Although narcolepsy can have significant indirect effects on attention, attention span, and short-term memory, it does not directly affect cognition or intelligence. As long as the sleep disorder is properly cared for, many people with narcolepsy are able to work, although obviously some careers are not open to them.
Keep your employer informed
It is important to let your employer and co-workers know about the diagnosis. Notifying your employer can help them understand your needs and help you continue to have a successful career. It may be worth contacting your employer to take steps such as planning daytime naps, recording meetings and/or flexible working hours, all of which can help you work effectively.
Awareness and understanding of narcolepsy is still very limited, so a key factor in being successful in employment is ensuring your employer is fully aware of your condition. Once your employer understands this, it should be much easier to develop a nap strategy and discuss mutually beneficial work hours.
Work and narcolepsy
Having narcolepsy doesn't necessarily prevent someone from doing the work they want to do, but some problems may interfere with work.
Narcolepsy and its symptoms
Narcolepsy is a neurological disorder that causes the parts of the brain that control sleep and wakefulness to stop functioning properly. There are mixed messages about when to sleep and when to stay awake. When you have narcolepsy, your brain moves between sleep stages at inappropriate times. These changes are uncontrollable and can cause many symptoms. Symptoms most likely to affect work life are:
excessive daytime sleepiness
Persistent feelings of tiredness during the day and an irresistible urge to fall asleep. This can cause someone to fall asleep at inappropriate times and in unusual places. Even when not asleep, they may be very drowsy and preoccupied trying to resist the urge to sleep.
Cataplexy
Sudden onset of muscle weakness, often triggered by strong emotions, primarily laughter, anxiety, and anger. These attacks can last seconds or minutes and may involve the muscles of the face, neck, and upper or lower limbs. The head may droop and speech may become slurred. More severe cases may cause the patient to drop something or become unstable, causing them to kneel or fall to the floor. It is important to note that cataplexy does not mean loss of consciousness; Those affected are fully aware of what is happening.
Microsleeps and automatic behaviors
People with narcolepsy may appear to be dreaming or become unresponsive when spoken to. This may last from a few seconds to a minute, during which the person is asleep. These episodes are called microsleeps. Microsleep is usually not obvious and can be easily overlooked.
During microsleeps, people may continue to perform the tasks they are engaged in. This is called automatic behavior. The person will have no memory of it. After these events, they may appear confused and disoriented.
Not all people with narcolepsy experience all of these symptoms. However, nearly all suffer from excessive daytime sleepiness, and many also exhibit cataplexy. The severity of symptoms varies from person to person.
Whether someone's narcolepsy affects their work depends on the nature and severity of their symptoms, and how well they can be controlled.
Of course, this also depends on the nature of the job and any possible risks due to excessive drowsiness or cataplexy, for example. Two important laws relevant to these issues are the Health and Safety at Work Act 1974 and the Equality Act 2010.
health and safety law
The Health and Safety at Work Act 1974 imposes a duty on employers to ensure that the workplace is safe for all employees and that all employees are protected from potential health hazards. It is important to note that employees are also responsible for their own safety at work and the safety of their colleagues.
Equality Act
The Equality Act 2010 protects people from discrimination, including discrimination on the basis of disability.
The Equality Act 2010 defines disability as "a physical or metallic impairment that has a substantial and long-term adverse effect on a person's ability to carry out normal day-to-day activities".
"Substantial" means that activities are more difficult or time-consuming than normal people, and "long-term" means at least twelve months.
"Daily activities" include being able to move around, remember things, and be able to concentrate.
Narcolepsy is a lifelong physical condition and therefore people with narcolepsy are protected under the Equality Act 2010 even if their symptoms are well controlled and even if they do not consider themselves to be 'disabled' .
Types of Disability Discrimination
Discrimination on the basis of disability can take many forms, all of which are recognized and addressed by the Equality Act 2010.
direct discrimination
It is illegal for an employer to treat a disabled person worse than a non-disabled person without justifiable reasons.
There are several different types of direct discrimination:
Perceived discrimination occurs when someone is treated unfairly because a disability affects their ability to carry out daily activities. An example would be to assume, without any basis, that a person with narcolepsy cannot perform a job as well as someone without narcolepsy.
Associative discrimination occurs when someone is treated unfairly because of their association with a disabled person. An example of this type of discrimination is not appointing or promoting someone because they have a dependent relative with narcolepsy.
Harassment is treatment that is unreasonable, humiliating or offensive because of a disability.
indirect discrimination
This treats everyone equally, but in a way puts disabled people at a disadvantage. For example, the rule "everyone must use the stairs" is unfair to people who use wheelchairs. Employers must be aware that in order to treat all employees equally, they may need to treat employees with disabilities differently than those without disabilities.
Discrimination based on disability
This is treating someone unfairly because of their disability. This type of discrimination can occur, for example, if a person with a visual impairment is told (without valid reason) that they cannot bring a guide dog to work.
Failure to consider reasonable adjustments
Reasonable adjustments are changes that employers should consider making so that disabled people are not put at any disadvantage.
victim
This is unfair treatment of someone because they have complained about any form of discrimination, whether their complaint is against themselves or on behalf of someone else.
For people with narcolepsy
As with anyone, the type of work you can do depends on your skills, qualifications and experience. It may also depend on how your narcolepsy affects you.
Can I do any job I want?
unnecessary. All employers must comply with safety and equality laws, which include:
- When you apply for a job, from the time you are employed (including promotions and training) until you leave your job; and
- You should apply regardless of whether you have a disability when you apply for a job or if your disability begins after you are hired.
An employer cannot legally deny you a job simply because you have narcolepsy. However, they do have to consider your narcolepsy and the content of the job to ensure your safety and that of other employees.
