We all know that IBS can be disabling - and sometimes the pain, discomfort and practicalities of IBS mean that sufferers can find it
impossible to work. This means relying on social security or disability payments from the government, and this section of the website is designed to help IBS sufferers share their experiences of applying for these payments.
I have divided the experiences into two sections, one for the USA and one for the UK. The systems for both countries appear to be relatively similar in terms of assessing people - if you do not have an obvious or severely limiting disability such as paraplegia you will need to go through an assessment process, where your disability and its affect on your everyday life is evaluated.
social security usa
In the USA there are two main Social Security programs which IBS sufferers may be able to access. If you apply to one of these Social
Security programs you will need to provide medical information to back up your claim.
A survey by the International Foundation for Functional Gastrointestinal Disorders (IFFGD) in 2002 found that 5% of the 350 Americans they polled reported that they were on disability benefits due to their IBS. The survey was called IBS in the Real World.
Social Security Disability Insurance (SSDI)
SSDI pays benefits to disabled people if you have worked for a certain period of time and paid enough Social Security contributions through your salary.
Supplemental Security Income (SSI)
The SSI program pays benefits based on financial hardship. It is funded by general taxes rather than Social Security taxes, and so doesn't depend on the amount of Social Security contributions you have made. However, while SSI is not subject to federal taxes, it is subject to income taxes so keep that in mind when you file taxes for the year.
SSI is generally aimed at people who are blind, elderly or disabled and who have little or no income. The money is intended for basic needs such as food and shelter.
social security experiences
The tale of...Robin
Well, I'm on the second stage, reconsideration. Social security has lost my file twice and has done everything imaginable to make my process
miserable, but I keep hanging in there because of the stories that I read on this site.
My reason for filing for SSI and SSDI is first for the IBS and GERD, but I'm also in treatment for pinched nerves and muscle spasms. I've been suffering with IBS for 10+ years. Family members recall even longer, but I was in denial for so long like many others. My episodes were always a 'one-time incident', it wasn't going to happen again. Like the rest of you I knew where every restroom was when I traveled.
It got so bad that I would only work maybe three days. I would show up for six, sometimes seven days but I wouldn't last an hour. I would pack extra clothing but eventually my IBS would win in the end.
At present, I am waiting for my hearing with Social Security of which I will learn the date fairly soon, from what my lawyer said. This means that I've already been turned down on the appeals, which is common practice for anyone who's filed Social Security here in the United States.
I was honorably discharged because of my disability, IBS and GERD mainly, from the United States Marine Corps in 2002. I receive compensation, a form of disability, from the Veteran's Administration as a disabled veteran. I only get 10%, but that too is in the process of appeals, my representative being a Disabled American Veteran National Service Officer (a non-profit organization that represents veterans).
So I have two claims at present in process, one from the Veteran's Administration and one with Social Security. I don't know how they'll go,
but I can give an update in a few months.
Once I was discharged from the military because of my condition, I tried working, but couldn't keep my job. I get sick too often, anywhere from four days to two weeks per month from my IBS and/or GERD. I also have really bad PMS, or endometriosis, which affects my stomach too. The last job I had was over a year and half ago, which I could not keep longer than the two months I worked there. My boss pressured me to quit after getting sick too often.
That's about it. I can only give you an update further down the road as to the success or failure of my case. I hope my input helps.
I am a retired Navy veteran who has gone through the Veterans Admin and the Social Security Admin for disability on my IBS. First of all, during my Navy career my gallbladder was removed and ever since then I have had to tolerate different diagnoses on what my bowels were doing.
I only received a 0% rating from the VA for my surgical scar and nothing else. No rating for gallbladder removal, cholecystectomy, or IBS. I have been denied statements from my civilian doctors and VA doctors who do not want to be placed into a position of pinning down my problem.
I am tired of being embarrassed because of the smell coming from the bathroom when I leave the bathroom of the department store, workplace and at home. My last compensation case through the VA tells me I am denied any rating because according to their criteria I have no residual effects from my gallbladder surgery or IBS. Just lately the VA sent me a letter stating they wish for me to send all relevant evidence to them but the info must show three things:
I had a disease that began in or was made worse during military service or an event in service that caused a disease
I have current physical or mental disability shown by medical evidence
There is a relationship between my disability and a disease in military service. Medical records or medical opinions are required to establish this relationship. However, under certain circumstances, VA may conclude that certain current disabilities were caused by service, even if there is no specific evidence proving this in my particular claim.
So now I am getting pissed after doing this run around of putting in appeals and revising my past claims in the hopes the VA will give me a
disability rating or compensation. As for the SSA, they have denied my claim for the third time and again I have placed different versions of my claim in the event they will allow me a rating.
At this point I have been considering going through my state senator or representative instead of going through the Board of Veterans Appeals in Washington DC. If you can help me I would truly appreciate your help especially from other veterans who have been fighting their claims for almost six years. Thank you for listening to my story.
