I faced this dilemma almost four years ago. I had been battling my IC at that point for 7 years and thanks to having an amazing boss, I was managing to hold it together and continue working. If you really want to continue working, it is imperative you do everything you can to protect your job. Most IC patients try to keep working without telling their employer about their medical condition, but find themselves having to use all their sick time and vacation time to take time off from work and if your employer doesn't understand why, it is going to make them think you're just slacking off. If you want to keep working, you MUST communicate with your employer about your medical condition and formally request a "Reasonable Accommodation". For more on this topic, check out the ICA's website page on "Talking with Your Employer" and I'll include a link here.
But, if you reach the difficult decision that you cannot continue to work and need to apply for Disability, I wanted to share some of what I learned going through this challenging process.
It is not easy to get approval for Social Security disability, not just for IC patients. First, know what benefits your employer offers! Many people have lost out on benefits their company offered because they were not aware they offered Short Term and/or Long Term Disability. So find out what your benefits are before you do anything !
I began my process by going on Short Term Disability through my employer. At first they would only approve me in small increments like 3 weeks at a time. Finally my doctor called them and I was approved for the maximum for STD, which for me was 26 weeks. My doctor really helped in this situation. 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 if you have this benefit, you need to know that the private LTD insurance carrier will 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. In other words, say you get approved for LTD from work and that check is $2000 per month. Then let’s say you get approval for SSDI and they’re paying you $1500 per month, the private LTD carrier will still pay you, but now they only have to pay you $500 per month – the difference between the SSDI payment and what the private LTD payment had been. But it's more money if you have those benefits than you would get with just SSDI alone, so before you go and resign your job, just make sure you know what your benefits are!
Filing your initial claim for SSDI is a daunting process and if you can get an attorney to help you file your initial claim, then I recommend it. Unfortunately, the vast majority of Disability Attorneys won't help you until you file your claim, get denied (they all assume that will happen and based on statistics it does most times), then they tell you to call them back and they will help with your appeal.
It is your job AND your attorney's job to prove you are disabled. As I said, I am on Disability due to my IC. This is very frustrating for so many IC patients. I was denied once 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 11+ years ago; it was 800 pages and we used about 500 pages of my medical file on my Appeal.
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.
Let me know if you have any questions.