In a word, No!
Or rather, if my life sucks, it’s for entirely different reasons. Like, I overdrew on my bank account (again) or my dog ate my shoes/Starbucks cup/box of chocolates that I thought was high enough up on the table but it turns out he can jump up there.
Now of course, I can only vouch for my own life. I’ve only very recently started to look for and read about other people who have Nystagmus (mostly through the internet), and I was seriously shocked to read how some people have had a really hard time coming to terms with their condition. I’ve given some thought to this, and have three things to say:
- Everyone has different experiences in life whether they have Nystagmus or not. Some people’s childhoods are more traumatic than others. And I’m pretty sure Junior High sucks for everyone. It may be easy to blame Nystagmus for many of life’s socially difficult situations.
- I’m lucky to live in a place where bullying is frowned upon and accpeting different kinds of people is taught at a very early age (thank you southern california). This isn’t true for everyone. I imagine life experiences really depend on what environment you are in.
- My Nystagmus is not as severe as others may be. Something that I did not know growing up is that there are many different types of eyes movements, some of which may be more noticeable than mine. Also, my null point is not particularly awkward; I look just slightly to the side. For other people who have either more intense eye movement or a more difficult null point, Nystagmus becomes a more visible condition, something that people will notice right away.
It may seem by looking on the internet that more people have a hard time with it than those whom it affects peripherally. My hope is that the majority of people with Nystagmus actually live normal lives, and the reason you can’t find those experiences online is because they have less need of support groups than those for whom it really is a challenge every day.
Now back to my life. Why didn’t it suck?
Growing up, my Nystagmus was a non-issue. Looking back, I think my parents did a FANTASTIC job of not letting me feel like I was different than anyone else. We didn’t ignore it: certainly every time I went to the eye doctor it was something that was addressed (mostly just her saying “no changes” and reminding me to relax while I read the E chart). My mom would pester me about using my null point too much (because I would often favor one eye, which was bad for the eyesight in the other eye, not because she didn’t want me to use my null point) but other than that, there wasn’t much of a need to talk about it. Really, the astigmatism that often comes with Nystagmus was more of an issue because I had to wear glasses, but astigmatism is very common. Other kids in my class had glasses for the same reason.
I don’t know if I just lucked out, but I have never not made a friend because of my shifty eyes. Certainly children are curious about things that are different, but because I never thought of it as a disease or something that made me a freak (thanks mom and dad), I just explained what it was when they asked, and that was about it. For the most part they thought it was pretty cool. Also, most of the time when people get to know me, they completely forget that I have it to the point where they don’t even see the movement.
Example: I went to elementary school with one girl for 9 years (k-8thgrade). She was a friend, and we grew up going to each other’s birthday parties. After grade school, we went to separate high schools, and I didn’t see her again for probably 5 or 6 years. Then, we ended up both working together at the same day-care center. It was great to see her again, and it’s always fun to work with people you know. We worked side by side all that summer. One day, one of our co-workers brought up my Nystagmus in a passing conversation. She then replied, “Oh yea, I totally forgot you had that!” Even after 5 years of not seeing me, and then working with me for a few months, she STILL didn’t notice my Nystagmus! And the movement never stops, so I know it’s not because my eyes didn’t move very much.
It’s a weird phenomenon, but it happens all the time. The people close to me totally forget that I even have it.
In reality, I myself hardly ever think about it. It’s just an accepted part of my life. My vision has always been the same, and I probably think about it as much as anyone thinks about their vision. My boyfriend has really sensitive eyes (they get very dry and red, especially when he is tired) though his vision is pretty much perfect. He thinks about his eyes more than I think about mine.
So yea. Life’s pretty normal for me.
Thank-you for providing me with some insight on living with nystagmus. My 16 month old daughter has mild nystagmus and I am definitely worried how the world will treat her. You just gave a little more faith in the world.
Great blog. I am a mother of a 6 year old here in Australia who has nystagmus. He’s doing well at school and is a very independent gorgeous boy. So heartening to read your experience. Wishing you all the best.
My daughtet of 6 months was just diagnosed with congenital nystagmus and immediately I scoured the net for more info. I greatly appreciate the opportunity to read about your life with nystagmus and how it hasn’t dampened your spirit. Thanks for the encouraging words!
Thank you so much for this! I myself am a 26 yr old mom dealing with nystagmus all of my life. I’ve had a pretty normal upbringing myself as well, with the exception of a few awkward moments And cruel ppl. I just had my 3rd baby boy who also has it and I find myself wondering how he’d get thru with it. This has reminded me that, it isn’t all that bad. Thanks And Bless you!