freaking out about applying for disability

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there's Hope
Regular Member

Date Joined Nov 2006
Total Posts : 145
   Posted 1/21/2008 12:39 PM (GMT -7)   
I was wondering how many people here are on disability? I have to get a note from my GI and I am terrified right now that he is going to say "Just deal with it and get a job" or something like that. I have been out of work for a while because of my CD and am regularly getting Remicade infusions. I have state insurance to pay for my medications which average 60,000 dollars a year. I really can not afford to work and have them pull my insurance. I never wanted to get on state, I kept telling myself that I am getting better and getting back to work. I just can not afford my bills and necessities and need help. Dealing with the state just makes me nervous!!!! I don't know why. My PCP and therapist agree that I am not ready to jump back into work yet but my GI will make or break it and I am so nervous I can not even call them to find out!! I have been putting it off all day and worrying. It is just so important that this happens. I think I was almost as nervous applying for medical because I could not live without it. I have been relying on other people to help me out so I can pay my bills every month but I feel like a burden and need to be self sufficient again.
Thanks for listening, I just need a big hug and some good advice.
26 year old female. Dx with UC in June 2003. Flare up in June 2006 led to CD dx.
Current Meds: Remicade, Asacol, Bentyl, Phenergan, Reglan, Ultram, Celexa, Seaonale, Seroquel, Fish Oil, Lacto and a Multi Vitamin

"There's Hope. It doesn't cost a thing to smile; You don't have to pay to laugh; You better thank God for that!"

Regular Member

Date Joined Dec 2007
Total Posts : 43
   Posted 1/21/2008 1:00 PM (GMT -7)   
Back 1993 my husband tried to get on disability and they refused him even though he was really sick and need to have surgery. They told us he had to be sick for 1 year and then after that 1 year we went back to SSI and they said he was better and could work. Our government is so stupied about this disease and all the complications (sp). I think anyone who has to deal with this disease should be able to get disability. Right now he very sick and unable to work and I'm not working because I'm taking care of him. Well I hope you can talk to your doctor with strenght so you can take care of yourself and get better with this disease. I will say a little prayer for you and that your doctor will listen to you when you go in a ask for state help.

Forum Moderator

Date Joined Apr 2007
Total Posts : 32602
   Posted 1/21/2008 1:32 PM (GMT -7)   

I think your GI will agree with your other physicians and if your meds cost $60,000, who could pay that without help?  You may have to apply more than one time but make sure all the documentation is together and your Drs. are all in agreement.

Just pick up the phone and make the first call. Once that one is done it will get a little easier with each call and each form you have to fill out.  Gentle Hugs to you and keep posting.  We are here to support you.

Kitt, Co-Moderator: Anxiety ~ Panic  ~ Crohn's
*~* *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~

Veteran Member

Date Joined Feb 2003
Total Posts : 1195
   Posted 1/21/2008 2:05 PM (GMT -7)   


The only way you will know is to ask. My feeling is that he will write the letter. i did get disability and the MOST important aspect of the whole case was my GI being on board. So ask....  The fact that you haven't worked,.. are on remicade infusions etc  will help your case. 

Be prepared tho... once you apply it does take awhile.  I woudl be happy to answer any of the questions you may have and help along the way.

Prof  ( my email is in my profile)

Veteran Member

Date Joined May 2003
Total Posts : 2481
   Posted 1/21/2008 2:53 PM (GMT -7)   
When you talk to your doc, you tell him the truth, tell about your worst days with symptoms, and all other symptoms, eating complications, and fatigue and anything else that will interfere with performing a job on a regular basis permanently.

No employer wants someone to work for them if they have to go to the bathroom to poo and fart all the time, who's tired all the time and could screw something up for lack of concentration, who needs extra long breaks for resting, and takes a day or two off here and there or longer.

Don't sugarcoat your symptoms and illness when discussing disability. Be honest and real.

Best wishes.

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 1/21/2008 3:34 PM (GMT -7)   
I agree with the others have said on here! I am on some disablity, for other injuries, but Crohns stopped me in my tracks. It has been over two years since I applied I still am working on it.
Forum Moderator 
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...

Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 1/21/2008 3:42 PM (GMT -7)   
I always find this topic very irritating (not that the people here are irritating but the system is irritating. My clients all have intellectual disabilities and some of them have been turned down for ssdi even though they have never been toilet trained and need assistence changing their diapers. How are they supposed to find work. Then there is the fact that noone would volunteer to live on what our government pays for disability. No one would go through this stuff if they did not have to.

Veteran Member

Date Joined Jul 2005
Total Posts : 733
   Posted 1/21/2008 5:09 PM (GMT -7)   
I guess my story is one of luck...

I applied for disability in September, and I was approved by the middle of december. I remember having to fill out a huge packet of information about my daily life.. ("I get up, I go to the bathroom. I eat breakfast, I go to the bathroom, etc, etc.). But unlike most of the other people on here, I only had to apply once. And I have been re-evaluated once since then, and deemed still in need of the disability payments.

