Coping with Nystagmus

[Ambzsie]

Hello,

I am a 24 year old, originally from Colombia, but living in the US. I was born with Nystagmus and even at this point in my life, I have not been able to properly cope with it. I was wondering if others also have experienced what I have experienced thus far in my life.

For example, whenever there is any kind of change in my daily life, I stress out a lot. Be it meeting new people, or going to a place where I have not been to before, it just stresses me out to no end.

Another thing that currently bothers me is that at this point, I don't know what I truly want to do with my life as far as a career goes. I feel as though any career I can study for, the job can be done by a normal person better, faster and more efficiently. thus I think it is a waste of time to even bother. Is there any field of employment where we have an equal ground with other people? the job market in the US is pretty terrible right now, so this IS an important factor. employers are not about to hire people who will perform sub par as opposed to someone who can work efficiently.

Something else that has troubled me my whole life is my ability (or lack thereof) to make friends. a huge part of social interaction is eye contact, which I cannot properly do due to obvious reasons. people just give me weird stares when they notice the movement of my eyes as if I am some sort of freak. it is very discouraging.

One more thing that bothers me is my inability to drive. although I passed my driving exam on my first try and have my license, I've chosen to not drive because I feel as though it is just too dangerous to those around me. I am unable to properly use the rear view mirrors due to my poor eye sight, so despite having a license, I've chosen not to drive. this limits my freedom by a great amount. I have to depend on others to take me places where I want/need to go because public transportation isn't always available when you need it nor does it go where you want it to all the time.

Off the top of my head, this is all i can think of right now. but I am wondering, are there other people with Nystagmus who have had similar experiences ? were you able to cope with them? if so how? I am seriously at a loss at this point.

[John Sanders]

Hi and welcome to the forum.

I'll answer your points one by one as best I can.

Yes, nystagmus does increase when we're stressed or tired -- that's now well documented, so you're not alone there. Obviously it does make meeting people more challenging, but being aware of the problem does usually help.

People with nystagmus do an amazing variety of jobs. The list I have includes software developers, teachers, bankers, researchers, musicians, pharmacists, doctors, lecturers, mechanics, journalists, shop assistants, ticket inspectors, bar-staff, actors, waiters and waitresses, chefs, hospital porters, security guards, therapists and many more.

Yes, you're right that it's often harder for us to find and retain jobs than people with normal vision. But if you persevere and stay positive, you will find something. As you gain more skills and experience and become more valuable to employers, the fact that you have nystagmus often becomes largely irrelevant. Good employers will be flexible. Remember too that almost everyone at some point in their life has some kind of health or other problem which makes them less than "perfect" in employment terms.

As for friends and eye contact that can be difficult. But most people find ways of overcoming it. Hopefully you will get some suggestions here. I've always found it helps to be open about nystagmus and put people at ease about the condition. Most are interested and understanding -- although only tell them as much as they want to know.

Like many people with nystagmus I don't drive. I knew that from an early age, so I've always built my life around not having a car. That means living somewhere with good public transport and where I can walk to most places I need. Yes, sometimes, we do rely on others for a lift. So I make sure I show my gratitude and find things I can do for them in return.

No-one's suggesting that living with nystagmus is easy, but it's not the end of the world either. Try to find others near you with the condition - at 1 in 1,000 we are here. Talk to them and share the problems.

Hope this helps.

John

[Ambzsie]

Thanks for your reply.

The reason i made this post is because everyone seems to paint this imagine of rainbows and unicorns when it comes to living with nystagmus, when it is not easy at all. and the people who have perfect vision more often than not just don't understand.

[Sofie2]

Thanks for your reply.

The reason i made this post is because everyone seems to paint this imagine of rainbows and unicorns when it comes to living with nystagmus, when it is not easy at all. and the people who have perfect vision more often than not just don't understand.

That is so true. Someone once suggested that Nystagmus only affects my confidence and that poor vision is just an inconvenience.