Sometimes, even the best accommodations at work aren’t enough to help you keep your job when you have endometriosis. “Because of the pain, I'm generally behind [on] my paperwork because I'm exhausted from my visits. I lose concentration. I have a great manager at the moment, but she is leaving soon. I had to turn down an amazing job opportunity partly due to it,” a MyEndometriosisTeam member commented.

When people with endometriosis can no longer work, many in the United States seek Social Security disability benefits. However, the U.S. Social Security Administration (SSA) does not include endometriosis among conditions for disability eligibility on its Listing of Impairments. Several MyEndometriosisTeam members have expressed frustration about this omission. “Why isn't endo considered a disability yet?” one member asked.

“Endometriosis is a disability. We need disability status for it. I'm so angry it is not,” another commented.

Fortunately, people with the condition can still be eligible for Social Security benefits, though the criteria are a little more complicated.

When Is Endometriosis Considered a Disability?

The Social Security Administration understands that not every disabling health condition can be listed in one neat guide. In addition to its list of recognized conditions, the SSA has guidelines for determining if a person with a disability is eligible for benefits. The guidelines include the following criteria:

• You are likely ineligible for benefits if you earn $1,260 or more a month. If you earn less than that amount, you may still be eligible, but the amount you receive may be reduced.
• You must be incapable of performing basic tasks required for most jobs, including standing, walking, lifting, sitting, and remembering. You must not have been able to perform these tasks for at least 12 months.
• You must be unable to do any work you did previously.
• You must be unable to do any other form of sustainable work, sometimes called “substantial gainful activity.” The Social Security Administration will consider your diagnosis, age, medical history, education, and work history, as well as any other skills you have that might be applied to work.

If all of the above apply to you, you may be eligible to make a disability claim for endometriosis. One MyEndometriosisTeam member told others, “It depends how severe your symptoms are. If you cannot stay at work or cannot work because of the pain or other symptoms, you can be eligible for disability benefits.”

Several MyEndometriosisTeam members reported qualifying for disability insurance. “I, myself, am on disability, mainly [due to] this horrible disease,” one member wrote.

Another reassured other members that, “As long as you can get a doctor to verify your condition, you can get all the help you need.”

Disability Benefit Programs in the United States

The United States offers two different federal disability programs, Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). To qualify for either program, you must have a disability that stops you from working. This includes your current job as well as any other types of work.

SSDI provides benefits to people with a recent full-time work history. The funds are drawn from payroll taxes. If you are approved for SSDI, you can receive benefits six months after the date your disability began. You are eligible for Medicare 24 months after you start receiving SSDI.

SSI offers disability benefits to low-income individuals, regardless of work history. If you are approved, you can receive benefits in the next month. You may also be eligible for back payments of SSI if you became disabled before your SSI was approved.

In most states, SSI eligibility qualifies you for Medicaid. In Alaska, Idaho, Kansas, Nebraska, Nevada, Oregon, Utah, and the Northern Mariana Islands, you have to apply for Medicaid separately from SSI, but the criteria are the same for both. Eligibility criteria for SSI recipients varies across states.

Almost every state provides 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 ( also called “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.

Applying for SSDI and SSI

People with endometriosis will have to go through a lot of paperwork when applying for disability 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

• 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 Endometriosis

• The name and contact information for your gynecologist, pain management team, and other providers who can offer medical documentation or discuss your condition and any medical treatment you have had
• A complete list of medications, both past and present, that you have taken; any side effects from them; and any medical tests or surgeries you’ve undergone (such as a hysterectomy; a uterine scraping; or the removal of the ovaries, fallopian tubes, cervix, or adhesions)
• A description of how the symptoms or treatments for endometriosis impact your ability to perform daily activities like shopping, cooking, and cleaning. These symptoms are also called "functional limitations.”

“I didn't obscure the truth about how this [condition] affected me and how it affected me so badly,” wrote a MyEndometriosisTeam member. It is very important to disclose all the problems endometriosis has caused you, including gastrointestinal or urinary issues that impact your ability to work or complete daily activities.

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

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 these criteria, you can still apply at a local Social Security office or over the phone.

Appealing a Disability Application Rejection

It takes an average of three to five months to process an application for disability benefits. Approval can take even longer.

Only 21 percent of those who applied for disability benefits between 2009 and 2018 were approved on their first attempt. You can appeal the decision if your application is denied. “Don't get discouraged and just remember: When you're approved, you get back pay,” a MyEndometriosisTeam member recommended.

The first step is reconsideration, when your case will be evaluated by someone who did not take part in the first evaluation. About 2 percent of applications that weren’t approved the first time were approved during reconsideration from 2009 through 2018.

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 benefits, waiting for approval, or appealing a denial can all be stressful. MyEndometriosisTeam members have advice on how to cope with the evaluation process and tips on getting approved.

• “I recommend hiring a representative. Yes, they will charge a fee, but in the long run, it will get you through the process faster.”
• “Don't get too discouraged after you are denied; it's typical.”
• “There is a section in the package that you fill out yourself. If your doctor is against you getting [disability], I highly suggest going to your gyno and getting all of your medical history yourself.”
• “Most important is updated medical records.The diagnosis is not the most important; how the illness affects your everyday life is.”

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

MyEndometriosisTeam is the social network for people with endometriosis and their loved ones. On MyEndometriosisTeam, more than 111,000 members come together to ask questions, give advice, and share their stories with others who understand life with endometriosis.

Have you applied for Social Security disability benefits for endometriosis? Do you have any advice about the process? Comment below or start a conversation on MyEndometriosisTeam.