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A desmoid tumor diagnosis doesn’t automatically qualify you for disability benefits, but that doesn’t mean you shouldn’t apply. Many people with this and other medical conditions experience symptoms or treatment-related side effects that make it difficult or even impossible to work. If you’re unable to maintain full-time employment due to a desmoid tumor diagnosis, you may be eligible for help through the Social Security Administration (SSA).
The United States government offers two primary disability benefit programs through the SSA. People who are unable to work due to a medical condition or other qualifying disability may be eligible for one or both programs, depending on their work history and financial situation.
Social Security Disability Insurance (SSDI) provides benefits to people who have paid Social Security taxes by working but are no longer able to work due to a disability. Eligibility is based on the length of time worked rather than financial need. In some cases, SSDI benefits may be available to family members of someone who qualifies.
How long you need to have worked to qualify for SSDI depends on your age and when your disability began. Additionally, the amount of income you need to have earned to qualify changes annually. For the most current information about SSDI eligibility and work requirements, visit the SSA website.
If you qualify for SSDI, you’ll be eligible for Medicare after 24 months.
Supplemental Security Income (SSI) is a needs-based benefit program designed to help people who have limited income and financial resources. Unlike SSDI, SSI does not require a prior work history or paying into Social Security. Eligibility is based on income and available resources, as well as disability status, blindness, or age.
In most states, an SSI application is also an application for Medicaid. So if you qualify for SSI, you will likely also be eligible for Medicaid. However, some states require a separate application.
To learn more about SSI, including what assets count as available resources and what the 2026 income limits are, visit the SSA website.
The Social Security Administration maintains a Blue Book that outlines impairments considered severe enough to prevent someone from working. The guide includes certain types of cancer and other serious medical conditions.
Desmoid tumor isn’t listed in the Blue Book. However, a person with a desmoid tumor diagnosis may still qualify for disability benefits if they can show that their symptoms, side effects, and long-term complications from medical treatments limit their ability to work for 12 months or longer.
When the SSA approves a disability application for someone who doesn’t have one of the conditions listed in the Blue Book, it’s called a medical vocational allowance. People with a desmoid tumor diagnosis may qualify for this type of approval if they can provide medical evidence showing that their condition prevents them from working full time.
To determine whether you qualify for a medical vocational allowance, a disability examiner will review your medical records. They will also consider factors such as your age, work experience, and education to assess what type of work, if any, you may still be able to perform. This is known as your residual functional capacity (RFC).
If the examiner determines that you are unable to perform your previous job or transition to any other type of full-time work, you may be approved for disability benefits.
Despite not being included in the Blue Book, desmoid tumor and its treatments can cause serious limitations that affect a person’s ability to work.
Examples include:
If you decide to apply for Social Security disability benefits under a medical vocational allowance, consider scheduling an appointment with your healthcare provider. They can help document your symptoms, organize your medical records, and provide supporting medical evidence to strengthen your disability claim.
Before applying for disability benefits, it can be helpful for you to become familiar with the eligibility requirements and application process. You may want to review the disability application process for SSDI and the Social Security benefits questionnaire for SSI online.
When you’re ready to apply, you can submit your application in one of three ways:
Response times can vary, but many people receive a decision six to eight months after submitting their disability claim. You can check the status of your application by creating an online my Social Security account.
If you need help navigating the application process, consider asking a trusted family member, social worker, disability lawyer, or medical benefits professional for guidance and support.
Only about 38 percent of initial disability applications are approved, so it’s possible that your claim may be denied. If this happens, try not to feel discouraged. There’s an appeals process for this exact reason, and approval rates are often higher for people who file an appeal.
If you didn’t work with a law firm or attorney specializing in disability claims during the initial application process, this may be a good time to consider doing so. Professionals who understand the appeals process can advocate for you and help present your case more effectively.
To find a disability lawyer, ask a social worker at your medical center for a referral or to connect you with local resources. You can also search for affordable legal aid services online at usa.gov/legal-aid.
The application and appeals process for disability benefits can require time, effort, and follow-up, but many people find it worthwhile if desmoid tumor significantly affects their ability to work.
Having a financial plan for living with desmoid tumor can be just as important as having a treatment plan. If you’re unable to work, you and your loved ones may need to find ways to manage medical bills and living expenses. In addition to Social Security disability benefits, there are nonprofit organizations and community groups that offer financial assistance, educational resources, and support.
Organizations to consider include:
Exploring multiple sources of support can help reduce financial stress and allow you to focus more fully on your health and well-being. Once you’ve submitted your disability claim, consider exploring other options for assistance while you wait. An oncology social worker or desmoid tumor support group can help point you in the right direction. Another option is enrolling in a clinical trial for desmoid tumor. Your healthcare team can inform you of any clinical trials that are available to you.
On MyDesmoidTumorTeam, people share their experiences with desmoid tumors, get advice, and find support from others who understand.
Have you applied for disability benefits with desmoid tumor? Let others know in the comments below.
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