• Different types of disability benefits are available for people with multiple myeloma who qualify.
• Applications for disability depend on your inability to work.
• You may appeal if you are denied disability benefits.

Working can become impossible if you’ve developed multiple myeloma, given symptoms related to the condition such as fatigue, pain from bone lesions, and anemia. Effects from treatments can further contribute to your inability to work. “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.

When people with multiple myeloma can no longer work, many in the United States seek Social Security disability benefits to replace the income they’ve lost. 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 an abundance of rules and requirements for applying for disability. This article will help you prepare for and navigate the process.

Disability Benefit Programs in the United States

There are two federal disability programs 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 those who have a recent full-time work history. If you are 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 are approved, you can start receiving benefits in the next month. If you became disabled prior to your SSI being approved, you may also be eligible for back payments.

In most states, SSI eligibility qualifies you for Medicaid. There are some exceptions, 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, though eligibility criteria for SSI varies across states.

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

There is an asset cap to receiving Supplemental Security Income: $2,000 in assets 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.

It’s possible to get both SSDI and SSI if you have very limited funds and have a work history.

Defining Disability

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

• You likely will be ineligible for monthly benefits if you earn $1,260 or more per month. If you earn less than that amount, you may still be eligible for a reduced amount.
• You must be incapable of performing basic tasks required for most jobs, including standing for extended periods, walking, lifting, sitting, and remembering. You must not have been able 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 prevent working. Multiple myeloma is listed under 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 is not 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 possess.

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, and dates of marriage, divorce, or death
• Full names and dates of birth of your children
• 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, both past and present, that you have taken; along with any medical imaging, tests (e.g., biopsies, blood tests, urine tests, and protein-level tests), or other medical procedures (such as bone-marrow or stem-cell transplants)
• A description of how the symptoms of multiple myeloma impact your ability to do activities like shopping, cooking, cleaning, and other tasks of daily living

Total Employment History

• Earnings from the past year
• Any current employers or ones you have worked for in the past two years
• A complete work history from the past 15 years, including any jobs from before you became disabled
• Whether you are getting or intend to receive workers’ compensation
• Dates of military service

Documents

• Birth certificate
• Social Security card
• Proof of citizenship
• W-2 or other tax forms from the previous year
• Any medical records about your condition
• Proof of any workers’ compensation you have received

Members of MyMyelomaTeam shared advice for others seeking disability benefits, including “Get copies of your medical records” and “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 if you haven’t been denied in the past 60 days. You may use this approach if you were born in the United States, have never been married, and are between 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.

“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 Disability Application Rejection

The SSA takes an average of three to five months to process a disability benefits application. Getting approval can take even longer. Members of MyMyelomaTeam reported diverse 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 21 percent of those who applied for disability benefits between 2009 and 2018 were approved on their first attempt, according to the 2019 statistical report on the SSDI program. If your application is denied, you can appeal the decision. Reconsideration is the first step, during which your case will be evaluated by someone who did not participate in the first review of your application. From 2009 through 2018, about 2 percent of applications that weren’t approved the first time were approved during reconsideration.

If necessary, you have the option of filing a second appeal, which includes a hearing by an administrative law judge trained in disability laws. You may have a disability attorney represent you at this hearing. Some law firms specialize in disability hearings. In most cases, these disability lawyers do not require a set, upfront payment; rather, they will take a percentage of any benefits you do receive.

If you are denied at this level, you can ask the Appeals Council to review your case and make a decision on it. About 8 percent of SSDI claims between 2009 and 2018 were approved during a hearing with an administrative law judge or the Appeals Council. If you are denied at this level, the only remaining option is a federal court hearing.

Applying for disability benefits can be quite stressful. The more thorough your initial application is, the better your chances of being approved. MyMyelomaTeam members have offered plenty of useful tips for applying and appealing.

• “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 doctors, 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.”

Consider These International Resources

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 — Payments for People Living With an Illness, Injury, or Disability
• Canada — Disability Benefits
• Denmark — Disability Pension
• Finland — Disability Pension
• Great Britain — Personal Independence Payment (PIP)
• 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, UK — Benefits for People With Disabilities

Get the Support You Need

MyMyelomaTeam is the social network for people with multiple myeloma. Thousands of 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 for myeloma? Do you have any advice about the process? Comment below or start a conversation on MyMyelomaTeam.