Difficulties with Nystagmus

I hope everyone had a great Labor Day weekend! I worked on Sunday :/

I’ve started interacting on the forum over at www.nystagmus.co.uk (check it out, it’s an awesome place with awesome people). Someone commented that my blog comes across as entirely positive, to which my reaction is…

GREAT!!  🙂  🙂 

I’m so glad because I think that too often a diagnosis of nystagmus comes along with a feeling of impending doom. Which is too bad because seriously, nystagmus takes up maybe 1% of my life, if that (although, with the blog I think about it a lot more now, but I digress…)

So yes, I’m very glad that it is coming across as positive. At the same time, I do want this blog to be realistic. Nystagmus does come with some difficulties. Low vision is frustrating. It is something that has to be accommodated. So here is my list of frustrating things about Nystagmus:

1. I can’t read menus.
Not the kind you put in front of you, but the kind that appear behind counters at sandwich shops and McDonalds. Usually I’ll ask whomever I am with to read it for me. If I’m by myself, then I just stand awkwardly close to the counter. So annoying…

2. Driving
As much as I hate to admit it, driving is an issue. I wax poetic about this topic much more in another post, but let’s just say, nystagmus does affect driving.

3. Sometimes it’s hard to look people in the eyes.
I can tell when people notice my eyes, and my first reaction is to not make them uncomfortable. This means avoiding eye contact. Eye contact is a very important social behavior that you probably don’t think about too much. By avoiding eye contact, people can get the idea that you aren’t confident, or even that you might be evasive or not trust worthy. That’s where we get the meaning behind my beloved phrase “shifty eyes” (though I’m determined to take that one back ♥ )

SO, people with nystagmus are often stuck with the dilemma of interrupting the pattern of a regular conversation by the other person being distracted by the nystagmus, or avoid direct eye contact and risk offending the other person. Can’t win…

_________________

There are other difficulties that come up from time to time, but these are the main things I struggle with.

But can I just say, these are mostly mild irritations. I know I sound like a broken record, but my life is seriously really really normal and great 🙂 Back to being entirely positive!

xoxo

Jo

Advertisements

5 thoughts on “Difficulties with Nystagmus

  1. cant c the words on blackboard, cant read signs. even worse, when i stare at some text or object in a distance for too long time, my head just start shaking (small shaking but noticable). i guess its trying to sync with my eyes. i cant even notice it myself and cant control. i dunt even know y!!!!! ppl will look at me with a ? and some1 will eventually ask qs that i hate to answer. its always the same damn qs “way?” “well, its not ur bloody business, so f off” sometimes i really wish i can just answer like that. o, did i mention i plan to get a driver’s license. i really wanna yell to the sky “why?!!!! is it some kind of mess up joke?”

  2. Oh my gosh, I was so grateful to find your blog! I was Googling around for a way to deal with the eye contact issue from nystagmus and your blog came up, so thank you so much for posting about these difficulties!

  3. Very pleased to find your blog. Was looking for something I had seen on the internet previously which simulated nystagmus – it’s hard for people to understand what I’m trying to explain – and found your blog from across the pond. Mine is acquired and I’m having a severe flare-up at the moment, to the point of nausea and problems walking…basically anything beyond horizontal with eyes closed. Best to you….

  4. Now that I vented a bit in my prior post… let me take a minute to take a step back and give some positive aspects of nystagmus… When I 1st met my husband, he could not stop looking at me… I thought it was because of the slight head tilt and he was starring at my eyes… but finally asked what in the world he was looking at… his response..”You’re so beautiful with your dancing eyes”… OMG…Dancing Eyes,,…I never thought that would ever come out of someone looking at me.. We’ve been together over 35 years. God blessed me with a man who loves my dancing eyes. 8)

  5. Hello!
    My name is Tiago, from Brazil. I’m 26 years old. I was searching for information about nystagmus when I came across with your page. I’ve been struggling to accept my nystagmus since my childhood. Your post really caught my attention because I’ve been going through the same situations for years but what really makes me feel upset is exactly the eye contact thing. I can keep some eye contact for 5 seconds and then I start feeling really uncomfortable and start looking at something else. I can’t feel self-confident and I have been wondering if this is the reason I have problems to approach to a girl, have some conversation and ask her out because eye contact is essential in these situations. Somehow nystagmus has affected my psychologically because in a childhood children used to make jokes and tease when the noticed that my eyes are not as normal as the other children’s. Actually nowadays the eyes movements have decreased, which makes my mystagmus almost unnoticeable. I believe that all I need is to read through all your post and collect some tips so that I can overcome my traumas and carry out a normal life. Thank you

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s