Pixel Glade

Life With Nystagmus, My Vision Impairment

24 April 2024

I am writing this to share my experience on how having a visual impairment has affected my life in a general way.

To help me finish this blog post, I'm including some images I got from Unsplash to try break up the text and communicate a feeling, whether that's abstract of not. I include a few of my own photos as well, but I explicitly say if they're mine or not.

I've had this post as a draft for months because I was considering sharing a video of my impairment as evidence and for educational and demonstrative purposes, but it was stalling my progress because I wasn't sure if I wanted to. Since it's stalling me I decided not to. I also wondered if wanting to show people was a sort of case of internalised ableism, because I felt like I needed to prove I had a disability somehow. For a bit more about ableism from a vision impaired perspective, see How you can help break the cycle of everyday ableism (by the Perkins School for the Blind).

I think since because my vision disorder is uncommon and frequently not understood when talking about it I usually feel like it's my responsibility to educate people. Showing people my impairment is something I've only done with people I'm close to, and even then, they might get an intuitive sense of why I can't drive for example and how it might impair me in a general way, but they don't really understand from a first person perspective since they have no reference point. I think a lot of people with disabilities encounter this communication problem and feel the frustration. So, I will try to communicate aspects of my experience using text.

This post is split into 2 parts, with a 3rd part about web accessibility going on my other blog.

1. What is pathologic nystagmus?
2. Quality of life with nystagmus

My aim is primarily to share my experience across some key areas.

What is pathologic nystagmus?

Pathologic nystagmus is an uncommon disorder that reportedly affects 24 per 10,000 people. Pathologic nystagmus is a disorder of the visual system and vestibular system. It causes uncontrolled eye movement that affects vision as the brain does not correct for the visual motion (vestibular involvement). Cleveland Clinic reports that nystagmus is associated with:

• Uncontrollable eye movement
• Nighttime vision problems
• Shaky or blurry vision
• Balance problems
• Light sensitivity
• Dizziness or vertigo

They also state that the eye movements can cause issues with vision, depth perception, balance, and coordination.

The type of nystagmus I have is acquired gaze-evoked nystagmus which has a horizontal-jerk motion. Nystagmus is a permanent condition, unless it has a treatable cause like a tumor that can be removed.

Nystagmus has no cure and all treatments are around symptom management. Some general tips from the American Nystagmus Network for managing congenital nystagmus include:

• Glasses to correct other vision problems like nearsightedness
• Angle of vision (null point where vision is improved and nystagmus is dampened or not present)
• Technology to change font size to whatever the person prefers
• Good lighting

As quoted on the American Nystagmus Network:

Finally, a widespread lack of understanding of the various types of nystagmus is often as much a source of difficulty as nystagmus itself.

So this is just a reminder that this blog post is just one perspective out of many manifestations of nystagmus. Everyone is going to have a different experience and this is just one of them.

Nystagmus simulated image by me

I wasn't really happy with any of the nystagmus simulations I saw (like the one on the Nystagmus page on the Vision Australia website is essentially just a motion blur/ out of focus image, which isn't severe enough in my case), and motion blur images I searched for were often more artistic than useful to communicate this condition so I made my own. I edited this scene of a street to have a blur and image shifting that occurs when I get nystagmus. The thing that's missing in a static image is motion - try to imagine the image is moving back and forth and that the image is not stable. The blurred image is more an overall impression of when I get mild-medium nystagmus episodes (if you dialed the blur and jerkiness even higher it would be a severe episode). It's worth noting that it's not just a blur, your brain "catches" small snippets of the scene for a fraction of a millisecond as it jerks from side of side so there's those impressions overlaid over a blurry image.

In the end, this is just an impression I was able to make, it's never going to be 100% accurate.

My history with nystagmus

I've never met another person in real life who has pathologic nystagmus, and with the exception of the vision researchers I've met, nobody has ever heard of it. I've had this condition since I was 14 years old, with vision problems prior which I assume are related. The last time I was examined in detail at an opthalmologist and I asked what the options were for finding out the cause, he essentially said he could do some exploratory tests but it would probably be expensive and the odds of finding conclusive evidence was low. So I decided that unless my vision worsens significantly that suggested something else might be going on, I was not going to investigate further. And to be a realist, even if there was a cause determinable by a brain scan there is no way to cure it anyway. What's the point?

Gaze-evoked nystagmus means my range of useable vision is restricted and causes functional blindness when the nystagmus is triggered by eye-saccades into my peripheral visual field. I get oscillopsia which means when my eyes move from nystagmus my brain does not correct the motion and it is essentially the worst shaky cam you've ever seen, and it is impossible to focus on anything and everything is essentially a moving blur. The term functional blindness is what an opthalmologist who inspected me referred oscillopsia as.

The restriction doesn't show up on a peripheral visual field test either in my case, so I have perfect peripheral vision but a restricted range of vision mobility. It was a little frustrating after my most recent optometrist test having them acknowledge the range at which I can move my eyes is "very restricted" yet my peripheral field test is perfectly normal.

