Hidradenitis suppurativa (HS) is a chronic skin condition that can cause painful lumps to form under the skin. HS can lead to pain and discomfort, both physical and psychological. As one myHSteam member said, “It's an awful condition to have to live with, and when required to work through it, it’s tough and draining.” Given the impact that HS can have on your quality of life, many people wonder whether HS is considered a disability and what benefits you may be eligible for.

When managing HS at work becomes too difficult, many in the United States apply for Social Security disability benefits. Disability benefits can help replace lost income if HS forces you to leave your jobs. 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 is too much.”

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

Applying for a disability claim can feel overwhelming, but understanding the process ahead of time can help you feel more in control. This article explains how disability is defined when applying for benefits, the types of disability benefits available in the United States, and what to expect if you apply.

The Definition of Disability

In the U.S., there are two federal disability programs: Social Security Disability Income (SSDI) and Supplemental Security Income (SSI). To qualify, you must have a disability or medical condition that limits your ability to work.

The Social Security Administration evaluates several factors to determine whether someone is considered disabled. The following criteria will be evaluated when you file a Social Security disability claim:

• You are likely not eligible for SSDI if you earn $1,620 or more per month. For SSI, you’re likely not eligible if you earn $2,019 or more per month. If you earn less than these amounts, you may still qualify, but your benefits could be reduced.
• You must be unable to perform basic tasks required for most jobs, such as standing, walking, lifting, sitting, or memory tasks.
• You must have been unable 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 severe enough to prevent work. HS is included under skin conditions. 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.

Disability Benefit Programs in the United States

There are two main federal disability programs. 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 become disabled. If you have been disabled for at least a year, you may also receive back payments of disability benefits for that time. You become eligible for Medicare 24 months after you start getting SSDI benefits.

SSI gives disability benefits to those who have not worked the required time period and have limited funds. If you are approved, you can start receiving benefits the following month. If you became disabled before your SSI approval, you may also be eligible for back payments of SSI. Medicaid eligibility for SSI recipients varies by state.

SSI has limits on assets. To qualify for SSI, individuals cannot have more than $2,000 in assets (or $3,000 for couples). The Social Security Administration (SSA) has a list of what counts as assets.

Nearly every state offers additional benefits for SSI recipients. Only Arizona, Arkansas, Mississippi, North Dakota, Tennessee, and West Virginia do not provide state supplements. Eligibility for these supplements varies by state.

If you have very limited income and resources and also have a work history, you may qualify for both SSDI and SSI.

Applying for Disability Benefits

You will need to provide a lot of information when applying for disability approval for hidradenitis suppurativa. Organizing everything beforehand can make the application process smoother. Below is a summary of the information you’ll need, based on the Social Security Administration’s checklist.

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, along with dates of marriage, divorce, or death
• Full names and dates of birth of your children
• Bank account information

Medical Evidence About Your HS

• Names and contact information for 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 perform daily tasks like shopping, cooking, and cleaning

Work Experience and Employment History

• Earnings from the past year
• Current or past employers from the past two years
• A complete work history from the past 15 years, including any jobs you had before you became disabled
• Whether you are receiving or plan to receive any form of workers’ compensation
• Any military service

Documents To Provide

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

You can apply for SSDI online if you are not currently receiving benefits and haven’t been denied in the last 60 days.

For SSI, you can apply online if you’ve never been married, you were born in the United States, and are between 18 and 65 years old. If you don’t meet the criteria, 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. One member shared, “I applied May 1, 2018, and I was approved May 28, 2018, so it goes fast.”

However, most people are not approved the first time they apply for disability benefits. Between 2013 and 2022, only 19 to 21 percent of applicants were approved on their first attempt. If your application is denied, you can appeal the decision.

The first step in an appeal is reconsideration, where your case is reviewed by someone who did not evaluate your first application. Between 2013 and 2022, 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 7 percent of successful SSDI claims between 2013 and 2022 were approved during a hearing with an administrative law judge or the Appeals Council. If you are denied with the Appeals Council, the only remaining option is a federal court hearing.

Waiting for disability benefits to be approved can be stressful. 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 considered severe enough, 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 eventually succeed. One myHSteam member shared, “I went on the [Social Security] website and filled out the forms. Then they started calling and sending more paperwork. In about six months, I started to receive SSDI, but it’s a lot of work.”

Talk With Others Who Understand

On myHSteam, the social network for people with hidradenitis suppurativa and their loved ones, more than 45,000 members come together to ask questions, give advice, and share their stories with others who understand life with hidradenitis suppurativa.

Have you applied for disability benefits for your HS? Are you looking for advice on the process? Share your experience in the comments below, or start a conversation by posting on your Activities page.