Safety at Work
Safety risks depend on your narcolepsy and what the job involves. Certain jobs may be risky if you suffer from excessive drowsiness or cataplexy. For example, working around unattended machinery and working at height or around open water. Every situation is different, so your employer will need to carry out a risk assessment to examine how your narcolepsy could affect your own safety and the safety of others at work.
Can I have a job that involves driving?
Many people with narcolepsy are able to drive, and if the DVLA thinks your symptoms are well controlled enough to issue you a driving license, you should be able to work in jobs that involve driving. Some employers may consider your driving ability when conducting a risk assessment. For example, if the DVLA is satisfied that you can drive safely, your employer may decide that you can work as a mechanic.
Other health and safety regulations
Many professionals have a governing body that sets health and safety regulations. They will usually consider your personal circumstances to see if you can do the job safely.
Reasonable adjustments
Employers need to consider making adjustments to help you do your job as well as other employees. This means looking at:
- Anything related to your job that would be difficult for you to do or that might put you at risk;
- Any situation in the work environment that makes it difficult for you to do your job or may put you at risk; and
- Whether any changes to the job or work environment will help overcome these problems or risks.
The purpose is to ensure that, as a disabled person, you have reasonable access to everything involved in obtaining and performing work as a non-disabled person.
Adjustments will vary, depending on how your narcolepsy affects you and your work. Your employer can make adjustments when you apply for a job or at any time during your employment.
Adjustments for narcolepsy may include:
- Flexible working hours, allowing for naps;
- Provide designated sleep rooms where people with narcolepsy can take uninterrupted naps;
- Allow time for medical appointments.
Help finding a job
You can find work through your local Jobcentre Plus office, personal contacts, newspaper and website advertisements or employment agencies.
Jobcentre Plus offices have Disability Employment Advisors (DEA) to provide support to people with disabilities. They can help with assessments, referrals to disability programs (such as WorkChoices), job matching, and providing information about employers.
Have a positive attitude toward hiring people with disabilities.
If you receive benefits, you can ask your local Jobcentre Plus to find out how your benefits may be affected.
Tell people you have narcolepsy
Do I have to tell my employer?
You don't have to tell your employer about your narcolepsy, but it's recommended for a number of reasons.
Your employer can only help if they know you have narcolepsy
Some people worry that telling their employer they have narcolepsy may affect their chances of getting a job or being treated fairly at work. Although discrimination can occur, the Equality Act 2010 is designed to protect you from discrimination and help your employer treat you fairly and support you at work. Understanding your narcolepsy can help your employer do this.
Employers have responsibilities under the Work Health and Safety Act
In order for employers to meet health and safety regulations, they need to know if employees suffer from any medical conditions that may affect their work. Employers can only ask you questions about your health to help keep you and others safe at work and to help you be able to do your job. If your employer knows you have narcolepsy, they may make changes to your job or environment to make it safer for you. If you don't tell your employer, you can't hold them responsible for not doing a safety assessment for you.
Employers should consider making reasonable adjustments
If your employer knows that you have narcolepsy, they can consider making reasonable adjustments to your job or work environment. If your employer doesn't know you have narcolepsy, they have no reason to consider what they can do to help you, and you can't hold them responsible for any consequences of their failure to make reasonable adjustments.
The people you work with will be better equipped to help you
Often people feel more comfortable with narcolepsy if they understand what it is and know what to do when they fall asleep or have a seizure. This may make them more confident about how to help you at work.
You have a duty to keep your workplace safe
It’s not just employers who have an obligation to ensure the safety of all employees. As an employee, you also have a responsibility to keep yourself and other employees safe. Not telling your employer about your narcolepsy may mean that you need to perform duties that would not be assigned to you if your employer did know about your narcolepsy. This may put you and others at risk.
When is the best time to tell a new employer that I have narcolepsy?
If you decide to tell your new employer that you have narcolepsy:
- You can mention this in your job application, either on the application form or in your cover letter. This may include details about your narcolepsy from your GP or consultant. This may help your potential employer learn about your narcolepsy before the interview.
- You might bring it up in interviews and talk about it face-to-face. This gives you a chance to demonstrate your skills and experience before talking about your narcolepsy.
- You may mention this during your final interview or job offer. Once you tell your new employer that you have narcolepsy, they must carry out a risk assessment and consider what reasonable adjustments they can make to help you. They may seek medical advice or ask a health and safety or occupational health professional to help them.
Get job opportunities
Opportunities to Work is a program that supports people with disabilities and their employers. If you have problems or special needs at work due to narcolepsy, Access to Work may be able to help you find solutions. For example, they may be able to fund reasonable adjustments, such as equipment or extra support at work, or help pay for commuting to and from get off work if you are unable to drive or use public transport.
Other travel expense help
If you don't drive because of narcolepsy, you can apply for a railcard to get discounted rail fares. You can also apply for a free nationwide bus pass to explore the UK.
Will I lose my job because of narcolepsy?
If you are already working and have narcolepsy, or if your narcolepsy changes and starts causing problems at work, you may worry about losing your job. Under the Equality Act, your employer should consider reasonable adjustments so that you can continue to work.
If you have narcolepsy, or if your symptoms are difficult to control, you may be referred to a specialist to check for your narcolepsy. The review may help make decisions about your job. For example, it may help determine reasonable adjustments for you. While you are being tested or treated for narcolepsy, some adjustments may be temporary and some may need to be changed over time.
Who can I talk to?
You may want to talk to your line manager or someone in HR or HR (if you have one) about how you feel. Talking about any problems or concerns you have may help them support you or seek reasonable adjustments that may help you.
