Holding a job with myasthenia gravis (MG) can be tough. Statistics show that about half of adults with MG aren’t in the workforce.

If MG symptoms have you considering early retirement, you need a plan to support yourself. Applying for disability benefits may be a good option.

“I don’t know if, or how long, I’ll be able to work,” shared an MGteam member. “I don’t think I can stay at my job,” wrote another member. Another responded, “I couldn’t. I got disability.”

🗳️ If you’ve been approved for disability benefits, how many times did you have to appeal or reapply?

None (approved when I first applied)

One appeal

Two appeals

More than two appeals or reapplications

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Read on to learn the steps to apply for disability insurance benefits.

There’s more than one type of disability program in the United States. Which benefits you should apply for depends on your personal situation and work history.

If You’ve Worked

Many people are diagnosed with myasthenia gravis as adults, and they already have a history of working. Social Security Disability Insurance (SSDI), also known simply as disability insurance, is a monthly payment from the U.S. Social Security Administration (SSA).

Disability insurance can apply to people with myasthenia gravis who earned a certain amount of taxable income in five of the past 10 years and developed a qualifying disability that prevents them from working or limits their ability to work. If you’re under 24, you may qualify with a shorter work history.

Disability insurance payments — like regular Social Security payments — are based on how much income you earned while working. Payroll taxes fund these government programs. People who earned more during their working years will get higher monthly payments.

To be eligible for SSDI, a qualifying disability must prevent you from working for a year or more. If you’re able to work a limited amount, you may still be eligible for reduced disability insurance payments.

Full Medicare, which helps with medical expenses, is available to people who qualify for disability insurance two years after they stop working because of myasthenia gravis.

If You Haven’t Worked

Some people with severe myasthenia gravis may be eligible for another program called Supplemental Security Income (SSI). These monthly payments are available for people with a qualifying disability and very limited or no income or resources. You’ll need to provide proof of your assets to be eligible for SSI.

You might not qualify for SSI benefits if your spouse earns income. In some cases, their income may count against how much money you receive.

“I don’t know if, or how long, I’ll be able to work.”

— An MGteam member

People with myasthenia gravis who qualify for SSI payments may also qualify for other benefits. The Supplemental Nutrition Assistance Program (SNAP), commonly called “food stamps,” and Medicaid are two examples. SNAP and Medicaid can help cover food and healthcare costs.

To qualify for either SSDI or SSI benefits, your myasthenia gravis must limit your ability to work in specific ways.

Myasthenia gravis is considered a neurological disorder in the “Blue Book,” which has the guidelines for Social Security disability benefits.

People with MG must have at least one of the following issues to qualify for benefits:

You can also review the Blue Book online and talk to your doctor about your symptoms.

To support your MG disability claim for either SSDI or SSI, you’ll need to work with your neurologist. They can provide the medical documentation to support your case.

Some of the information and test results that may help your application include:

Your healthcare providers will have your medical records, including your test results and treatments for myasthenia gravis. Your medical evidence must prove that your condition is persisting even though you’re following your doctor’s treatment plan.

You can apply for SSDI benefits online. Or, you can call 1-800-772-1213 and make an appointment to apply in person. To apply for SSI, you have to visit the Social Security Office.

There’s information about how to apply for disability benefits on the SSA website. A Disability Starter Kit is available to help you prepare to complete the application and explain what you’ll need.

Once you apply, you’ll need to wait to hear back. For a new application, you may be waiting six to eight months before you get a decision. You can log in online to check the status of your application.

MGteam members have said that waiting can be the hardest part.

“Disability could take years to be approved,” said one member. “And you can’t work while you wait. It’s just like a never-ending spiral and roadblocks. I’m so frustrated.”

“Disability could take years to be approved. And you can’t work while you wait. It’s just like a never-ending spiral and roadblocks. I’m so frustrated.”

— An MGteam member

If you’re approved for disability insurance, the money is paid five full months after the date your disability began. Because payments are made one month after they’re due, you can expect to be paid in the sixth month following your disability date.

There are no statistics available on how often people with MG get approved for disability. But in general, it’s not unusual to get denied for benefits the first time you apply, only to be approved after submitting an appeal.

An appeal is when you challenge the denial. You ask for your case to be reviewed further and reconsidered for benefits.

Some people choose to hire a disability lawyer to help with the appeals process. A disability attorney can be especially helpful if you’re going to Administrative Law Court (the second step in making an appeal). Be sure to discuss fees and expectations before hiring an attorney to represent you.

Around 40 percent of cases appealed in Administrative Law Court end up getting approved. If you’re denied again, you can bring your case to federal court, where you may be more likely to get the outcome you want.