While applying for this benefit is challenging for those with migraine, the process is getting better

Getting Social Security Disability Insurance (SSDI) can be difficult for anyone who applies. But for people with migraine, it can be even more challenging. Dr. Robert Shapiro, migraine advocate and professor of neurological sciences at the University of Vermont, says the current process is stacked against those with migraine. “We’ve been working very hard to try to change all that with some measured success,” he says. “It’s not completely remedied by any means, but it’s much better today than it was a year ago.”

Despite the challenging process, Dr. Shapiro encourages patients to talk about migraine and advocate for themselves so they can receive the support they need. We asked him to walk us through the application process, potential roadblocks and tips to boost your chances of success.

What is the process of getting SSDI?

Social Security Disability Insurance (SSDI) provides assistance when someone develops a disability or illness that makes them unable to work. Workers give a portion of their paychecks to SSDI. They can then access that benefit if they, or someone in their family, becomes disabled. “Typically, if you are awarded a benefit, it would be in the neighborhood of around $15,000 a year,” says Dr. Shapiro. SSDI is only available to those who give a portion of their paychecks to the program. It provides more monthly income than Supplemental Security Income (SSI), which provides financial assistance to older adults and the disabled.

You can apply for SSDI benefits online or by calling the National Social Security Administration office toll-free at 1-800-772-1213. However, the Social Security Administration (SSA) recommends that applicants review the Adult Disability Checklist to collect the documents and information necessary to complete the application ahead of time. Here’s an overview of the process:

  1. Show you’re unable to work. You must show you are unable to work and earn a liveable income long-term as the result of migraine. The official term is being unable to perform “substantial gainful activity,” explains Dr. Shapiro. “You can’t earn enough money to be able to live because of the disease that you have,” he says. However, you or a family member must have had a recent job and paid into the program to be considered insured.
  2. Prove that you have a Medically Determinable Impairment (MDI). An MDI is a medical condition that will last at least a year, or might result in death, and limits your ability to be employed, Dr. Shapiro says. In order to prove that you have a MDI, you must provide evidence of the severity of your condition. This evidence can include test results or other medical evidence, including statements from your treating physicians. The results of an SSA-ordered exam also qualify. This step can be difficult for those with migraine because symptoms determine its severity, not physical examinations or laboratory findings.
  3. Demonstrate your level of impairment. You need to compare what migraine makes you unable to do to one of the listings from the Social Security Administration’s Blue Book. This guide contains a set of standards regarding the severity of different diseases and disabilities. This step can be difficult for those with migraine because SSA does not list migraine in its qualifying neurological disorders and points to epilepsy as the closest disease. “You have to compare the things that you are unable to do because of migraine to a standard for a completely different disease, which is unfair,” says Dr. Shapiro.
  4. Appeal the findings. If you are initially denied SSDI, you may appeal by resubmitting your evidence with new medical records and claim forms. The SSA will then make a second ruling. If your appeal is denied, you can request to have your application reviewed by the Appeals Council. A disability lawyer can help you navigate this process.

Overcoming Roadblocks

Symptoms not counting as evidence makes the process of applying for SSDI especially difficult for those with migraine, Dr. Shapiro says. A further challenge is migraine is not a distinct listing as a disability. That results in fewer people applying and fewer getting accepted. Migraine is the second leading cause of disability in the U.S., accounting for more than 5.5% of all disability. But only 0.3% of people who apply for SSDI do so because of migraine. Those who apply are half as likely to have their application approved as those with a different disease or disorder.

However, the potential for receiving the SSDI benefit for migraine has improved recently. After the attendees of Headache on the Hill 2019, an annual advocacy event hosted by the Alliance for Headache Disorders Advocacy, asked for a guidance document to help people with migraine apply for SSDA, the SSA published one.

The document provides a guide for how those with migraine should use existing processes and listings to qualify for SSDI. “It’s the first guidance document of any form really that’s ever been available for people with migraine,” explains Dr. Shapiro.

This may be just a small step toward making the process easier. But it can also serve as encouragement for people living with migraine to apply and keep advocating for themselves.

Three Tips for Success

These tips will help you navigate the SSDI process:

  • Build a support team. The best place to start is with your trusted healthcare provider. Your doctor can write a statement outlining your medical condition and how it affects your life. You might not be experiencing a migraine attack during the SSA-ordered examination. So your physician’s statement will be an important part of your application. “Educating your doctor about the fact that your difficulties are not there all the time, that they change over time and that they’re not predictable, is an important thing,” says Dr. Shapiro. If your doctor assisted other patients through the process, they may also have an understanding of how to overcome challenges. While not all patients are financially able to hire a lawyer, getting legal support is an option to consider. A disability lawyer may be able to ensure the SSA receives and processes all the necessary information appropriately.
  • Keep records. Just as you likely keep track of important medical information, be sure to write down detailed notes describing your symptoms and impairments on a daily basis. Also record all doctors’ appointments and medications you have tried. Be specific and thorough. “I think people who are good record keepers have a higher chance of being successful in this process,” says Dr. Shapiro.
  • Stay optimistic. Advocacy can be an important part of dealing with a chronic disease like migraine. Each individual person who applies for SSDI and seeks help for their chronic pain helps pave the way for others who may need SSDI in the future.

If you’re unable to work due to disabling migraine, SSDI exists to help people like you. Use Dr. Shapiro’s tips or download our step-by-step guide here to set yourself up for success.

The American Migraine Foundation is committed to improving the lives of those living with this debilitating disease. For more of the latest news and information on migraine, visit the AMF Resource Library. For help finding a healthcare provider, check out our Find a Doctor tool. Together, we are as relentless as migraine.