By Amanda Nelson


I have Nystagmus, and a few weeks ago The Nystagmus Network released a case study report on the effects of Nystagmus and quality of life. (

The case study took a sample of people of different ages, and different kinds of Nystagmus. I like how they were able to provide a table of demographic information of the people who they interviewed. I believe this will help educate the general public on the variety of Nystagmus and how it’s a life long condition.


In the report, the authors discussed three main areas of impact-which also included some subcategories of emotional impact.

The first topic of discussion was visual function, and the report stated that many people find it hard to watch tv, see street signs, and to recognize people. I agree with this because I do not watch tv, I struggle with seeing the details and the movement gives me motion sickness. Even though this is difficult, I can still enjoy YouTube and some Netflix shows. I have also tried the suggestion of watching tv with my telescope, however I do not prefer this method. The method I’m looking into now is audio description.

I struggle with seeing street signs; however, knowing the area helps, and having my telescope on hand to read the signs is helpful. Do not forget you can stop and ask for assistance.

Lastly, the next sub-topic was recognizing faces of friends and loved ones. I feel that when I am having a “bad” Nystagmus day either do to stress or being tired, I have a hard time recognizing faces. Even though this happens on occasion I can recognize them most of the time. One tip I use when I’m in a busy area is to remember what the person is wearing.


The next second sub-topic  that was covered was restriction of movement. Under that was four sub-topics that were covered.

The first sub-topic was driving, this topic hit me hard, and I am glad that I am not the only one who feels sad, angry ect.  I feel left behind my peers when it comes to career achievements, shopping, ect. Even though, I have this struggle I know that there is things like Urber or Lyft to help me achieve these goals, and as long as I continue to work hard, I can have a great career. There are also things like Amazon to help with shopping.


Under driving was the use of public transportation; it was reassuring that I am not the only person who uses it, and sometimes struggles with it. Since I’ve been job hunting I have met a lot of people who use public transportation and are living full lives.

Occupation was the next sub-topic and it also hit me hard. The fact that having Nystagmus, and for the most part a lack of a driver’s license, does impact your career choices. I found over the past few years of job hunting, that there is stigma of not having a driver’s license and most employers have concerns about visually impaired people getting to work on time. So, not being able to drive effects the choices of having a career greatly. That being said, sometimes being self-employed can be a good thing.


The next sub -topic was leisure activities.  I feel  a strong of a connection on this topic, because I am going to have to start using the internet to do my shopping, and meeting with friends must be made in advance. Even though these allowances have to be made, I can still enjoy leisure activities just in a different way.


The next sub- topic was relying on others; this made me feel sad. I currently have to have my grandfather help me with several things from taking me to the store, to helping me with ordering something online. When you have Nystagmus you are going to have to rely on others sometimes. I’m thankful for the help I am getting.


The second topic was standing out/not fitting in.

The next sub-topic was visible aspects/cosmetics.  I feel a connection to this because when I get nervous, especially during a job interview, employers have asked me if I am lying about my disability or if I am using drugs. Many eye doctors have said that I am moving my eyes for attention.

The next sub- topic was eye contact. I am lucky that I’m able to make eye contact, however I understand that this issue is a major concern to those who brought it up.

The next sub- topic was comparisons to others.  I do this a lot either to my sighted peers or sometimes to someone who has achieved more despite having Nystagmus themselves. I feel left behind on many achievements in my life. Even though I feel this way, there are things that I have achieved despite having Nystagmus. For example, going to college, freelancing.


The next sub- topic was others failure to recognize the condition and the effects of it.  I agree when the article stated that the people who were interviewed, were left out by many medical doctors, scientists, family members and friends. I’ve had many medical doctors and eye doctors say they have never heard of the condition, and for those who have, I have had them say to me that I am moving my eyes for attention and that my visual impairment does not exist. Many of those doctors do not understand the impact that Nystagmus has on my life.

My family fails to understand that I can not get more help than what I am getting, and that I am limited with my career choices.  Even though there are people who do not understand Nystagmus and how there can be limitations, I do have supportive friends and some strong family connections.


The next sub- topic was feelings about inner self confidence and self-esteem. This is another topic that I agree with because I was not getting any help for my visual impairment until my late elementary years. My mother kept me from doing a lot of things for myself, and this has impacted who I am today. Even though I had problems with self-confidence and low self-esteem, there are things you can do to improve this, like taking a class, learning new skills.


The next sub- topic was sadness/distress, I feel sad that I have this condition and I wish I could change it. It feels good that I am not the only one who feels this way.  Even though I wish I did not have this condition, it has made me work harder for my achievements and for my goals.


The next sub-topic was Negative future abandoned/let down. I feel letdown by employers and my caseworkers when I don’t get what I need or when I am told there is nothing else we can do to help you. Even though I feel this way, I know there will be an employer who, will one day, hire me.  I am lucky to get the help with the caseworkers that I do have.  I feel negative about my future when it comes to having children; I would feel guilty if the condition is passed on.


The next sub- topic was hopelessness. The only time I feel this way is when I look at the negative aspects of having Nystagmus.  So, instead think about the positive aspects of having the condition and focus on what you can do.


The last topic was Giving up/Not attempting. I feel this way when I do not have a ride to get to an event. There are things that I want to do, however there is not reliable paratransit transportation in my area. Even though the paratransit isn’t that great at least, It’s there to use.


I feel happy that doctors and scientists want to look at these issues further, however I feel the report was very negative.  I hope this will educate the public on the impact of Nystagmus in a more positive light.


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