This only pertains to US citizens: But the
Crohn's & Colitis Foundation of America has drafted an IBD bill for Congress (both houses) that would not only allocate more fund for research, it would also recognize IBD as a chronic, often debilitating illness, and it would be added as a disability to the big list of recognized disabilities.
I also applied for SSI (that's Supplemental Security Income) because I was told by a social worker that it would be easier to get than Social Security disability insurance. All I remember about the distinction between the two (I applied seven years ago) is that SSI is the one where you can work up to 20 hours a week, but are still not making enough money to cover your bills/expenses, and SS disability insurance is for people who can't work at all due to their disability.
I was rejected, as well. I never bothered to re-apply because I didn't want to pursue it at that time. I was working retail, and living at home with my parents, so money wasn't that big of a problem for me. I figured that, since I really didn't NEED it, that I should let people who actually do need it to have a chance for it. Like many of you, who sound like you need the assistance far more than I do.
I'm pretty lucky, in that sense. Once I started working at Starbucks, I was able to get my own health insurance (the only reason I remained at home was because I had to be my parent's dependent in order to stay on their health insurance), and moved in with my boyfriend (now husband). Although Starbucks was insanely grueling, and I did eventually leave my job because I had gotten a very bad flare that wouldn't go away because I wouldn't stop working long enough to allow it to heal.
After that, my father-in-law hired me on as the secretary/bookkeeper/office manager for his budding pool building business. He actually started an employer-sponsored health care plan (medical only) for me, just so I could leave Starbucks and not have to worry about health insurance. I use COBRA, through Starbucks, for dental and vision (I never actually quit--it's a long story but ended up being "separated" from the company, which is a bit difficult to explain and this post is already long).
Sorry about the off-topic rambling. Back to the issue at hand--if you are a US citizen, you can write letters to your representatives in Congress asking them to please pass the IBD bill. Since, once is passes, IBD will be a recognized disability and hopefully all of those hoops that you all talked about jumping through just to get approved would be greatly diminished. I've already written my reps and am trying to set up appointments at a field office so that I can talk with them face-to-face about the realities of IBD.
I wish all of you tons of good luck in receiving the disability income that you need.
Katie.
but I was in remission, felt great, and didn't have a care in the world. In fact it was kinda fun scraping up change to eat lunch
