Holding a job while living with myasthenia gravis (MG) can be challenging. Damage to muscles and nerves can affect eyes, speech, memory, and muscle strength, among other problems, depending on which type of myasthenia gravis you have. MG symptoms may cause you or a loved one with myasthenia gravis to consider early retirement if working has become difficult. Research suggests that about 50 percent of adults between ages 35 and 60 with myasthenia gravis aren’t in the workforce.

MGteam members have discussed their concerns about working. “I’m not working at this time. My legs still are too weak, and I have some vision problems,” one member shared.

“I am having such a hard time with all this MG. Nobody understands. They say you just need to exercise more or do more,” another member reported. “My body says otherwise. I was recently terminated from my job in health care. And to be honest, I don’t know if, or how long, I will be able to work.”

“I don’t think I can stay at my job,” a third member wrote. Another responded, “I couldn’t. I got Disability.”

The possibility of losing income can be worrisome. Fortunately, if you have severe myasthenia gravis and it’s affecting your ability to work, you may qualify for benefits that can help you financially. You may be eligible for government disability benefits, or you may have retirement or disability benefits from your employer.

Here are some facts about disability benefits you may qualify for if you’re living with myasthenia gravis and can no longer work full time.

1. Social Security Disability Insurance Is for People With a Work History

Many people are diagnosed with myasthenia gravis as adults and have a history of working. Social Security Disability Insurance (SSDI), also known simply as “Disability,” is a monthly payment from the U.S. Social Security Administration (SSA). SSDI can apply to people with myasthenia gravis who earned a certain amount of taxable income in five of the past 10 years and develop 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.

SSDI payments — like regular Social Security payments — are based on how much income you earned while working, because these government programs are funded by income tax. People who earned more during their working years will receive higher monthly payments.

A qualifying disability must prevent you from working for a year or more to be eligible for SSDI. If you’re able to work a limited amount, you may still be eligible for reduced SSDI payments. Full Medicare, which helps with medical expenses, is available to people who qualify for SSDI two years after they stopped work due to myasthenia gravis.

2. Supplemental Security Income Is for People Who’ve Had Little or No Income

Some people with severe myasthenia gravis may be eligible for Supplemental Security Income (SSI), which is another SSA program. These monthly payments are available for people with very limited or no income and financial resources who also have a qualifying disability. You might not qualify for SSI benefits if you have a spouse with income, or their income may count against the amount of money you receive.

People with myasthenia gravis who qualify for SSI payments may also qualify for other benefits such as the Supplemental Nutrition Assistance Program (SNAP) — commonly known as “food stamps”— and Medicaid. SNAP and Medicaid can help cover food and health care costs.

You will need to provide proof of your assets to be eligible for SSI.

3. There Are Disability Guidelines for SSDI and SSI Benefits

To qualify for either SSDI or SSI benefits, your myasthenia gravis must limit your ability to work in specific ways, which can include problems with physical functioning or cognitive (mental) dysfunction.

Myasthenia gravis is considered a neurological disorder in the “blue book” for Social Security disability benefits, which is a guideline medical eligibility. If you have myasthenia gravis, medical qualifications for either SSDI or SSI benefits include one of the following conditions:

• Muscle weakness and motor function problems — Lack of control in two or more arms or legs, limiting the ability to sit, stand, walk, or use hands for functions such as typing
• Neuromuscular and bulbar problems — Difficulty breathing, swallowing, eating, or drinking and requiring machine-assisted ventilation or nutrition through a feeding tube
• Moderate physical impairment along with problems thinking or remembering, interacting with other people, concentrating, or adapting to or managing in a work environment

4. You’ll Need To Provide Evidence of Disability

To support your MG disability claim for either SSDI or SSI, you’ll need to work with your neurologist to provide medical evidence that proves you have a disability. Some of the information and test results that may help your application include:

• Medical history, including hospitalizations
• Medications that you take, including those that didn’t work for you
• Blood and antibody tests
• Neurological tests
• Electromyography (EMG) tests
• Edrophonium tests
• Imaging tests such as MRI and CT scans

Your health care providers will have your medical records, including your test results and treatments for myasthenia gravis. You must be able to prove that your condition is persisting despite prescribed treatment and meets the requirements that make you eligible for benefits. Depending on your particular medical condition, disability benefits may be given short term or long term.

“Unfortunately, due to progression, now refractory gMG, and increased hospital visits — many life-threatening — I was put on short-term disability. As it stands, I will likely be put on long-term disability come July,” wrote an MGteam member with generalized myasthenia gravis (gMG). “My vision (blurred/double vision) and speech have become a constant issue, which makes it impossible to continue working.”

You can get more information on how to apply for disability benefits on the SSA website. Some people choose to have a disability attorney help with the applications. Keep in mind that law firms generally charge a fee for these services, which you’ll want to discuss before hiring a disability lawyer.

5. You May Be Able To Access Your Retirement Account Without Penalty

Retirement accounts such as individual retirement accounts, 401(k) plans, and 403(b) plans generally have penalties if you withdraw money before age 59 1/2. However, if you have a serious disability due to myasthenia gravis, you may be able to access your retirement benefits early without penalty. Your particular plan will have guidelines to help you determine if you qualify for early withdrawals.

6. Your Employer May Provide Disability Insurance

Many employers offer short-term disability insurance, and about half of large and midsize companies offer long-term disability insurance that typically covers about 60 percent of a salary. Be sure you’re up to date on what your employer may provide. You can talk to your human resources manager or a supervisor to find out more about benefits that you may be entitled to.

7. You Can Request Accommodations To Help You Continue Working

You may feel uncertain about your ability to work because of myasthenia gravis and whether it’s time for you to retire. Depending on your needs, your employer may be able to provide accommodations for your job that make work easier for you. Workplace accommodations that can help people with myasthenia gravis manage better include:

• Periodic breaks to rest or stretch
• Grip aids to help with holding small objects
• A flexible environment so you can periodically sit or stand at your workstation
• An ergonomic chair to comfortably support your body
• Modifications for what you need to lift
• Work-at-home options

The Americans with Disabilities Act requires employers to make reasonable accommodations that allow people with disabilities to perform their jobs. Talk to your human resources manager or supervisor if you think certain changes may allow you to continue working.

Talk to Others Who Understand

MGteam is the social network for people with myasthenia gravis and their loved ones. On MGteam, more than 1,800 members come together to ask questions, give advice, and share their stories with others who understand life with myasthenia gravis.

Have you applied for disability benefits due to your myasthenia gravis? Do you have tips for others who are going through the process of applying for disability? Share your experience in the comments below, or start a conversation by posting on your Activities page.