The restricted field of vision results in a lot of head turning because the null point (where nystagmus doesn't happen) is only in a narrow part of my visual field. If I have to turn my head a lot in a conversation group to track the speaker, for example, to avoid straining my neck I will sometimes adjust by just staring at something nearby like my hands or something on a table. It's a conscious effort to look up and make eye contact occasionally. Lack of eye contact is something I've gotten a lot of complaints about from well-meaning mentors and teachers who thought my poor eye contact during oral presentations and meetings was because I was lacking self confidence. If only that was all it was.

Quality of life with nystagmus

There are limited studies on the quality of life of people with pathologic nystagmus partially because it is so heterogenous with multiple Nystagmus Types and many cases do not have a clear cause (are idiopathic), like mine.

A 2011 study by the British Journal of Opthalmology called Living with nystagmus: a qualitative study conducted semistructured interviews to identify areas affected by daily living with nystagmus, the first study of its kind. I felt validated reading this paper because it clearly articulated and organised daily problems into areas that I felt I was affected by. It was nice to read because I felt listened to on some level (even though I wasn't the one being interviewed).

The paper identified six domains that were adversely affected by nystagmus:

• visual function
• restriction of movement
• standing out/not fitting in
• feelings about the inner self
• negativity about the future
• relationships

I will organise the first part of this post by dividing my thoughts into the six categories above, along with comments relating to the paper.

The most obvious one comes first.

Visual function

The paper goes into detail about the areas of visual function that are impaired. For brevity, I will discuss only some of them.

Specific tasks that are reportedly affected include watching the television, reading street signs, and reading text. Facial recognition was reportedly impaired. Reading was affected due to tiredness reading. Poor lighting, fatigue, and difficulty reading small print, losing your spot on the text, visual search (for a face) in a crowd, having trouble recognising people when being out were all reported.

Text length and monitor distance

I have to turn my head a lot to read since I can't move my eyes left or right very far at all. I usually prefer shorter line lengths and will usually resize the window of my browser to read on a smaller size. I usually prefer to arrange multiple windows on the same screen rather than using a second monitor. If I have to watch TV or a movie I usually prefer to watch it on a screen close to me, with the viewing window usually smaller than the full screen size so I don't have to turn my head to read subtitles, for example.

When going to the cinema, it is better for me to sit at the back and off to one of the sides at the extremeties. I feel like it's easier for me to hide my head rotation if I'm off to the side. I am usually more uncomfortable and self conscious being in the middle. I try to not make my head movements obvious. If I do it too much I will usually just stop and fixate on a particular part of the screen even if that means I can't actually interpret what is happening on the screen very well. If I'm having a really bad vision day I sometimes just don't look at the screen as much. If my nystagmus triggers too easily I will sometimes just listen to the movie instead and look up occasionally to figure out the general setting and what characters are in a scene.

Moving my head too much to read text can result in neck pain or strain which can lead to or worsen headaches.

Slow and impaired visual search

Overall I would say visual search is much slower due to the need to move my head. The inability to move my eyes across my visual field significantly slows visual search and the shaky saccades affect my vision even when I'm not having a nystagmus episode. Complex visual search is difficult. Like the people interviewed in the paper, I sometimes have trouble finding people in a crowd to the point where I've sometimes accidentally walked past people I was supposed to meet and they had to shout at me to get my attention.

Dizziness and vertigo from frequent saccades

On a smaller scale, if I have to search for a variable in a line of code I rely a lot on Ctrl+F to find it. I lose my place frequently and eyes movements associated with search can cause nausea and vertigo if I do it too much (anywhere between 2-20 minutes I notice this starting to happen).

On a related note, it can help to increase the line height. Code is difficult to read because the line height is usually small and text is very dense since I lose my place easily. Breaking up text into paragraphs helps a lot too.

Impact on illustration

Regarding eye strain, even though I love illustrating, I get migraines from eye strain occasionally. When the eye strain gets bad, I get migraines, I get dizziness and nausea when moving my eyes or seeing motion. I even get nausea moving my eyes on the screen a lot like if constantly checking a reference image or just the movement from scrolling down a page. It's not ideal so I try to mix up drawing with other tasks. Being rate limited at drawing by having a visual impairment is forcing me to consider branching out more into other design areas.

I'm thankful I studied graphic design which has a wide range of possible projects from logos to web design, not all relying on producting detailed illustrations. Web design and accessibility auditing (my other site has a Web Accessibility Testing page) is looking more like an avenue I want to keep focusing on because I find it very gratifying.

Since I don't always experience the negative effects of drawing for long periods, I feel like I am standing right next to a border which I temporarily cross to become more vision impaired under certain conditions.

Restriction of Movement

Interview participants reported issues with driving, education, leisure, occupation, and a necessity to use public transport and having to rely on others. The paper summarises that those with nystagmus feel constrained physically (getting place to place) and socially. Ninteen of the twenty one interview participants reported being unable to drive and that this restricts travel and other areas like available occupations.

Not being able to drive affects what you can do for a living, where you can live, relying on public transport and other people.

In my case, nystagmus also causes problems with seeing in low light, tripping on footpaths is common if the path is uneven or broken.