I got my IBS-D about the same time as I became diabetic and my depression went from average to very severe. I have applied for both SSI (Supplemental Security Income) and SSD (Social Security Disability). They took six months, and then approved me for SSI, but rejected me for my SSD. I filed for a 'Reconsideration' and as was my prediction, they turned me down again. I then filed for an ALJ (Administrative Law Judge) hearing to take it to a judge and won.
I know many people who hired lawyers to do for them what I did for myself, and they paid about $5,000. I'd like to see some people who had that happen to them attempt a 'Class Action' against the Social Security Office to recover all their money and teach the jerks a lesson. I'm not a lawyer though and you run into State and Federal Immunity unless you really know your way around that system.
If you get all the little pamphlets on SSI and SSD, you will see that by their own policy it is the same formula to calculate if you qualify for either. SSI is for people who didn't work enough to pay enough into the system, that's the only real difference.
Most people look at SSD as welfare, but you pay into that system whenever you work, so it is not in anyway welfare. If you can get the SSI and you can show you worked enough you can get the SSD just as I did. It's up to you on if you think you can handle it yourself. I kind of had fun with it, as odd as that sounds.
incapacity benefit uk
The UK benefit which is most applicable to IBS sufferers is Incapacity Benefit. This is available to people who are not currently in work. This page provides details of Incapacity Benefit and also Statutory Sick Pay (for employed people) and Disability Living Allowance.
Statutory sick pay
If you are employed then you can receive Sick Pay for up to 28 weeks. After that you will need to claim Incapacity Benefit.
Disability living allowance
The Disability Living Allowance is for people who have care needs, such as help using the toilet or with cooking and cleaning, or mobility problems. It is unlikely to be applicable to IBS sufferers unless you also suffer from another disability such as arthritis or fibromyalgia.
Incapacity benefit is paid to people who are unable to work and who are not receiving Sick Pay. There are different rates of Incapacity Benefit, which depend on how long you have been unable to work.
To qualify for this benefit you must be 16 or over and under state pension age, and you will usually need to have paid sufficient national
insurance contributions. Initially you will need to provide a medical certificate to prove that you cannot work, and this can be used for the
first 196 days of your sickness. When 196 days have passed you will be asked to pass a 'Personal Capability Assessment' (previously called the 'all work test'). This assessment examines your ability to perform everyday tasks such as cooking and walking. You may need to be examined by a doctor.
If your application for benefit is refused then you can lodge an appeal. Remember that if you are unemployed but looking for work, or working less than 16 hours a week, you may be able to apply for Income Support rather than a disability payment.
If you are thinking of applying for one of these benefits, there are more details on the Jobcenter Plus website, or you can get good advice from a local Citizens' Advice Bureau.
incapacity benefit experiences
The tale of...Blondie13
Well, where to begin describing the debacle which has been applying for Incapacity Benefit...I'll summarize the key points, because if I wrote in detail we'd be here for weeks!
1) Discovered Incapacity Benefit existed by seeing this very web page - previously had tried to claim income support and had failed, but they didn't bother telling me about Incapacity Benefit (IB).
2) Went to the relevant Jobcenter Plus website, read all about the benefit, realized I qualified - so downloaded an application form (very long) and filled it in (very boring, some bizarre questions with no direct answer possible) and sent it in, along with my doctor's note/medical certificate.
3) Received two envelopes from the Department of Work and Pensions/Jobcenter Plus on the same day. One had my application form in it
(returned because I had 'not included a medical certificate', the other had my medical certificate, telling me I did 'not have a current claim for IB'.
4) Called them up to ask 'What the hell?'. Took three departments before anyone could figure out what had happened, namely because they had no record for me, and seemed to blame me for that...Turns out that you can't apply by post - you have to call them to start the process. Any ideas as to why they tell you otherwise on their website? Nope...
5) So now started the 'correct' process, having lost six weeks (how long it took them to reply to my original application). Correct process
apparently consists of a phone call to your local Jobcenter Plus, which lasts around 20 minutes (though it took longer as the guy I spoke to understood minimal English), then one of their colleagues calls you back the next day to finish the telephone application/information-gathering process. Note: Be prepared - have details of all your banking and savings, work dates, etc to hand - you can get a good idea of the information you should have with you for the phone calls if you download the useless application form from their website.
6) Once these two telephone conversations have been completed, the information gathered in them will be sent to you ('personal statement'),
which you must sign and send back. Two points here - first it means you send back something nearly entirely identical to the form that you can't use, containing the same information, second that it is advisable to use recorded post - don't ask...
7) Upon receiving your personal statement your 'claim process' is started - don't hold your breath. This process took three months, lots of phone calls to chase it, ridiculous arguments with people determined not to help and an original rejection decision - based on my 'late claim' (yep, I lost it at that point).
