Social Security Disability & SSI for Interstitial Cystitis

Interstitial cystitis (IC), often called painful bladder syndrome (PBS), is chronic inflammation of the bladder wall. The pain and discomfort of IC are similar to other conditions, like a urinary tract infection (UTI) or kidney stones.

Treatments can make interstitial cystitis bearable for some, but there's no cure. And the pain and changes in urination caused by IC can sometimes be disabling.

Disabling Symptoms of Interstitial Cystitis

The symptoms of interstitial cystitis can vary from person to person. They can include any or all of the following:

• pain in the pelvis
• discomfort (pain, pressure, or burning) during urination
• pain during sex
• an increased urge to urinate, and
• more frequent urination.

Symptoms might come and go, and it's common for IC sufferers to have periods of remission with no symptoms at all. Specific triggers can cause the symptoms to flare up (become much worse), including menstruation, exercise, stress, sex, and sitting for a long time.

Interstitial cystitis can affect your ability to function long-term. Some of the lasting effects of IC include the following:

• a reduction in your bladder's ability to hold urine
• sleep disturbances due to the frequent need to urinate
• depression
• anxiety, and
• chronic pain.

Treatments for Interstitial Cystitis

Doctors use a variety of treatments for IC, generally to relieve symptoms, such as:

• prescription and over-the-counter painkillers
• antidepressants (to relieve pain and frequency of urination), and
• antihistamines (to reduce the frequency of urination).

The side effects of certain medications can include dizziness and headache. Your IC medication could also cause drowsiness and overall fatigue.

Do You Have Interstitial Cystitis?

To qualify for disability benefits from the Social Security Administration (SSA), the agency must first agree you have a "medically determinable impairment" (MDI). That means that, before you can receive either Social Security disability insurance (SSDI) or Supplemental Security Income (SSI) for interstitial cystitis, you must prove that you have IC.

Diagnosing interstitial cystitis is often complex because there's no single test to prove you have it. Instead, doctors diagnose IC by eliminating all other possible causes of the pain and other symptoms.

For an IC diagnosis, you must have some or all of the following symptoms with no other medical explanation for them:

• frequent urge to urinate or urination
• pain in your bladder and pelvis
• tenderness in the pelvic area on physical examination
• pinpoint bleeding on the bladder wall, or
• Hunner's ulcers on the bladder wall.

But your doctor's diagnosis of IC isn't enough to establish that you have a medically determinable impairment. For that, you'll need objective evidence.

Evidence Need to Prove You Have IC

Social Security requires that you have objective medical evidence to back up an IC diagnosis. (SSR 15-1P.) To rule out other possible causes of your symptoms, you'll need tests like:

• urinalysis
• urine cultures
• urine cytology
• cystoscopy
• biopsy of the bladder wall and urethra, or
• distention of the bladder under anesthesia.

In men with IC, doctors might also take cultures of prostate secretions to rule out a prostate condition.

But these tests aren't the only medical evidence Social Security considers "acceptable" to prove an MDI of IC. Any practices or tests that are medically accepted can be used to prove that your IC diagnosis meets the MDI requirements.

For instance, evidence that you have the "medical signs" of IC can help establish an MDI, including any of the following signs:

• fibrosis (bladder-wall stiffening)
• diffuse glomerulations on the bladder wall (pinpoint bleeding), or
• patches of broken skin on the bladder wall (Hunner's ulcers).

Social Security will use your medical history, test results, and your doctor's physical examination notes to decide if your IC qualifies as a medically determinable impairment. If it does, Social Security will next decide if your IC is severe enough to be disabling.

Is Interstitial Cystitis a Disability?

Interstitial cystitis doesn't have a specific disability listing in Social Security's listing of impairments (the "Blue Book"). But there are three ways Social Security could still find you disabled under a listing.

Meeting a Disability Listing for a Related Condition

IC can be present with—or lead to—other impairments that are listed in the Blue Book. It can also be made worse by other listed impairments. If you meet the listing for the other impairment, you'll qualify as disabled.

For example, lupus, which is covered under listing 14.02, is much more prevalent in those with interstitial cystitis (people with IC are 30 times more likely to have lupus than those without it). And depression, covered under listing 12.04, can be caused by IC or can make your IC symptoms worse.

