Working can become challenging if you’re living with multiple myeloma. Symptoms such as fatigue, pain from bone lesions, and anemia may make it hard to keep a job. Side effects from treatments can also make working difficult. “It’s getting harder to work 40 hours a week,” one MyMyelomaTeam member reported.

“All of my energy goes into working, and there isn’t any left at the end of the day,” a second member shared.

In the United States, many people with multiple myeloma who can no longer work seek Social Security disability benefits to replace their lost income. Applying for a disability claim can feel daunting, as can the prospect of appealing a rejected application.

The U.S. Social Security Administration (SSA) has numerous rules and requirements for applying for disability. This article will help guide you through the process.

Disability Benefit Programs in the United States

Two federal disability programs are offered in the United States: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Receiving either of these benefits requires that you have a qualifying disability that stops you from working.

Funded through payroll taxes, SSDI provides benefits to people who have a recent full-time work history. If you’re approved, you can receive benefits six months after your disability was diagnosed. After receiving SSDI for 24 months, you’ll become eligible for Medicare.

SSI provides disability benefits to low-income individuals, regardless of work history. If you’re approved, you can start receiving benefits in the next month. If you became disabled before your SSI application was approved, you may also be eligible for back payments.

In most states, SSI eligibility qualifies you for Medicaid. However, in Alaska, Idaho, Kansas, Nebraska, Nevada, Oregon, Utah, and the Northern Mariana Islands, you have to apply for Medicaid separately. The criteria are the same for both, although SSI eligibility criteria vary across states.

Most states provide an SSI supplement, with these exceptions: Arizona, Arkansas, Mississippi, North Dakota, Tennessee, and West Virginia. The eligibility rules for supplements vary by state.

There is an asset cap for receiving Supplemental Security Income: $2,000 for individuals or $3,000 for couples. The Social Security Administration has a list of which assets (“resources”) are considered. Your primary residence, household belongings, and one personal vehicle are not counted among these assets.

You may qualify for both SSDI and SSI if you have very limited funds and a work history.

Is Multiple Myeloma a Disability?

In determining your eligibility for disability benefits if you have myeloma, the Social Security Administration will evaluate several factors, including the following:

• You likely will be ineligible for monthly benefits if you earn $1,620 or more per month.
• You must be incapable of performing basic tasks required for most jobs. These requirements include standing for extended periods, walking, lifting, sitting, and remembering. You must have been unable to perform these tasks for at least 12 months.
• You must have a recognized disability. The Social Security Administration provides a Listing of Impairments that may prevent individuals from working. Multiple myeloma is listed as a type of cancer (malignant neoplastic diseases). Even if your specific medical condition isn’t listed, you may still be eligible.
• You must be unable to do any work you did previously. If you’re applying for SSI, having a work history isn’t necessary.
• You must be unable to do any other form of sustainable work, or what the SSA calls “substantial gainful activity.” The Social Security Administration will consider your diagnosis, age, medical history, education, and work history, as well as any other marketable skills you might have.

Can You Get a Multiple Myeloma Compassionate Allowance?

The Social Security Administration’s Compassionate Allowance program quickly identifies certain illnesses that meet the disability definition. Most of these conditions are cancers, rare pediatric illnesses, and adult brain disorders. However, multiple myeloma is not included on the list of Compassionate Allowances conditions. This means your disability application may not be fast-tracked, but you can still apply for disability through the standard SSI or SSDI process.

Is MGUS a Disability?

Although it isn’t a cancer, monoclonal gammopathy of undetermined significance (MGUS) is a risk factor for myeloma. Some people with MGUS may wonder whether they qualify for disability. MGUS isn’t listed on the Social Security Administration’s Listing of Impairments. However, people with MGUS may still be eligible for disability, depending on whether they’re unable to work and meet the other disability criteria.

Applying for SSDI and SSI

People with multiple myeloma should expect to fill out a lot of paperwork in applying for benefits. The Social Security Administration offers a checklist of necessary application information. Below is a summary of what you’ll need to provide.

