Applying for disability benefits when newly diagnosed with narcolepsy

A narcolepsy diagnosis can quickly raise practical questions: Can I keep working? What support is available if my symptoms interfere with my job?

In the near term, the answers are usually that federal and medical leave and workplace accommodations can help you keep working.

Daytime sleepiness, cataplexy, and poor nighttime sleep can impact your day-to-day life — including your ability to work. However, having narcolepsy doesn’t automatically make you eligible for these programs. The application process can also take a long time, and the decision rests heavily on documentation — which is why it’s worth understanding how it works now, even if you’re nowhere near applying.

This guide walks you through how to apply for narcolepsy disability benefits, what evidence you need to provide, and how to appeal if your application is denied.

How FMLA differs from SSDI

The Family and Medical Leave ACT (FMLA) provides short-term, unpaid leave from your job, while Social Security Disability Insurance (SSDI) provides long-term financial support when you’re unable to work. While FMLA protects your job while you take leave, SSDI replaces some income when you can’t work at all. The two programs serve different purposes, and some people use both — for example, taking FMLA leave first and applying for SSDI if symptoms prevent a return to work.

FMLA

Under FMLA, you can take up to 12 weeks of unpaid, job-protected leave in a 12-month period. Your group health insurance continues under the same terms while you’re on leave. You can take this leave all at once, or a little at a time.

Eligibility for FMLA depends on whether:

your employer has 50 or more employees who live within 75 miles of the worksite (public agencies and schools are typically covered)
you’ve worked at your job for at least 12 months
you’ve worked at least 1,250 hours in the past 12 months

You’ll apply for FMLA directly through your employer. They’ll review your request and let you know, typically within five business days, if you’re eligible.

SSDI

SSDI does not provide leave from your job. Instead, it provides monthly payments when you’re unable to work due to disability. The amount you receive is based on your earnings history.

Eligibility for SSDI depends on whether:

you’ve earned enough recent work credits (generally through at least 5 of the last 10 years of work)
you have a medical condition that prevents you from engaging in substantial gainful activity
your condition has lasted or is expected to last at least 12 months

SSDI payments can continue indefinitely as long as you continue to meet the criteria for a qualifying disability. After receiving SSDI benefits for 24 months, you also become eligible for Medicare.

Applying for SSDI is much longer and more involved than the application process for FMLA. It requires gathering evidence of your condition and going through an approval process, and there’s a five-month waiting period from the established onset date before payments begin.

Can someone get disability benefits for narcolepsy?

The Social Security Administration (SSA) keeps a list of qualified conditions that meet its definition of a disability for SSDI. These are conditions SSA considers severe enough to limit the ability to work. Although narcolepsy isn’t on this list, it could still qualify as a disability.

Whether someone will be approved for narcolepsy SSDI benefits depends on how much the condition limits the ability to work, and if there are other jobs a person can do instead. You must also have paid into SSDI, either through a past job or self-employment taxes.

How SSA evaluates narcolepsy

Because there’s no SSA narcolepsy listing, the SSA will make an individual determination of whether it considers the condition “severe.”

To do this, the agency will compare a person’s documentation (evidence) against its listings for neurological disorders. Essentially, it will review whether the limits the condition places on someone are comparable to the limits placed on people with other conditions on their list.

What to do now, even if you’re not applying for SSDI yet

Even if you don’t plan to apply for SSDI immediately, it’s still a good idea to start gathering evidence of your condition. That way, you’ll have it later if you need it.

Start a symptom log

Keep track of symptoms and how they affect daily activities and ability to work. More details on what to include can be found later in this guide.

Get copies of your records

Request copies of any sleep studies or medical appointments, and keep them all together. Put everything in a binder or electronic folder that can be accessed easily. These records may include:

Treatment history (medications tried, dosages, and how well they worked)
Any FMLA or accommodation paperwork from work
Notes about side effects that affect work performance

Understand what SSA looks for

SSDI decisions hinge on whether your condition prevents substantial work for at least 12 months despite treatment. Knowing this standard early will help you collect the right kind of evidence — not just medical records, but documentation of how symptoms affect your ability to function on the job.

What evidence can support a claim

To support a claim for narcolepsy disability benefits, medical and nonmedical evidence must be submitted. Medical evidence includes:

sleep study results
a specialist’s notes from appointments
a specialist’s notes about treatments that have been tried and how they worked

Examples of nonmedical evidence include:

written statements about how narcolepsy affects your daily life
statements from others who’ve witnessed how narcolepsy restricts you

Lastly, you’ll also need to show that narcolepsy has been affecting, or is expected to affect, your ability to work for at least 12 consecutive months. The documentation needs to demonstrate that despite treatment, you’re still experiencing symptoms that keep you from working.

How to document evidence

To collect nonmedical evidence, start a symptom log to record:

the date and time the symptoms occurred
what you were doing when symptoms began
what happened
what you couldn’t do or had to adjust as a result

Include as much detail as possible. For example, saying “I fell asleep twice” carries less weight than “On October 3 at 1 p.m., I was working on a task requiring sustained attention for 20 minutes. I fell asleep twice and was unable to complete the task.”

In addition to your own statements, collect statements from others, including, family, friends, or former coworkers or supervisors. Ask them to prepare a written statement that explains what they observed, when they observed it, and how they witnessed it affect your ability to complete a task.

What residual functional capacity means for a claim

As a part of a claim, the SSA will assess residual functional capacity, meaning what you’re able to do despite the limitations the condition places on you. It will assess this based on the documentation provided, considering:

medical statements about what you can still do
nonmedical statements describing any limitations

For example, narcolepsy may prevent you from doing work that requires driving, operating heavy machinery, concentrating for long periods, or working for long periods without breaks. However, you may still be able to do work that offers a flexible schedule or allows for working at home.

Based on all of the evidence provided, the SSA will determine whether you can continue doing the work you’ve done in the past, or if there’s other work you can do instead.

What to do if a claim is denied

Despite your best efforts to collect documentation for a narcolepsy disability claim, there’s a possibility it will be denied. If it is, you have the option to appeal.

The first step in the appeal process is requesting reconsideration, which can be done online. This must be done within 60 days of receiving a denial letter. If the deadline is missed, it must be for good cause.

If a request for reconsideration is denied, there are other appeal levels to pursue, inluding:

requesting a hearing with a judge
requesting a review with the Appeals Council
filing a federal district court action

You have the option to get legal help at any stage of the appeals process. USA.gov maintains a list of places providing free and low-cost legal aid. Generally, they cannot charge a fee without first getting written approval from the SSA.

Once you’ve chosen a legal professional, you’re required to notify the SSA in writing.

Lastly, keep in mind that even if a claim is approved, it will be reviewed on a regular schedule. Continue to keep records even after approval to prepare for the next review.

Narcolepsy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.