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Working with Nystagmus: Low-Cost Workplace Adjustments and Practical Support

/ Employment, Eye Health, Sight Loss Awareness / By

Picture an employee asked to read a printed handout in a meeting. She turns her head slightly, holds the page close, and takes a little longer than her colleagues. It would be easy to read the head turn as disengagement and the slower reading as poor preparation. She may simply be using the gaze position where her vision is clearest.

Nystagmus is often misread in exactly this way. The adjustments it calls for are usually small and cheap, but they depend on understanding what is actually happening. This article sets out what nystagmus is, how it tends to show up at work, and what occupational health, HR and case management teams can do to support someone well.

A person working at a laptop at a table

About nystagmus

Nystagmus is an involuntary, repetitive movement of the eyes. The movement may be side to side, up and down, circular, or a mixture. The Royal College of Ophthalmologists and RNIB describe two broad groups. Infantile (congenital) nystagmus appears in the first few months of life and may be linked to an eye or brain condition, to a genetic cause, or to no identifiable cause at all. Acquired nystagmus develops later, mostly in adults, and usually reflects another condition such as stroke, multiple sclerosis, head injury or a side effect of certain medications.

Sources give different prevalence figures. A Manchester NHS patient leaflet says around 1 in 1,000 people are affected, while a Moorfields Eye Hospital leaflet says about 1 in 1,500. Neither source is recent, so treat the figures as approximate.

Two features matter most for work. The first is the null point (also called the null zone), the direction of gaze where the eye movement is slowest and steadiest, often giving the clearest vision. Many people with infantile nystagmus find theirs without being told, and hold their head in a position that brings it into use. This head posture is generally considered harmless, and the RNIB and Royal College guidance says people should be allowed to use it. Surgery can sometimes reduce how far the head needs to turn, but it does not remove the nystagmus.

The second is variability. Both the Royal College guidance and the Manchester leaflet note that eye movements can increase with stress, tiredness, illness or anxiety, and the American Nystagmus Network adds nervousness and unfamiliar surroundings. Someone may therefore see noticeably better on a calm morning than at the end of a long day or before a high-stakes presentation.

Acquired nystagmus differs in one important respect. It is often accompanied by oscillopsia, the sense that the world is moving or jiggling. RNIB and the Royal College explain that this can cause dizziness, nausea and poor balance, and that it may ease over time or persist, depending on the cause. The Nystagmus Network notes that the cause can be hard to pinpoint, and runs peer support for adults living with it.

How nystagmus can affect work

Vision in nystagmus is usually reduced, although the degree varies a great deal and some people see very well. Glasses or contact lenses correct focusing errors but do not stop the eye movement. People differ, and none of this says anything about capability.

Reading is a good example. Fine detail can take longer to process, and the Manchester leaflet notes that the image slips on and off the retina, which makes fast-moving targets hard to follow. Research on crowding, where neighbouring letters make a target harder to identify, found that eye movements raise crowding in idiopathic infantile nystagmus, while in albinism-related nystagmus other mechanisms may be involved (Moorfields Eye Charity, 2023). Spacing and layout may therefore matter as much as size, though the research is still developing. Sustained close work may also lead to eye strain and headaches, so breaks help.

Screen work is often manageable and sometimes easier than paper, because size, contrast and position can all be adjusted. The American Nystagmus Network notes that sitting off to the side of a screen or board does not help, because it causes crowding, and that sitting directly in front with the preferred head turn works better.

Light is individual. Bright light and glare bother some people, and the Manchester leaflet lists photophobia among the possible effects, while others do better with more light. Guide Dogs and the American Nystagmus Network both make the point that good lighting helps, and the second suggests taking specialist advice because people respond differently.

Faces and social cues deserve a mention. A small 2016 study led by the University of Southampton, funded by the Nystagmus Network, used eye tracking and found that children with nystagmus did not look longer at their mother’s face than at another woman’s, as children without nystagmus did. The authors suggested a possible difficulty recognising faces or a different way of looking at them. The study involved children, was reported without participant numbers, and cannot be applied directly to adults. Still, it fits what many people describe: recognising colleagues across a room can be harder than it looks. Eye contact adds a further layer. Someone who turns their head or does not hold your gaze may be using their best vision, not avoiding you.

Acquired nystagmus with oscillopsia can also make stairs and busy corridors harder, which is a matter for individual conversation, not assumption.

No-cost and low-cost workplace adjustments

Area Suggested adjustment Why it helps
Head posture and seating Let the person choose where to sit, directly in front of screens, boards and speakers, using their preferred head position. Do not ask them to straighten up. A comfortable posture brings the null point into use, so vision is usually clearest and effort lowest.
Reading Share documents in advance in an electronic format with adjustable text size and generous spacing. Larger, well-spaced text reduces crowding, and advance access reduces the pressure of reading on the spot.
Screen work Set a larger default text size, strong contrast, and a screen placed directly ahead at a comfortable distance. Brings the null point and a comfortable viewing distance together, which may reduce strain.
Pace and time Allow extra time for reading, proofing and form completion, and avoid timed visual tasks where possible. Nystagmus can slow the processing of fine detail, and stress increases eye movement.
Breaks Build in short, regular breaks from close work. The Royal College guidance notes that detailed visual tasks can cause strain and headaches.
Lighting and glare Let the person adjust blinds, task lighting and screen position. Avoid sitting facing windows. Light sensitivity varies, so personal control is more effective than a fixed standard.
Recognising people Ask colleagues to say their name when approaching, and to use consistent seating at meetings. Reduces the effort of recognising faces and avoids awkwardness.
Variable days Agree a light-touch way for the person to say that today is harder, and be flexible about deadlines where possible. Vision can change with stress, tiredness or illness, so rigid expectations may not match how someone is seeing that day.
Getting around Walk the route with the person, agree clear walkways, and describe changes to the layout. Particularly relevant to oscillopsia, balance and unfamiliar environments.