Information About Yourself and Your Family Members

• Your full legal name, date of birth, and Social Security number
• Full names and dates of birth of your current or previous spouses, as well as dates of marriage, divorce, or death
• Information about workers’ compensation or other benefits you’re receiving
• Bank account information

Medical Evidence About Your Multiple Myeloma

• The name and contact information for your oncologist and other medical providers who can discuss your condition
• A complete list of medications you take and why
• A list of your medical tests, along with dates they were done and who ordered them
• Any records related to your medical diagnosis

Complete Employment History

• A comprehensive work history from the past 15 years, including any jobs held before becoming disabled
• Any workers’ compensation you’re getting or intend to receive
• Education or training you had and the dates you received it

Required Documents

• A copy of your birth certificate
• U.S. military discharge papers (for those who served before 1968)
• Proof of citizenship
• W-2 or other tax forms from the previous year
• Any medical records about your condition
• Proof of any workers’ compensation benefits you’ve received

Members of MyMyelomaTeam have shared advice such as the following for others seeking disability benefits:

• “Get copies of your medical records.”
• “Have your doctor, if he can, write a permanent disability letter so you can send it to SSI.”

You can apply for SSDI online if you aren’t currently receiving benefits and haven’t been denied in the past 60 days. You may use this approach if you’re at least 18 and can’t work due to a medical condition that’s projected to last one year or more or may result in death. If you don’t meet any of those criteria, you can still apply at a local Social Security office or over the phone.

“I went to the Social Security office to apply for early benefits. [A worker] had me set up with a phone call to get disability,” one MyMyelomaTeam member said.

Appealing a Denied Disability Application

The SSA takes an average of seven months to process a disability benefits application. Getting approval can take even longer. Members of MyMyelomaTeam have reported varied experiences.

“Finally got disability, after months of fighting,” one member shared.

“I applied for Medicaid and SS disability and it only took a month; I was very surprised that it didn’t take longer,” wrote a second member.

Only 19 percent to 21 percent of applicants for disability benefits between 2013 and 2022 were approved on their first attempt, according to the 2023 SSDI statistical report. If your application is denied, you can appeal the decision. Reconsideration is the first step. Your case will be evaluated by someone who did not participate in the first review of your application. From 2013 through 2022, about 2 percent of disability cases that weren’t approved the first time were approved during reconsideration.

If necessary, you may file a second appeal, which includes a hearing before an administrative law judge trained in disability laws. You may have a Social Security disability attorney represent you at this hearing. Some law firms specialize in handling disability hearings. In most cases, these disability lawyers don’t require a set, up-front payment — instead, they’ll take a percentage of any benefits you do receive.

If you’re denied at this level, you can ask the Appeals Council to review and decide your case. About 7 percent of SSDI claims between 2013 and 2022 were approved during a hearing with an administrative law judge or the Appeals Council. If they deny your appeal, the only remaining option is a federal court hearing.

The process of applying for disability benefits can be stressful. The more thorough your initial application is, the better your chances are of being approved. MyMyelomaTeam members have shared valuable tips for applying and appealing, such as:

• “You can get an attorney, and they will get paid when [they win]. Find an attorney that will do the work himself, not give it to a subordinate, and make sure [they are] in your state.”
• “Keep all the information about your case; you’ll need proof from healthcare providers, medical expenses, testing done, and so forth.”
• “Apply for SSI after you have confirmed documentation from an oncologist. Get reports and fax them to the SSA, and you’ll get the approval quickly.”
• “Myeloma is on the list [of eligible conditions] to get permanent disability. Keep copies of hospital visits, doctor visits, labs, and X-rays so you can fax them in.”

International Resources To Consider

If you’d like to research more about disability benefits in countries outside of the United States, check out these resources, listed by country:

• Australia — Living With Disability
• Canada — Disability Benefits
• Denmark — Disability Pension
• Finland — Disability Pension
• Iceland — Disability Pension in Iceland
• Ireland — Operational Guidelines: Disability Allowance
• The Netherlands — Invalidity Benefits
• New Zealand — Disability Allowance
• Norway — Disability Benefit
• South Africa — Old Age, Disability, and Survivors
• Sweden — Benefits for People With Disabilities
• United Kingdom — Personal Independence Payment (PIP)

Get the Support You Need

MyMyelomaTeam is the social network for people with multiple myeloma. On MyMyelomaTeam, more than 27,000 members come together to ask questions, give advice, and share their stories with others who understand life with myeloma.

Have you applied for Social Security disability benefits due to myeloma? Do you have any advice about the process? Post a comment below, or start a conversation on your Activities page.