When people with hidradenitis suppurativa (HS) can no longer work, many in the United States seek Social Security disability benefits. Disability benefits help replace lost income when people with HS have to leave their jobs. “It's an awful condition to have to live with, and when required to work through it, it's tough and draining,” said one myHSteam member.

Many people with HS work for years before applying for disability benefits. One myHSteam member said, “I’m fighting for my disability now after working for 13 years. I just can’t do it anymore, the pain and embarrassment.”

Leaving a job or considering leaving because of disability can cause significant financial stress. “I've lost my job and can’t find employment that will work around my affliction,” another myHSteam member wrote.

Applying for a disability claim can feel intimidating. Understanding the process ahead of time can help you feel more in control. This article summarizes the types of disability benefits available in the United States and what to expect if you choose to apply.

Disability Benefit Programs in the United States

There are two different federal disability programs in the United States, Social Security Disability Income (SSDI) and Supplemental Security Income (SSI). In order to qualify, you must have a disability or medical condition that affects your ability to work.

SSDI gives disability benefits to those who have previously worked for a required amount of time in the recent past. SSDI benefits are funded through payroll taxes. If you are approved, you can receive benefits starting six months after you became disabled. If you have been disabled for at least a year, you can get back payments of disability benefits from that year. You are eligible for Medicare 24 months after you start getting SSDI.

SSI gives disability benefits to those who have not worked the required time period and have limited funds. If you are approved, you can receive benefits in the next month. If you became disabled before your SSI approval, you may also be eligible for back payments of SSI. Medicaid eligibility for SSI beneficiaries varies across states.

SSI has an asset cap. If an individual has more than $2,000 worth of assets (or a couple has more than $3,000 in assets), you stop being eligible. The Social Security Administration (SSA) has a list of what it considers assets.

Nearly every state offers a benefit supplement for SSI recipients. Only Arizona, Mississippi, North Dakota, and West Virginia do not. Eligibility for state supplements varies.

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

The Definition of Disability

To determine whether someone is considered disabled enough to be eligible for benefits, the Social Security Administration will weigh several factors. The following criteria will be evaluated when you file a Social Security disability claim:

• You are likely not eligible for disability benefits if you earn $1,260 or more each month. If you earn less than that amount you may still be eligible, but the amount of benefits you receive may be reduced.
• You must not be able to do basic tasks required for most jobs, including standing, walking, lifting, sitting, and memory tasks. You must not have been able to perform these tasks for at least 12 months.
• You must have a disability. The Social Security Administration provides a list of conditions that are considered so disabling that they prevent working. HS is one of the conditions included under the category of skin disorders. You can still be eligible even if your specific condition isn’t listed.
• For an SSDI application, you must be unable to do any work you did previously. If you’re applying for SSI, it’s not necessary to have a work history.
• You must be unable to do any other form of sustainable work. Your diagnosis, age, medical history, education, work history, and any other skills that might be applied to work will be considered.

Applying for Disability Benefits

You will need to provide a lot of information when applying for disability benefits. Organizing everything beforehand can make the application process smoother. The Social Security Administration provides a checklist of necessary information, summarized below.

Information About You and Your Family Members

• Your full legal name, date of birth, and Social Security number
• Full names and dates of birth of 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 HS

• The name and contact information for the doctors or dermatologists who can discuss your condition
• A complete list of present and past medications, and a list of any medical treatments or tests you have had for HS (such as skin biopsies, tests, or imaging scans)
• A description of how HS impacts your ability to complete tasks like shopping, cooking, cleaning, and other activities of daily life

Total Work Experience and 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 last 15 years, including any jobs from before you became disabled
• Whether you are receiving or intend to receive any form of workers’ compensation
• Any 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 that you currently have in your possession
• Proof of any workers’ compensation you have received

You can apply for SSDI online if you are not currently receiving benefits and if you haven’t been denied in the previous 60 days. You can apply for SSI online if you have never been married, you were born in the United States, and you are between 18 and 65 years old. Otherwise, you can apply over the phone or at a Social Security office.

Appealing a Claim Rejection

On average, it takes three to five months to process an application for disability benefits. Some members of myHSteam heard back sooner: “I applied May 1, 2018, and I was approved May 28, 2018, so it goes fast.”

People are rarely approved the first time they apply for disability benefits. Between 2008 and 2017, only 22 percent were approved on their first attempt. You can appeal the decision if your application is denied. The first step in an appeal is reconsideration, where your case will be evaluated by someone who did not review the first application. Between 2008 and 2017, about 2 percent of applications that weren’t approved the first time were approved during reconsideration.

The second step in an appeal involves a hearing by an administrative law judge. Administrative law judges are experts in disability laws, and they will review all the evidence for your case. You may have a lawyer represent you at this hearing. Many myHSteam members advise hiring a lawyer. “Get a disability attorney,” one member of myHSteam encouraged others.

If you are denied at this level, you can request that the Appeals Council look at your case and make a decision on it. About 9 percent of successful SSDI claims between 2008 and 2017 were approved during the hearing with the administrative law judge or the Appeals Council. If you are denied with the Appeals Council, the only remaining option is a federal court hearing.

It can be stressful to wait for disability benefits to be approved. Some myHSteam members suggest ways to cope with the wait and offer their tips for filing disability claims.

• “HS is classified as a disability. You have to make sure your doctor is documenting your symptoms the right way.”
• “HS is a disability. If it's not what they consider severe, be sure to mention your depression and any other health problems you have.”
• “Request a report from your doctor.”
• “I'm in a support group for HS on Facebook, and I've learned so much from them. A lot of the people on there get disability for it.”

While the process can be long, many myHSteam members are eventually successful. One myHSteam member shared, “I went on the [Social Security] website and filled out the forms. Then they start calling and sending more paperwork. In about six months, I started to receive SSDI, but it’s a lot of work.”

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

Talk With Others Who Understand

When you join myHSteam, you gain a community of more than 14,000 people who understand what it's like to live with hidradenitis suppurativa. Members offer support and advice on a range of topics, including applying for disability benefits.

Have you applied for disability benefits for your HS? Are you looking for advice on the process? Comment below or start a conversation on myHSteam.