What this means for occupational health, HR and case managers

The most useful step is to ask rather than infer. A referral question such as “what does this person find difficult, when, and what has helped before?” will usually produce more than “is their vision stable?”.

A good report should separate infantile from acquired nystagmus, because the barriers differ: oscillopsia and balance often dominate in acquired cases, while crowding, head posture and variability are more typical of infantile nystagmus. It should record how vision varies by time of day, stress and task, because a single clinic acuity figure does not capture that. Research supports the concern: a 2023 systematic review in the British Journal of Ophthalmology found that standard acuity testing can minimise nystagmus-specific factors, such as gaze angle and the effect of stress and time limits, and that no complete measure has yet been validated. Treat acuity figures as a starting point.

Eye contact and head posture should not feature in conduct or capability discussions without first asking whether they are linked to the condition. The question is what barriers exist and what is proportionate.

On driving, the position has changed. From 15 March 2019, the DVLA no longer requires drivers with nystagmus to notify it of the condition alone, provided the visual acuity and field standards are met and any associated condition is declared (Royal College of Ophthalmologists; GOV.UK). The acuity standard is at least 6/12 with a readable number plate at 20 metres. RNIB and the Royal College add that those who meet it should still consider their own confidence, since vision can fluctuate. For employers, the point is simply not to assume that someone can or cannot drive, and to treat driving requirements as a separate question from the workplace.

Hints and tips for the individual

  • Use your null point. Sit where it faces the screen, speaker or board, and do not let anyone pressure you to hold your head differently.

  • Tell people early what helps, in a sentence or two, such as “I see best when I look slightly to the side, so I may not look straight at you.”

  • Ask for documents in advance, in a format where you can change the text size and spacing.

  • Take short breaks from close work, and plan demanding visual tasks for the part of the day when you see best.

  • Control the light where you can, and try a screen position that avoids windows behind or in front of you.

  • If your vision has changed recently, speak to your eye clinic, because some causes are treatable.

Building awareness and communication

Most misunderstandings come from reading a visual behaviour as a social one. A short, plain explanation from the employee, or from a manager with their agreement, is often enough: the eyes move involuntarily, the head turn is deliberate, vision can vary from day to day, and eye contact is not a measure of attention. Colleagues usually respond well to specific requests, like announcing their name or sharing slides beforehand. Managers can also make it easy to say that today is a harder day without it becoming a performance matter, and team awareness training can settle these points once.

Legal rights and support

Under the Equality Act 2010, a person is disabled where they have an impairment with a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities. Long-term generally means that the effect has lasted, or is likely to last, at least 12 months, or for the rest of the person’s life (Schedule 1, paragraph 2). The effect of treatment or aids is ignored, other than ordinary glasses and contact lenses (paragraph 5). Anyone certified as sight impaired or severely sight impaired by a consultant ophthalmologist is treated as disabled (regulation 7, Equality Act 2010 (Disability) Regulations 2010), though not everyone with nystagmus is certified. Where the definition is met, the employer must make reasonable adjustments. Whether the definition is met for a particular person depends on their circumstances, and this article is general information rather than legal advice.

Access to Work can help with specialist equipment, support workers, travel costs and adaptations for eligible people who are in, or about to start, paid work in England, Scotland or Wales. GOV.UK states that it does not pay for reasonable adjustments an employer must legally make, though it will advise the employer on them. Northern Ireland has a different system, which is run through nidirect.

Summary

Much of what helps with nystagmus is about fit: where someone sits, how documents are shared, how light is controlled, and how much room there is for a harder day. Most of it costs little or nothing. Ask the person, adjust around what they say, and keep the conversation open as their vision or role changes, especially with acquired nystagmus as symptoms settle.

Frequently Asked Questions

It can be. The test is whether the impairment has a substantial and long-term adverse effect on normal day-to-day activities, taking account of the rules on treatment and aids. Whether it is met depends on the individual's circumstances, and this is general information rather than legal advice.

Not for nystagmus alone, according to GOV.UK, provided they meet the vision standards for driving and declare any associated medical condition. People who cannot meet the standards, or who have a related problem such as double vision, still need to notify the DVLA. Check the current GOV.UK page before relying on this.

Eye movements can increase with stress, tiredness, illness or anxiety, as noted by the Royal College of Ophthalmologists and RNIB. This is why a person may see well at one time and less well at another, and why flexibility can matter more than a fixed adjustment.

Generally no. The RNIB and Royal College guidance says that holding the head in the position that gives the best vision is generally considered harmless and should be allowed. It is usually the person's way of using their null point.

If you or someone in your team is visually impaired and would like expert, tailored support to stay productive and comfortable at work, visit https://visualisetrainingandconsultancy.com/workplace-assessments/visual-impairment-workplace-assessments/ to arrange a visual impairment workplace assessment.

Sources