And I agree whole-heartedly with the others on here - you HAVE to have your doc behind you. I have no doubt that my GI was the one who tipped the scales, if any scale tipping were necessary. Your GI has to be your advocate. If he's not behind you - find another one, and apply again.

Best of luck to ya.

Glad Bag
Veteran Member

Date Joined Mar 2007
Total Posts : 699
   Posted 1/21/2008 6:22 PM (GMT -7)   
just balancing things out here. I was once fired from a long-term job, not because of Crohn's disease, but because I had screwed up (another story). However, at the time, I had known I ought to qualify for disability and applied.

But let's make the distinction here. There is a big difference between Short Term State disability and Long Term, Social Security disability.

First off, both benefits, if you quality, are based on what you have previously earned. If you haven't worked at some point, and payed money into a state program, you typically aren't eligible, regardless of your condition or situation.

However, on the Social security program, if you haven't worked enough to qualify for SSD, you may still gualify for SSI. A slightly less generous program, but both come with Medicare, which can help with medical costs quite a bit and stays effective even after you return to work for three years.

What I did after I was fired, was decide I would apply for state disability, and put myself back to school. So, I called my GI, who didn't even make me come in. He said to fill out my part fo the form, and fax the rest to him (or maybe i just filled out my part and then sent it to the state office, who then went ot my doc for the rest).

Most of our symptoms are subjective, so they can't ask your doc how many times you go a day, or what not. Just be honest, and make sure you don't minimize anything.

After state dis. ran out, 18 months later, I decided to apply for Social Security disability. I filled out all the forms, go the forms filled out by my doc, and called contstantly to check the status of my application. I then had to go get an "evaluation" by a doctor they hired to check me out. HE looked at me, and my list of symptoms, and never told me what he would tell them.

Then, I was approved sometime not long after. IT took less than 6 months from the date I applied, and you usually get back pay from when you applied with your first check.

why are you waiting? make the call. You should not feel guilty about something that you can't control! the physical aspect of this disease is bad enough, take control of your life and do the footwork and you will feel more empowered as a result.

If you have any questions about the process, i will be happy to help walk you through filling out things after you make that first call. Just email me....

i know some people have a harder time, and personally, anyone who peeks are my rear knows I am hurting, but i just want to say it is possible, and sometimes even a lot easier than you think to get approved.

Sorry if I came across a little grumpy, I just don't think anyone should suffer more than they need to....

"The things that make us feel so abnormal, are actually the things that make us all the same" - from PostSecret: Extraordinary Confessions from Ordinary Lives - by Frank Warren

there's Hope
Regular Member

Date Joined Nov 2006
Total Posts : 145
   Posted 1/21/2008 6:39 PM (GMT -7)   
Thank you all SO MUCH!!!!!!! I am calling first thing in the morning as it is too late now. I can not thank you all enough. I agree, who would WANT to get so little to live on a month instead of earning all you can? I guess I get nervous because I try to see the positive all the time but as you all said I need to stop sugar coating it. They know the remicade knocks me for a week and that in itself is a problem in getting a job. Let alone all the other lovely symptoms!
Prof and Nat I will be taking you up on that offer of help through this process, I can not tell you how much it means to talk to people who understand and have been there.
I am just going to be blunt with my GI, he is a nice guy and hopefully he will see what I am going through and help me out. I feel a lot more confident that I can do this now, I should have done it a year ago. I will let you all know what happens after I talk to my doc.
I am hopeful it will all work out. If not I can always fight harder and appeal. I just need to remember to stay focused and not get overwhelmed by all of this.
THANK YOU SO MUCH for all your replies, I can not even tell you how much it means to have this forum.
26 year old female. Dx with UC in June 2003. Flare up in June 2006 led to CD dx.
Current Meds: Remicade, Asacol, Bentyl, Phenergan, Reglan, Ultram, Celexa, Seaonale, Seroquel, Fish Oil, Lacto and a Multi Vitamin

"There's Hope. It doesn't cost a thing to smile; You don't have to pay to laugh; You better thank God for that!"

Regular Member

Date Joined Jun 2006
Total Posts : 267
   Posted 1/21/2008 6:55 PM (GMT -7)   
I just have to say that I work in social services and we have clients who live off of disability for, in my opinion, b.s reasons like drug addiction, alcoholism and other mental health problems. I don't mean to offend anyone but it infuriates me when I know I am paying taxes for drug addicts to receive disability every month. Maybe it makes me sooo angry because there are so many people out there like us that have very serious illnesses who get turned down for disability, or who work our butts off but still can't afford health insurance ( or it's crappy insurance ), or we make "just a hair" to much a month to quality for any kind of state assistance like Medicaid or food stamps.
Sorry, just had to rant.
Good luck to you on your disability claim!
Marci, 38 years young, Rockledge, FL
Dx with Crohn's disease March 2006
Currently on bi-weekly Humira, daily 6mg Entocort, daily 2-3x 5mg hydrocodone (for pain), and daily 75mg Effexor,
plus 3x per day heavy iron supplements for anemia,
calcium supplement, daily multi-vitamin,
Lasix as needed for ankle/feet swelling
Self-proclaimed "recluse"  do to CD  ;)

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