Friday, November 22, 2013


Many of us struggle for so long with our IC, working so hard to keep working. But for some of us, it just becomes too hard and we are faced with the very difficult decision to file for Disability. I am on Disability due to my IC and associated conditions and here's what I know about going through the process.

If you are looking for support because you want to remain working but need a letter from your doctor to help you request a "Reasonable Accommodation" at work, that falls under the Americans with Disabilities Act and the burden of proof is NOT the same as with proving Disability for SSDI. See this link from the ICA website on Talking with Your Employer About IC. As you will read on this page: Typical accommodations specific to interstitial cystitis are detailed on the JAN site. You may want to print the page about accommodations for bladder impairments and share this resource with your employer.

I began my process by going on Short Term Disability through my employer.  Then when I wasn’t able to return to work, my company also offered Long Term Disability which I applied for as well. It was a challenging process and they also force you to apply for Social Security Disability because if you get approved for SSDI, the private carrier can reduce what they pay you by what you are getting from SSDI. KNOW what benefits you have at work before you do anything. I have spoken to many patients who just quit their jobs and discovered too late they had these benefits. If you do have these benefits, this is where you want to start.

One thing to know is that SSI (Supplemental Security Income) is NOT the same as SSDI and if you have ANY money, you won’t get SSI. Often when calling a disability attorney’s office they ask how much you make and assume you want SSI; this happened to me 4 times! It is also part of the process of applying for SSDI; Social Security has streamlined the process as many who apply for SSDI also do qualify for SSI so they just made it part of the process. I had to answer all the questions about SSI but knew I would be denied for that part and my consultant told me to about it and not to confuse it with being denied for SSDI. I had money in the bank from the sale of my house so that automatically disqualified me for SSI. But one has nothing to do with the other and you can still proceed to file for SSDI; your financial resources have ZERO impact on whether you will qualify for SSDI or not! 

You DO have to have worked for a long enough period of time to have earned enough of what are called “Work Credits”. If you do not have enough Work Credits, then no, you won’t qualify for SSDI.

First, the Social Security Administration (SSA) has what is called a "Listing of Impairments" which lists a long list of diseases. If the disease is in the Listing of Impairments, then it is very likely a person would be approved for Social Security Disability (SSDI). IC is NOT in the Listing of Impairments. HOWEVER, due to the dedicated work of the ICA, back in 2002, the Social Security Administration issued what is called a "Policy Interpretation Ruling on IC". The 2002 Social Security Policy Interpretation Ruling on IC recognizes IC as a condition that CAN be a basis for a disability finding, and it provides guidelines for the agency’s evaluation of IC claims.

Here is a link to the Policy Interpretation Ruling on IC for you.  Print this out. It is vital to applying to SSDI; not everyone knows about this and it can be very helpful when filing a claim.

Yes, as many will report, it can be very challenging to get approval for Social Security disability, not just for IC patients, but don't let that stop you. It is your job to prove you are disabled. This is very frustrating for so many IC patients, so I understand what everyone is dealing with. I was denied on my first claim and we filed an appeal and I was lucky enough to be approved after one appeal. I had my entire medical file since being diagnosed 12 years ago; it was 800 pages and we used about 500 pages of my medical file on my Appeal. If you are just starting out and need to file your initial SSDI claim, know that you can do it online and do NOT have to go to the local Social Security Administrative (SSA) offices and stand in line. It's on the web and you can fill out the paperwork right online.

You DO need to be able to demonstrate to Social Security HOW your illness(es) prevent you from doing ANY work at all. Of course, if you have excellent medical documentation with multiple problems that impact you, then that can help make your case, though it's no guarantee. Your doctor(s) support can bey very important in going through this process. My doctor wrote an amazing letter of support as did my psychologist. These are key, so having a letter or letters of support from your doctor(s) should be something you discuss with your doctors as you prepare for the process. So, ask your doctor(s) about helping you with this. I strongly recommend you purchase the ICA's Personalized Disability Packet, which includes a general letter explaining what IC is and why someone should be considered disabled because of IC.

If your doctor will write a letter that can be very helpful. One of the items in the Personalized Disability Packet includes a sample letter in the workbook and it is very specific as to how it should be worded. In addition, the ICA's Introductory Disability Packet can help you if you are just getting started in the process, so that is another item worth purchasing. If you are an ICA Member you can purchase all items at 50% discount. This is especially important if you need to Appeal a denial or are going to court for a hearing. The Personalized Disability Packet can be very helpful for Appeals!

It is very important for you to include any and all overlapping conditions related to your IC; i.e. anxiety/depression as a result of your medical conditions, sleep disorder, vulvodynia if you have it, fibromyalgia if you have it; your bladder issues etc. You get the point. You need to describe HOW the disabling impact all these conditions has brought you the point of not being able to work. Explain how your urinary urgency, frequency, high level of pain and discomfort for sitting, standing, physical exertion, physical and mental fatigue impact your ability for sustained function and performance for ANY job on a short or long term basis. You need to have medical evidence that the side effects of your medication(s) are significant and not only prevent you from doing the job you had, but also from doing ANY job and why if this is an issue for you.

When making your case you need to ask the question "What employer, with full knowledge of your medical condition(s) would hire you given your physical limitations? With the diagnosis you have of IC and any other complicating medical conditions, what would define a reasonable accommodation by a prospective employer? Explain that sitting, standing, concentration, motor skills are all affected by the extent of your medical condition(s) as well as side effects of your medication, that are supported (or need to be) by your medical records that you provide.

In addition, if you are appealing or waiting for a court hearing that is taking forever, you should contact your U.S. Congressional Representative's office (LOCAL office, NOT DC office) and ask to speak with someone in Constituent Services. Explain that your SSDI case seems to be taking a very long time, how long you've been waiting etc. Often they can help push it along in the process. They can't help you get approval, but they CAN help get it through the system faster.

Also, if you are in dire straits and need financial assistance or help with medical care, you can ask your Congressional Representative what services are available in your community to help you. Do not hesitate to call your Representative; this is what you elected them for and they can often guide you toward assistance programs in your area. Also, 

If you file for SSDI and get denied, then you definitely need an attorney or a non-attorney disability claims representative to help you with your appeal. You do not have to pay them anything until or unless they win your case; they get paid out of whatever settlement you receive from Social Security.

There are no guarantees. It is a challenging process and everyone has a different story of how hard it has been for them. Many are still fighting. While some like me, did have to Appeal once but was then approved. Yet others have been approved on the first go around. It is not a level playing field and you need to go in prepared for a fight. But if you are struggling and feel this is the right decision for you, then I urge you to never give up, go in prepared and educated and backed up with as much documentation and medical support you can muster!


  1. What did you do for health insurance while on short term?

    1. I was still covered by my employer's plan while on STD. When I transitioned to LTD and was administratively terminated, then I had to go on COBRA.