Equaling a Similar Listing

You can qualify for disability benefits by showing that your IC is medically equivalent to a listed impairment. You can "equal" a listing if your condition is as severe and lasts as long as any listed impairment. Social Security will look at the listings most closely related to your IC symptoms when determining "medical equivalence" to another listing.

Having Multiple Impairments Equivalent to a Listing in Severity

If you have multiple impairments (one or more conditions in addition to IC) that, when combined, are as severe as one of the listings, you might qualify for disability benefits (even if your combined impairments don't "equal" one listing). Combined impairments can be as severe as a listing if your impairments are just as disabling.

Do Your IC Limitations Prevent You From Working?

If your IC causes severe limitations, but Social Security finds it doesn't meet or equal a listing, you can still receive disability benefits. You'll need to show that your interstitial cystitis prevents you from doing any type of work.

Social Security will use a residual functional capacity (RFC) assessment to determine what your abilities still are—the most you can be expected to do given your condition. Disability applicants with IC can have both physical and mental limitations that affect their abilities. Social Security will look at your ability to work on a "regular and continuous basis"—meaning work you can do for eight hours a day, five days a week.

Assessing Your Physical RFC

Your IC symptoms and treatment can cause physical limitations that affect what kind of work you can do, such as:

• being unable to sit for long periods without an increase in symptoms, which can make a job behind a desk very difficult
• having pain from IC that makes completing physical tasks such as lifting or carrying difficult
• experiencing side effects from medications, including fatigue and dizziness, which can affect your ability to work in many environments, and
• needing to use the restroom frequently, which rules out jobs that can't accommodate repeated and unscheduled breaks.

Social Security will give you an RFC rating based on the kind of work you can still do. With your IC symptoms, you might get a physical RFC for any of the following:

• sedentary work (mostly sitting, but able to stand and walk)
• light work (mostly standing or walking with some light lifting), and
• medium work (ability to lift up to 50 pounds occasionally and 25 pounds regularly).

How Mental Limitations Affect Your RFC

Social Security will also assess any mental limitations your IC causes, including your ability to:

• complete tasks
• get along with co-workers, and
• respond appropriately to supervision and work stresses.

Your IC might cause pelvic pain that affects your ability to focus and sustain attention on work tasks. Medication side effects like fatigue and headache can also make completing tasks and dealing with work stresses harder. And frequent urination can cause you to lose sleep and cause frequent interruptions throughout the day—both of which can make concentrating and completing tasks more difficult.

Social Security must consider all your physical and mental impairments in deciding whether or not you're disabled. So, be sure to include information about any mental limitations you have, whether they're caused by your IC or not.

How Social Security Decides If You Can Still Work

Social Security will use your RFC to determine what you can still do, given your physical and mental limitations. The SSA will first compare your RFC restrictions to the tasks required by your past jobs to see if you can still do that work.

If your RFC indicates that you can't do your past work because of your IC, Social Security will then check to see if there are any jobs in the national economy that you can still do (or learn to do) based on your age, limitations, and job skills.

If Social Security finds that there's any kind of work you can still be expected to do—even if you've never done that kind of work, and even if there are no jobs in that field where you live—your disability application will be denied. But Social Security doesn't expect older workers to adapt to new work as easily as younger workers, so it's often easier to get benefits based on RFC if you're over 50.

Learn more about how Social Security decides what jobs you can do.

How to Apply for Social Security Disability for IC

The best way to apply for Social Security disability benefits for IC will depend on the type of disability benefits you're seeking and your limitations and preferences. The fastest and often most convenient way to apply for disability is to complete an online application. You can access the online application anytime (day or night) from anywhere.

If you're filing a claim for SSDI (or both SSDI and SSI), you can do the entire application online. But if you're applying for SSI disability benefits alone, you can only get started online. Once you complete the online portion of the SSI application, Social Security will arrange for a representative to work with you to finish the process.

If you prefer, you can apply for SSDI or SSI by phone or in person. Make an appointment to apply by phone by calling the SSA national office at 800-772-1213 between 8 a.m. and 7 p.m. Monday through Friday. Or contact your local Social Security office for an appointment to apply in person.

Learn more about the disability application process, including the documents and information Social Security will request.

_{Updated March 13, 2024}