eye contact with me. I assume they're shy, but that's far from the worst thing to think about someone.
posted by rokusan at 6:17 PM on September 20, 2009

A former co-worker had nystagmus along with strabismus (in which the eyes aren't aligned properly). He moved his head side-to-side constantly, in rhythm with his eyes. I'd never met anyone with either condition prior to that, but it didn't seem creepy, just unusual. The nystagmus quickly became just another feature of this guy, but the strabismus required a little concentration ("OK, figure out which eye is pointing at me, and look him in that one"). Not at all creepy - more like having to make a little effort to understand somebody's accent, but once you're locked and tracking you don't even think about it any more.
posted by Quietgal at 6:31 PM on September 20, 2009

I've known people who had it, but I didn't know what it was called until I read this AskMe.

I definitely notice it. How I react depends on context and the person's appearance, demeanor, and behavior. Unfortunately, a lot of crazy/drunk/high beggars have similar jerky, unfocused eye movements, so my initial reaction to someone with twitchy eyes is caution. But if I'm meeting someone in a professional setting, they're dressed and groomed normally, and otherwise behave and talk in a non-crazy/drunk/high way, then I quickly realize that they just have some sort of twitchy eye disorder and I relax.

After that, it's only mildly distracting, as any other disability or deformity would be. It doesn't make me uncomfortable, but a small part of my brain constantly notices it, similar to how I would constantly notice a missing limb (or even something small like someone having a big zit on their face that day).

I don't judge someone for having it, and if I interacted with the person frequently I would probably stop seeing it after a while -- like, although I KNOW that I know people who have this, right now I'm having a hard time remembering exactly who. So it's something I definitely notice in the moment, but it doesn't register in my memory as one of that person's defining characteristics.

The only advice I can offer for first impressions is to make sure you're always dressed and groomed appropriately for the situation (which you should be doing anyway if you want to make a good first impression). That should go a long way towards overcoming the association between twitchy eyes and mental disturbance.
posted by Jacqueline at 6:36 PM on September 20, 2009

I had a terrific professor who had this, or something functionally the same. Eyes in constant motion while he lectured. It was definitely noticeable after interacting with him for a few classes. (Small classes, where a few students are around a table; it would not be noticeable in a big lecture room.)

I think it's natural that someone meeting him for the first time goes through a flowchart of questions trying to get a sense of what's up: "so his eyes are moving constantly, is that normal for him? Ok, seems to be continuing, so there must be some underlying thing... Does this mean he's blind? Nope, doesn't seem to be blind.... He doesn't make eye contact, so I need to decide whether I should make eye contact in return, and if not, where should I look?" But none of those questions are judgmental, they're just sussing out the practical upshot for the interaction.

Beyond that, the only impression comes from your personality and the rest of how you present yourself. He was an excellent and much beloved professor, certainly I never knew any students who said anything about the eye thing even when they talked about his lecturing style or great sense of humor etc.
posted by LobsterMitten at 6:53 PM on September 20, 2009

My doctor has this, he points it out and explains it the first time he consults with new patients. Might be a good strategy if you're going to be talking to someone for a while, like in a job interview. His spiel goes like this:

"You might have noticed that I'm not facing you directly, I have nystagmus, a condition where my eyes move rapidly, as well as some vision loss. Holding my head like this makes it easier for me to look at you."
posted by kathrineg at 6:54 PM on September 20, 2009

Looking at those Youtube videos, the eye movements of my professor were much more pronounced. In his case they eyes would not stay in basically one position and vibrate, they would be looking up-right then down-left, etc - bigger movements. I wonder now if what he had was a different condition? I wonder if some of that may have come from moving his eyes semi-voluntarily to avoid eye contact.

The movements in those Youtube videos would be much less noticeable, I think.
posted by LobsterMitten at 7:05 PM on September 20, 2009

Flute player James Galway is maybe the most famous person with it. Since UK folk of my age were introduced to him early on, it's always struck me as a kindly, avuncular trait - coupled with a perhaps unfortunate tendency to break out into Annie's Song at short notice.
posted by scruss at 7:05 PM on September 20, 2009

the first man in this video has bigger movements like the ones I'm thinking of.
posted by LobsterMitten at 7:10 PM on September 20, 2009

My friend has it, and because she also wears thick frames, I never noticed it until we lived together and I noticed her watching tv sideways. Once I did notice it, It didn't make me weirded out when I talked to her. The situation was sort of, "Why do you watch tv sideways? I've never noticed it?"
"I have a condition that makes my eyes shake. I can see better this way."
"I've never noticed that before."
"Do you want to see?"

She proceeded to stand in front of me and show me. I don't think I've met anyone else with the condition, but I'm not gigantic on eye contact, so it's possible I've never noticed. I think I would process it as a character trait and move on. I agree with kathrineg's doctor, in that any tick, condition, or thing about you that you are self -conscious about, it can help to point it out at the beginning and make it a non-issue.
posted by itsonreserve at 7:38 PM on September 20, 2009

Response by poster: I just watched the youtube videos, and my condition is much milder than any of them. In fact, I made a little video of my own, and I could barely see my eyes moving at all. So there.

I know I don't need to be self-conscious about it. It should make it a lot easier for me to get past now that I've got some indication that people probably don't even notice it right away. It was more pronounced when I was a kid, and other kids would ask me "Why do your eyes do that?" You can understand how I could have become a little self-conscious.

The article I linked mentions odd head positions that those with nystagmus sometimes adopt, and some of you made reference to that. I wasn't aware of that until I read that article. I know I do that when I look at something up close. Sometimes when I'm reading I even close one eye and cock my head. I don't do that when looking at people. I don't think I have that particular issue.

All of these answers are so great, I'm not going to mark any of them as best answer, because I don't want to play favorites. Thanks everyone for your interesting contributions.
posted by chrchr at 9:59 PM on September 20, 2009 [1 favorite]

Wow, I knew someone who had this. I never asked her about it because I felt like it would be awkward. She didn't do it all the time, though. This may sound strange but it seemed to come out more when she was drinking.

I don't remember anybody else talking about it, so it couldn't have been too disturbing. I didn't feel disturbed by it anyway. I didn't even notice it until I'd known her for a while. I certainly never avoided eye contact with her -- my god, what a horrible thing to do!

Anyway, I'm glad to know the name for this.
posted by Afroblanco at 10:39 PM on September 20, 2009

I'm glad I learned the name for this too! I knew two people in college who must have had it - their eyes were slightly but constantly shaking side to side. It took me a while to even notice it in either of them, and then I thought, "hmm, I guess they have some sort of condition that makes their eyes shake like that. I wonder how it feels. Looks like they can see okay, so I'll assume they're healthy" and then didn't really give it much more thought.
posted by Metroid Baby at 5:42 AM on September 21, 2009

I work with someone who I'd guess has a severe case? Most conversations are face to face, close contact, or me working with him at a desk to explain or teach something. It takes a second to concentrate on his 'good' eye, but other than that not a problem. It is only difficult when teaching something because I rely heavily on body language and eye contact to read if someone is understanding or not. I have to change a bit to communicate with him.
posted by variella at 7:06 AM on September 21, 2009

Oh, hi chrchr! As someone that's met you in real life, I can say that I didn't notice it at all. At least, not enough to make an impression.

I've met other people with it, and (not knowing what it was until I watched the youtube videos above), just thought they were searching my face. To me they looked like they were just interested in the conversation. They might've adjusted other parts of their facial features to make it look more like that, though.
posted by Laen at 5:28 PM on September 22, 2009

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