Stairs as a gravity trap

Nystagmus for me can be triggered by looking up or down as well as side to side. I often rely on the hand rail to use stairs because of balance problems and nystagmus affecting my gaze when looking down. I've tripped up and down stairs before, so I use stairs slowly. I also rely more on tactile sensations when using stairs like dragging my feet along the floor until I can feel an edge.

Unable to drive

I feel limited by location in that I always have to be in a city with well serviced public transport. Rural areas are mostly inaccessible. So it means when I do find a bus I usually have to do a lot of walking around (not bad in of itself, mind you, unless the stop is far away).

Public transport woes

I sometimes have this overarching feeling like I'm not wanted in broader society because public transport while present is frequently late and takes a long time. It feels like a bad joke that a car ride should take 20 minutes while the same distance by bus can take 3-4 times as long.

In 2018, The Brisbane Time released an article Brisbane has Australia's worst capital city public transport. Brisbane is particularly bad because the buses are poorly accessible, only 12% of residents have access to half-hourly public transport, and many live away from the network. Sadly, not much has changed since this article was released. They also released an article Brisbane most expensive city for transport costs as percentage of income: report. Public transport is around $65 a week according to the SBS (Australians spend up to $22,000 per year on transport, says report).

I am grateful I have access to public transport but it could be so much better. Compounded by the rental crisis, finding low income private housing close to public transport is difficult. The last time I was looking for a rental I ended up having to go further out from the city to the point where some places had buses that just stopped running at 6PM and didn't exist on weekends. I found somewhere suitable thankfully but it was very difficult, as the rental vacancy rate is currently sitting at about 1% (The Guardian reports No relief for tenants as Australian vacancy rate falls in January, with Sydney worst hit. It's really bad out there.

Restrictions in job opportunities

Often jobs will have a requirement that you need a driver's license. As someone trained in graphic design, for jobs like photography you need your own transport to get on site somewhere. As a designer, I've traveled by public transport to take photos somewhere for class projects, which is fine, but a job that depends on me being able to get anywhere myself when you're on the clock? It doesn't seem practical.

It's already enough of a hassle that if I have to go to a doctor's appointment during the day that's one and a half hours away (such as a specialist, which I have to see every few months for HRT), I've just spent 3 hours of my day on public transport just for a 20 minute appointment.

The inconvenience of being unable to drive

Things people take for granted like being able to pick up and leave on a moment's notice is something I can't do. When I have to move to a new place I usually get a friend to help me and repay with them with lunch. I don't like feeling like I'm a burden. Thing is, I don't want to pay several hundred dollars to a private provider to move every time I get stuck with a bad landlord, accommodation, or housemates. It's just the hidden tax associated with having a disability.

Standing out/not fitting in

Interview participants reported that others had a negative or avoidant reaction to the cosmetic appearance of nystagmus. Participants reported that nystagmus caused issues with eye contact. Generally, participants reported that others failed to recognise what it was like to have nystagmus and that there was a lack of understanding that exists about the condition.

I've gotten so good at avoiding triggering nystagmus that most people don't know I have it when I mention it. When I've actively shown people their reactions range from "that's a good party trick" to "that looks painful" or "that looks uncomfortable" or "okay I get it, you can stop now." or the more neutral "I can see why you can't drive now".

The good and the bad

Since nystagmus is a part of me whether I like it or not, experiencing negative reactions to my condition feels a little like a rejection of me, even though the person I am is more than just my impairment.

I generally avoid showing people my condition or sharing that I have it unless the topic of driving comes up and I have to explain why I can't, because people are generally confused and have never heard of nystagmus. Honestly, sometimes people look at me like I've grown extra heads because nystagmus is a weird word. People sometimes have negative reactions to seeing it, I mean, it's not like I can see it since I'm experiencing functional vision loss when I trigger it, but it's not my fault it looks like that (yes, I know what it looks like, I've recorded videos of it).

Overall I think a lot of the coping behaviours I use to help me manage my vision strain or having nystagmus probably comes across as a bit on the autism spectrum - let's be real though, I probably am on the spectrum somewhere although I've never sought a diagnosis.

Feelings about inner self and negative future

Interview participants reported that nystagmus affected confidence and self esteem.

Impact on social interactions

There's a 2023 review paper The impact of low vision on social function: The potential importance of lost visual social cues where they highlight at how vision impairment affects the loss of social cues such as facial expression and body language. The authors relate the impaired facial processing as similar to those with autism spectrum disorder or prosopagnosia. Although this is just a review paper, recognition for the impairment is important. It is also worth noting that due to altered social behaviours, vision impaired people may experience misunderstanding or discrimination.

Summary

This was a long blog post but I tried to cover a few different areas so you can get a general sense for how nystagmus could impair someone, and discuss how having a visual impairment has affected my life in a few different domains. If you learned something or you have a visual impairment or disability yourself, I would love to hear from you. Otherwise, if you have any questions let me know.

This post took a long time to put together so I'm going to release it into the wild. I've got a part 2 in progress more focused on digital interfaces and accessibility as it relates to nystagmus so I'll add a link to this post when it's ready.

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