Social Security Disability & SSI for Interstitial Cystitis

Find out if you can get Social Security Disability benefits based on interstitial cystitis.

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Interstitial cystitis (IC), often called painful bladder syndrome, is chronic inflammation of the wall of the bladder. The pain and changes in urination caused by IC can sometimes be disabling.

Disabling Symptoms of Interstitial Cystitis

Specific symptoms that affect those with IC include pain in the pelvis, pain during sex, discomfort during urination, an increased urge to urinate, and more frequent urination. Symptoms can come and go; IC commonly goes into periods of remission where there are no symptoms at all. Flare ups, where symptoms become much worse, can be caused by certain triggers such as menstruation, exercise, stress, sex, and sitting for an extended amount of time.

The long-term effects of interstitial cystitis can include a reduction in your bladder's ability to hold urine, sleep disturbances due to the frequent need to urinate, depression, anxiety, chronic pain, and negative effects on personal relationships.

Treatment for IC can include changes to your diet, pain killers, antidepressants to relieve pain and frequency of urination, or antihistamines to reduce the frequency of urination. The side effects of certain medications can include drowsiness, dizziness, headache, and overall fatigue. 

Do You Have IC?

In order to receive Social Security Disability (SSD) benefits for IC, you must first prove that you have IC. Diagnosis of this condition is often difficult because it is diagnosed by eliminating all other possible causes of the pain. In order to prove you have IC, you must show that you have some or all of the following symptoms with no other medical explanation for the symptoms:

  • Frequent urge to urinate or urination
  • Pain in the bladder and pelvis
  • Tenderness in the pelvic area on physical examination
  • Pinpoint bleeding on the bladder wall caused by reoccurring irritation after a cystoscopy, which is a procedure where the fill the bladder with water then drain it, and/or
  • Hunner’s ulcers on the bladder wall after a cystoscopy.

To prove the above symptoms, various tests can be used, including urinalysis, urine culture, urine cytology, cystoscopy, and biopsy of the bladder wall. These tests are not the only medical evidence that will be accepted to prove IC; any practices or tests that are medically accepted may be used to prove that you suffer from IC. Your medical history, physical examination notes, and test results will all be assessed to determine if you have IC.

Do You Meet or Equal a Disability Listing?

Interstitial cystitis does not have a specific disability listing in Social Security's listing of impairments (the "blue book"). However, there are three ways in which you can be found to be disabled under a listing for IC.

Meet a Disability Listing for a Related Condition

IC can be present with other impairments, be worsened by other impairments, or lead to other impairments. For example, lupus, which is covered under Listing 14.02, is a disease that is much more prevalent in those with IC; those with IC are 30 times more likely to have lupus than those without it. Depression, which is covered under Listing 12.04, can be caused by IC or can make symptoms of IC worse. 

Equal a Similar Listing

You (or your lawyer) could argue that your IC is equivalent in severity to a listed impairment may have enough to receive disability benefits if your impairments are medically equivalent to a listing. Your medical condition can equal a listing if it is as severe as and lasts the same amount of time as any listed impairment. Social Security will look at the listings that are most closely related to your impairments when determining "medical equivalence" to another listing.

Have Multiple Impairments Equivalent to a Listing in Severity

If you have multiple impairments in addition to IC that, when combined, are as severe as one of the listings, you may be able to receive disability benefits (even if your combined impairments don't "equal" a listing). Combined impairments can be as severe as a listing but not equal to the listing if your impairments are not similar to any other disability listing but are just as disabling.

Do Your Limitations Prevent You From Performing a Job?

If your IC causes severe limitations, but Social Security finds it doesn't meet or equal a listing and your medical condition isn't equivalent in severity to a listing, you can still receive disability benefits if you can show that interstitial cystitis prevents you from doing any type of work.

Social Security will use a Residual Functional Capacity (RFC) to determine what your maximum abilities are. Those with IC may have both physical and mental limitations that affect their abilities. Social Security will look at your ability to do work on a “regular and continuous basis,” which means what work you can do eight hours a day, five days a week. 

Social Security will assess your physical limitations, such as being unable to sit for long periods of time without an increase in symptoms, which can make a job behind a desk very difficult. Pain from IC can also make completing physical tasks such as lifting or carrying difficult.  Side effects from medications, including fatigue and dizziness, may also impact your ability to perform physically at work.

Mental limitations that Social Security will assess include your ability to complete tasks, to get along with co-workers, and to respond properly to supervision and work stresses. For those with IC, frequent urination can lead to decreased ability to sleep and increased interruptions through out the day, both of which can make the ability to concentrate on and complete tasks more difficult. Medication side effects of fatigue and headache can also make completing tasks and deal with work stresses harder. Depression and anxiety related to IC may decrease your ability to complete tasks or interact properly in the workplace. 

Social Security will then consider what jobs, if any, someone your age with your RFC, limitations, job skills, and education could do. For more information, see our section on how Social Security decides what jobs you can do.

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