Is "my" IBS a disability ?: Hello everyone. I... - IBS Network

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Is "my" IBS a disability ?

RobWilde profile image
14 Replies

Hello everyone. I have an extremely debilitating dysenteric PI IBS. I have been all across the country for tests and consultations with professors and professionals and my diagnosis is IBS.

My struggles are daily and i can eat maybe 10 or 11 foods, i can barely socialise or leave the house for long periods of time due to very bad nausia and a feeling of weekness ( i do believe i have chronic fatigue as well due to the IBS).

Im an electrician by trade but i cant do my job because its to demanding on my body, instead i run a little business from home and i frequently go weeks without earning any money. Im 32 years old and when i got ill 3 years ago i had to sell my home and move in with my mother who is pretty much supporting me.

I know IBS has a very broad spectrum of sufferers and some people can work and go on holiday and live normal lives, and others...cant.

Dose anyone out there get any financial disability or incapacity help / benefits ?

What is the governments view on IBS as a disability ?

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RobWilde profile image
RobWilde
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14 Replies
ldwilliams profile image
ldwilliams

you can certainly apply for PIP

whether or not you get it is down to an assessor though

it is All about How your condition affects you they say

i feel that it may well be difficult, but not impossible, but get as much evidence And help as you can, Especially with the form completion, as That is what they Mostly go on

ClareLou profile image
ClareLou

Definition of disability under the Equality Act 2010. You're disabled under the Equality Act 2010 if you have a physical or mental impairment that has a 'substantial' and 'long-term' negative effect on your ability to do normal daily activities. Its all about how it effects you personally you may be able to apply for PIP there may be disability support organisations who may be able to support you through the process in your area

Ralphy40 profile image
Ralphy40

Yes. The Equality Act 2010 states..'You are disabled if you have a physical or mental impairment that has a substancial and long-term negative effect on your ability to do normal daily activities'. The fact you have had to sell your home and are being aupportes by your mum should show the impact its had on your life, eapecially if previously you worked regularly without any problems. Whether the government will give you PIP I dont know, I agree with ldwilliams make sure you get help completing the form to make sure you give yourself the best chance. Not sure if you have tried medications/other therapies but maybe showing you have made every effort to try and manage your symptoms yourself(tried everything going), may help your case. Good luck.

RobWilde profile image
RobWilde

That's very insightful, thankyou very much for the replies. I'm unsure what I will do just yet but this may be a road that I'll explore soon.

Nicki1984 profile image
Nicki1984

I think so. You would need to be assessed. How much financial support depends on different factors such as mobility and how able you are to look after yourself when at home. They may need to speak to your doctor or your doctor may need to also complete any paperwork. Worth looking into. Good luck x

RobWilde profile image
RobWilde in reply toNicki1984

Thankyou :)

RobWilde profile image
RobWilde

im self employed, i would love to be able to go back to work full time.

Oh my goodness Rob, I really feel for you. I find the worst part of my IBS is nausea as I have Emtophobia (fear of being sick or anyone else in the family being sick) so this makes me really nervous if I feel nauseous.

I count myself as lucky as I can live a 'normal' life i.e. I can go out and go on holiday. I am able to manage my symptoms with diet but I can see you have tried this to the 'enth degree' as you can only eat very limited foods and also had many tests.

I've no doubt that you have been on line many many times looking up your symptoms. Not sure what else you have tried but I receive emails from Kerry Madgwick of Natural Solutions for Increased Energy and Optimal Health, email address: Kerry Madgwick <kerry_vlf@btinternet.com>. There is a chance that Kerry may be able to help you, even if she can't it may be worth a try contacting her.

I wish you all the very best and hope that eventually you can live a normal life.

Take care

Alicia

RobWilde profile image
RobWilde in reply to

Thank-you, i will investigate that, but im starting to think theirs something more sinister at play here, Perhaps i just have a really crap hospital. or perhaps i do have a very serious IBS. i feel so mentally drained and the thought of starting all the tests again is tiresome. Thanks again :)

in reply toRobWilde

You are welcome and I really hope that she can help you. I'm like you though and think is there something else that they haven't found, it doesn't have to be sinister though to cause such debilitating symptoms and such a restrictive diet.

Have you ever been admitted to hospital so that they can carry out a series of tests rather than you having to go back and forth, there are bound to be some tests they haven't even though of. I've no doubt you have been online looking up your symptoms as most of us do but is there something that you have found that you think you could have? I read a lot of magazines and I have read so many stories where people are so poorly but doctors keep either fobbing them off or they don't know what is wrong so the people keep researching until they come up with something that has either similar or the same symptoms. Once they have found something they go back to the doctors/hospital and then insist on being tested.

I really really hope that you find something that will help you.

Take care

Alicia

RobWilde profile image
RobWilde in reply to

Hi Alicia, sorry for this late reply I think I just went into hibernation. Yes I've been admitted to hospital once even having to phone an ambulance, I've had an ultrasound, endoscopy with biopsies, CT image scan, countless blood and stool tests. I am starting to suspect it's somthing called gastricparisis as I've found out this can be triggered from food poisoning and comes about due to damage to your Vegas nerve. I seem to have a lot of these symptoms and I'm thinking of asking my doctor to refer me to hospital again so I can undergo a gastric emptying test. But Im scared to be insulted again. Thankyou again for your concern, if anything comes about from this I'll update :)

in reply toRobWilde

Hi Rob, same here 'sorry for the very late reply - I have been on holiday for which I booked as a surprise for my husband's 60th and just got back late this afternoon.

I've never heard of Gastricparisis but I would certainly go back to your doctor and ask for the test. I really feel for you with the experience you have had with doctors, it angers me so much as at the end of the day you know your body and you know what's not right with it. I don't know where we would be without the internet sometimes as a lot of doctors haven't heard of quite a few illnesses and it's people like us that carry out the research online and find out that we are presenting symptoms similar to certain diseases.

All the very best of luck and please report back.

Take care

Alicia x

chadd profile image
chadd

Hi Chadd here I have recently done some research into claiming PIP and have discovered that IBS is described as a unseen disability I just Google the question is IBS classed a disability and the answer appears to be yes as shown above, this has been of help to me hope it will be of the same help to you

RobWilde profile image
RobWilde in reply tochadd

Thanks Chadd. of course i dont want to live with IBS so im reluctant to except it. But if i carry on without getting better ill have to go down this pip route.

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