Sometimes, even the best accommodations at work aren’t enough to help you keep your job when you have narcolepsy. Excessive daytime sleepiness and cataplexy (a sudden loss of muscle tone when feeling strong emotion) may make working steady hours impossible.
“I would be in the middle of a transaction and fall asleep standing up at the bar in front of my customer,” one MyNarcolepsyTeam member said. “HR expressed its concern and said I was a liability to the company, and I was let go from my job.”
“Working has become increasingly difficult, as I have extreme sleepiness and sometimes cataplexy. Starting to forget things easily,” another MyNarcolepsyTeam member shared.
“I am terrified of losing my job,” a third member admitted. “I am late every day because I simply can't shake the brain fog in the morning. I am just so exhausted, I can’t get going. And I don’t feel safe to drive until it passes.”
If narcolepsy is affecting your ability to work, it’s important to discuss that with your neurologist, sleep specialist, or health care team so they can help you manage symptoms. However, for some people with narcolepsy, working may become too difficult.
When people with narcolepsy can no longer work, many in the United States seek Social Security disability benefits. Disability benefits help replace lost income when people with narcolepsy have to leave their jobs.
The process of applying for a disability claim can feel intimidating. If you apply and aren’t approved, which is a common experience, that can also be challenging. “I tried a while back and got rejected, [but I’m] thinking about trying again,” said one MyNarcolepsyTeam member.
Understanding the process ahead of time can make applying easier. Here's what the Social Security Administration (SSA) considers to determine if a person is too disabled to work, and how to go through the application process.
There are two different federal disability programs in the United States, Social Security Disability Income (SSDI) and Supplemental Security Income (SSI). To qualify for either program, you must have a disability that prevents you from working.
Social Security Disability Income provides benefits to those who have previously had full-time work for a required period in the recent enough past. SSDI benefits are funded through payroll taxes. If you are approved, you can receive benefits six months after you become disabled. If you have been disabled for at least a year, you may be able to get back payments of disability benefits for a 12-month period. You are eligible for Medicare 24 months after you start receiving SSDI.
Supplemental Security Income gives disability benefits to those who have not worked the required time period and have a low income. If you are approved, you can receive benefits in the next month. You may also be eligible for back payments of SSI if you became disabled before your SSI approval.
In most states, SSI eligibility qualifies you for Medicaid. In Alaska, Idaho, Kansas, Nebraska, Nevada, Oregon, Utah, and the Northern Mariana Islands, you have to apply for Medicaid separately from SSI, but the criteria for both are the same. Eligibility criteria for SSI recipients varies across states.
Almost every state provides an SSI supplement. Arizona, Mississippi, North Dakota, and West Virginia do not. The eligibility rules for supplements vary by state.
There is an asset cap for receiving Supplemental Security Income. If an individual has more than $2,000 of assets (or a couple has more than $3,000 of assets), they lose eligibility. The Social Security Administration has a list of which assets are considered.
It’s possible to get both SSDI and SSI if you have very limited funds and have a work history.
To determine whether someone is disabled enough to be eligible for disability benefits, the Social Security Administration will consider several factors. The following criteria will be examined when you apply:
Applying for disability benefits for narcolepsy will require a lot of paperwork. The application information you’ll need to provide is listed on this checklist provided by the Social Security Administration. Below is a summary of the basic information required for the process.
You can apply for SSDI online if you aren’t currently receiving benefits and if you haven’t been denied in the past 60 days. You can apply for SSI online if you have never been married, you were born in the United States, and you are between the ages of 18 and 65. If you don’t meet any of those criteria, you can still apply at a local Social Security office or over the phone.
Processing a disability benefits application takes an average of three to five months. For many people, the approval process is even longer. “I did finally get disability, but it took three years,” one MyNarcolepsyTeam member shared.
Between 2008 and 2017, only 22 percent of people in the U.S. who applied for disability benefits received them on their first attempt. If your application for benefits is denied, you can appeal the decision. The first step is reconsideration, when your case will be evaluated by someone who did not take part in the first evaluation. About 2 percent of applications that weren’t approved the first time were approved during reconsideration in the years 2008 through 2017.
If necessary, you have the option to file a second appeal — which includes a hearing by an administrative law judge. These are judges trained in disability laws, who will hear all the evidence in your disability case.
You may have a disability attorney represent you at this hearing. A disability attorney may be able to help you determine if other tests might strengthen your application. One MyNarcolepsyTeam member recommended hiring a disability lawyer to assist in your case: “My receiving disability was due to hiring an attorney who was experienced in disability cases.”
If you are denied at this level, you can ask the Appeals Council to look at your case and make a decision on it. About 9 percent of successful SSDI claims between 2008 and 2017 were approved during a hearing with the administrative law judge or the Appeals Council. If you are denied at this level, the only remaining option is a federal court hearing.
If you’d like to research more about disability benefits in countries outside of the United States, check out these resources, listed by country:
By joining MyNarcolepsyTeam, the social network and online community for those living with narcolepsy, you gain a support group of more than 5,500 members who understand what you’re going through.
Has narcolepsy affected your ability to work? Have you applied for Social Security disability benefits for narcolepsy? Do you have any advice about the process? Comment below or start a conversation on MyNarcolepsyTeam.