So, in conclusion, I eventually received Incapacity Benefit, and they backdated it for three months (I was actually entitled to it being backdated by 12, as I had medical certificates covering that period, but was advised trying to claim 'this much' would damage my claim, and it would take longer). I now receive it fortnightly and it comes to around £70 a week.
After 28 weeks they send you a letter saying you're nearly ready to claim Higher Rate Short Term Benefit - can you just please fill in the attached forms, get a more detailed note from your doctor, and send them back. This is part of your Personal Capability Test, and depending on the information in it you might be asked to attend a test with a doctor. Looking forward to that one...Still waiting to hear when/if I have to do that.
After 52 weeks you are entitled to Long Term Rate, which is quite a bit more than Short Term initial rate and Higher Rate. Hopefully I will be in a position to work by then and won't need it!! I'll update later.
Hopefully mine was just a bad case, but from the contact I've had with people there I wouldn't hold out much hope. Good luck!
The tale of...Hayley
I live in the UK and I have a degree. I am considering applying for Incapacity Benefit after previously receiving Jobseekers' Allowance (so much for university!). I have 'tolerated' my IBS for a number of years, but I am now in my mid-twenties and it has become considerably worse, as not only an embarrassing but debilitating social condition.
The last bout was so bad I was practically bed-ridden for four weeks (apart from needing to get up to use the loo every five minutes). I hate
having to go to the doctor and even talk about it to him as I get very embarrassed, my doctor isn't very empathetic which doesn't help! I also
suffer from a knee injury and severe bouts of depression, but with both I fight very hard not to take anti-depressants or painkillers.
The knee injury plus depression, which is classed as a 'non-serious' mental illness, may bolster the application and save me from being turned down the first time, but at the same time I don't want to have to exaggerate any of my ailments just to receive any entitlements, but it seems that's what you have to do, I don't know if anyone would agree with me about that? I was able and available/seeking work before this, and did not want to have to resort to even applying for incapacity benefit.
The tale of...GG
My IBS is constipation-based (with the occasional bout of diarrhea just so that I can suffer all the symptoms) and makes me constantly tired and bloated. I have just dropped out of doing a masters degree I worked for years to be able to do because I simply could not cope.
I've been unemployed for a few weeks and am thinking of trying to claim some benefit. I can't eat without pain, get to sleep if I feel like I'm going to be sick or have stomach cramps, and I can't go to the toilet. So basically that's the three basic functions of any human being (eating, sleeping, using the toilet) that are difficult, some days even impossible, and painful for me. However I just have a feeling that actually claiming the benefit is going to be hard...
But it's just occurred to me that even if I did get it, what would be the point? Without work, a social interaction or just being able to enjoy
something in life without pain there's no chance of living a decent lifestyle. I'm not talking about 'having it large' every Friday night, I just mean that I've had to become a social recluse who whines on the internet about a problem that is socially unacceptable to most people to talk about...Without any hope of recovery I can't even begin to try and fight this thing I'd rather it actually was fatal.
The tale of...Paul
The way you are awarded incapacity benefit is on a points system, and if you score 15 points you get it. One of the points if for if you lose control of your bowels at least once a week. The doctor asked me how many times a week I soil myself! I could not believe him.
The tale of...Diana
I have applied for disability four or five times and have been turned down on each occasion. I have lost four stones due to IBS and have ended up in hospital three times. I haven't been able to work for four years and cannot continue my university career. These days I only go out to attend medical appointments. I've given up hope.
The tale of...Nikki
I have been receiving disability payments for over five years now but have suffered from IBS for about seven years. I'm a married mum of two and I live in the UK.
The whole process of claiming disability benefits was very easy to do. It took about six months to be actually allowed the benefit because I was refused it at first. They don't really take any notice of what you put into the application form. They ask you to go for a little chat with them and tell them how IBS affects you, and as we all know it affects everyone in different ways.
Myself, I rarely leave the house, traveling is impossible, I constantly feel sick and tired etc. I hope this helps anyone out there.
The tale of...Mandie
I have been ill for years with IBS and it got so bad I couldn't work. I applied for benefits with the help of the Citizens Advice Bureau and at first was turned down. I appealed and was awarded a low rate for two years, so it is worth a try. I think disability living allowance should be given as IBS is a chronic condition.
The tale of...Angela
My 10 year-old daughter has had IBS for five years. We tried to claim disability allowance and were turned down. We appealed with the help of a benefits officer but we were still turned down, although they would not give the reason why. Because it is not common they don't believe that it is that bad. Some days my daughter doesn't get out of bed with it or get much sleep at night.
The tale of...Bry
I have been off work for over three years because of IBS. I have been getting Incapacity Benefit for over two years, but the government department which deals with Incapacity Benefits does not believe that IBS is enough to prevent you going to work. So the way I got to receive Incapacity Benefit was to express the stress that it causes.