Getting Disability Benefits for Narcolepsy

If your narcolepsy significantly affects your productivity at work, you might be able to get disability benefits.

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Narcolepsy is a sleep disorder that causes extreme drowsiness during the day. "Narcoleptics" (people suffering from narcolepsy) can fall asleep at any time, making the illness unpredictable and dangerous.

Narcoleptics can experience other alarming symptoms, including:

  • sleep paralysis (where you're unable to move your body while waking up)
  • visual and audio hallucinations while falling asleep or waking up, and
  • cataplexy (a sudden loss of muscle tone that can make you feel weak or lose muscle control) during exercise or when your emotions are high.

There's no cure for narcolepsy, but medications and lifestyle changes (like scheduled naps) can sometimes make the symptoms manageable. After a brief period of sleep, someone with narcolepsy will usually wake feeling refreshed.

Is Narcolepsy a Disability?

Although it can be dangerous for someone with narcolepsy to drive or operate machinery, the Social Security Administration (SSA) doesn't have an official disability listing for narcolepsy in its list of impairments (called the Blue Book). The impairments included in the Blue Book are conditions Social Security considers serious enough to automatically qualify someone for disability benefits.

Can You Get Disability for Narcolepsy?

Because it's not in the Blue Book, you can't automatically qualify for disability benefits for narcolepsy. It's still possible to get Social Security disability insurance (SSDI) benefits or Supplemental Security Income (SSI) benefits for narcolepsy. But the other two other ways of qualifying for disability benefits often require the help of a disability lawyer or advocate. You might be able to either:

  • prove your condition "equals" a listing, or
  • prove your condition makes you unable to do any kind of full-time work.

To equal a listing, you must show Social Security that your symptoms are as severe as those of a listed condition. For instance, the symptoms of narcolepsy are sometimes similar to those caused by frequent dyscognitive seizures (seizures that don't involve convulsions but do cause a lack of awareness). If your symptoms are similar enough to the symptoms of the disability listing for epilepsy (listing 11.02), Social Security might consider your condition to be equivalent to epilepsy. (Learn more about meeting the disability listing for epilepsy.)

If you aren't able to "equal" the epilepsy listing, the SSA will try to determine if there are any jobs you can safely and productively perform despite your narcolepsy. To decide whether your narcolepsy limits you too much to work, Social Security will look at your "residual functional capacity," or RFC.

What Is Your Residual Capacity?

Your residual functional capacity, or RFC, is Social Security's assessment of what you can do despite your restrictions. It also refers to the name of the detailed report that Social Security creates on how your narcolepsy affects your ability to perform work-related activities.

You can also have the doctor who's treating you complete an RFC assessment or medical source statement. A well-written, well-supported RFC form or statement can help you win your claim for disability based on narcolepsy. Even though Social Security will accept medical evidence from any licensed physician who treats you, the agency will give more weight to a doctor who specializes in narcolepsy. So ask your neurologist to fill out an RFC form.

(Learn more about how Social Security uses RFCs in determining medical eligibility for disability.)

What Should My RFC for Narcolepsy Say?

Your RFC or medical source statement should explain in detail how your narcolepsy prevents you from working. For example, you might need to take frequent and unscheduled breaks throughout the day because of your narcolepsy. And because scheduled naps might help ease your symptoms, your doctor might write that your employer should provide you with a place to take short naps at regularly scheduled intervals. (Of course, most employers are unwilling to provide this type of accommodation.)

Your neurologist should also explain in your RFC how your narcolepsy affects your ability to:

  • stand and walk
  • sit
  • push and pull, and
  • lift and carry objects.

For example, if you suffer from cataplexy (sudden weakness and/or loss of muscle control) as a result of your narcolepsy, it could be particularly dangerous for you to engage in strenuous activity. And because narcolepsy causes extreme drowsiness, you probably also couldn't do jobs that required you to:

  • climb ladders
  • drive or operate heavy machinery, or
  • engage in any type of work where safety is an issue.

If you take medication to treat your narcolepsy, you should make sure your doctor documents any side effects. Your doctor should then report on your RFC how your narcolepsy medication impacts your mental abilities, including:

  • focusing
  • completing tasks, and
  • following directions.

What Kind of Medical Evidence Do I Need for Disability?

An RFC is only as good as the medical evidence that supports it. So it's important that you or your doctor provide Social Security with as much medical evidence as possible to support your diagnosis of narcolepsy, including evidence of your symptoms and the effects of the treatments you've tried. You should provide the SSA with the results of all testing, including:

  • sleep studies
  • EEGs, and
  • genetic tests performed by your treating physicians.

Also, you should provide Social Security with:

  • copies of any sleep journals that you've kept to document your sleep patterns
  • medication lists (along with a description of any side effects you experience), and
  • copies of your doctor's notes from your appointments for treatment and the diagnosis of your narcolepsy.

What If I'm Working When I Apply for Benefits?

Working when you apply for disability benefits might be okay as long as you're not earning too much money. When you apply for SSDI or SSI disability, Social Security must determine whether or not you're working above what the agency calls the "substantial gainful activity" or SGA level. For 2022, the SGA amount for SSDI or SSI applicants is $1,350. It's $2,260 for blind SSDI applicants. (SGA limits don't apply to blind SSI applicants.)

That means if you earn $1,350 or more a month, Social Security will find that you're capable of doing substantial gainful activity (work), and your claim will be denied. But if you're working below the SGA level (say you can only work 10 hours per week because of your disability), you could still qualify for benefits.

How to Apply for Disability for Narcolepsy

Applying for Social Security disability isn't hard to do, but you'll need to provide a lot of information. And you can apply in person at your local Social Security office, by phone at 800-772-1213 (TTY 800-325-0778), or online at SSA.gov.

No matter which method you choose, it'll help if you have some information already gathered when you start. Social Security will need:

  • your name, address, and Social Security number (SSN)
  • your spouse's name, address, and SSN (if you're married)
  • your work history, including:
    • dates of employment
    • employers' names, and
    • your job title (and the type of work you performed)
  • your income for each of the last three years
  • your medical information, including:
    • the names of all the doctors you've seen
    • information about the hospitals you've visited, and
    • the types of medical treatment you've received.

Don't delay filing your disability application because you don't have all the information and documents you need. The Social Security representative assigned to your case can help gather anything you're missing.

Learn more about the Social Security disability application process.

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