British Lung Foundation
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The hidden fear of having an Invisible illness!

To the outside world I look normal, and from time to to time I get questioned why I don't work. I sometimes get funny looks when I use a blue badge or even get challenged. My condition is variable not just from day to day but hour to hour. And I live according to how I feel at that time. So if I feel I can mown the lawn, cut the hedge etc I do it. Okay it takes longer than if my husband does it, but when ever possible I want to remain independent. I have recently passed the new Works capability tests, and so in the support group for ESA and in receipt of DLA high rate mobility and middle rate care. I don't make it public what benefits I receive, but I was truthful when I answered the questions on the forms, and had the evidence to support it, but it is quite possible for someone who sees me doing these everyday things to report me to DWP for benefit fraud. I know that I am not claiming these benefits fraudulently, because people don't see what goes on behind closed doors, the tablets I have to swallow, the neb I have to use and the lines I have to put in to deliver meds directly into my system. The times I am sat up at night struggling to breath, or scratching like mad because my eczema is bad. They don't see me on the days when I can barely get around the flat or struggle to wear normal clothes when my skin is painful. In my mind I feel I should make the most of my good times, because I never know how long they are going to last, and beside for my mental health I think I should remain independent where ever possible. And yet in the back of mind from time to time I have wondered if those who know me have ever considered reporting me for benefit fraud.

This evening I received a telephone message to call a friend from her mum, I returned the call to discover that a dear friend is going through the hell of being investigated for benefit fraud. She is devastated, she works part time and the only benefit she rightly claims is DLA because she has the same illness as me. Her working hours and patterns have been adapted so she can continue to work, many with our illness do not, but she is determined to work as long as possible and the DLA helps her in many ways to do this. I won't do into details how she knows she is being investigated but she says knowing that someone is watching her every move is awful, the DWP investigators have a job to do I understand but with a variable illness like ours filming and photographing someone outside their home will not give you a full picture. The stress my dear friend is going through is dreadful and her mum is desperately worried about her daughter's health and welfare as a result. We can only think that someone has reported her who either has an axe to grind, jealous or simply doesn't understand about the day to day difficulties that she has to live with. Living with a hidden illness is hard enough when you often look normal, but cannot carry out the every day life task all the time, without having to worry about doing something normal on a good day and being reported for it to the DWP.

16 Replies

That is awful,hope everything works out for her and still can get

the benifit she

I work part time and find it hard going but know their is help out there and one day mightneed it also.There are a lot of nasty people out there who just get off in causing trouble for people xxx


With the invisible illness I have, (not COPD related) I quite often lose my balance.One morning I was sitting on my bottom on the wet pavement, luckily not hurt, when a bloke passing by shouted at me that i was disgusting to be drunk at that time of day!

People should never make assumptions!


my sister, who has spina bifida, was investigated - but it was funny because she had told DWP that she has a part time job and her benefits where amended accordingly.

She was "invited" to ateend a meeting at the local DWP.

She walked into the office and a man came in and sat behind the desk and a security officer stood by the door ( to prevent her escaping i guess) the man said " you are claiming benefits and working" she said "yes, if you check my file you will see i have informed you and you have a letter from my employer telling you how many hours i work and how much i earn" ( man fumbles with the file ) oh! Ok thank-you, you can go now!!!!!

turns out she was reported by someone and she has a very visible disability.


there are a lot of sick people about, and there are also a lot of sick people about, there are genuinely ill people, most of whom struggle by and try to be as independant as possible as long as possible, and there are some bitter green eyed people who hate to think that anyone is getting more than them, be it money or attention, and who judge other people on their own standards. I can always remember being shocked to hear my my mum saying that the world was turning into a hateful place and that she was glad she was at the end of life and not at the beginning, yet now I can see her point in a way, because as you get older, thngs do seem to get to you and annoy the hell out of you. sorry if am not making sense, I do know what I am trying to say, its a bit early in the morning to be concise.


Daxiemad, your friend must be going through hell. I hope it is short lived and that the person concerned has a day in the future when somebody is just as nice to them. What goes around.......


I understand what you mean.I also look normal if i dont exert myself. my brother also has copd and i did not understand till i develeped this disease too.The other day i tried to cut my grass and could not complete it,so my ex husband had to to it.He did not understand why i could not do the grass till i had to exsplain that i could not breath.I had to tell him that this illness can be life theating ,then i think he understood.Iv also told him that i need a disabled bus pass.I also have appied for the mobility part of dla,i will have to wait a few weeks to hear back from dla.


I to am shocked at the number of people who are bigoted if that's the right word about those on DLA , one of off our own family members invited us to a Barbi at her home , she drank a bit to much then in a loud voice singled me and my husband out saying it;s people like us who are robbing this country , i have chronic Asthma and Emphysema, my husband has a severe blood disease and has had a Heart attack and stroke he is incurable his bone marrow makes to many red cells but that didn't stop her mouthing off in front of everyone , suffice to say we no longer have anything to do with her .

Just lately a guy on a camp site we use thought he should tell everyone we get a free car as though we are scroungers i was very upset my husband faced him up as ill as he is and brought him down to earth the guy said sorry to me but the damage was done, we very much keep ourselves to our selves these days friends are few and far between, nosy neighbours are met with mind your own business when they ask what benefits we get , we have a young fellow who cleans the car and we pay him along with a guy who trims the grass in the garden , the nosey neighbours would be on the phone if we did it .

Its sad that society has gone this way and although some people do con the DLA it is a small minority who get the rest of us a bad name Daximad ignore these people they are not worth the stress they are also not worth talking to follow my advice tell them nothing let them try to guess what benefits your on it will give them something to do .

xx Glll .


Here, here! You should not made to feel bad about being a genuine claimant and your own family should know better. Stay as well as you can and hold your heads up high. xx


Amagram hit the nail on the head. There are a lot of hateful and hate filled people out there who just live to criticise everyone else.

They have an opinion about people on benefits who appear 'normal'; about asylum seekers getting loads of benefits (they actually don't get any until they are accepted as asylum seekers, which can take months, nor are they allowed to work so they have to rely on charities until that point); about young people; about old people; about poor people; about wealthy people ..........

In fact about everyone else except themselves and they probably class themselves as good Christians!

Lynne x


I do understand how you feel and I sincerely hope your friend can continue to get her benefits and not be spied on. Pete also looks well but like you, has to take each day and part of day as it comes. People just don't understand what others genuinely go through. Unfortunately, there are those who do claim benefits fraudulently but give all benefit claimers a bad name. It is all wrong and my heart goes out to you and your dear friend. You have to take each day as it comes and live life to the full. Good luck. xxxx


i think you are far better off without these horrible people in your life they just arnt worth it and family too how nasty i dont bother with anyone and i dont tell anyone anything because to me its none of there business but as long as you tell the benefits people the truth infirst place then it doesnt matter who trys to get you in trouble it will backfire on them and serves them right too iv been on dla for 16yrs now on high rate for everything so when i was diagnosed with copd/emphasyma yes i had to update them but because i already get high rate i dont get any more than i did already which doesnt bother me but these nosey people should just MIND THERE OWN BUSINESS and sort there own problems out and i hope everything turns out ok for you


It really makes me angry to hear of such a thing. We have enough of a daily strugle to contend with and all the problems that can arise from day to day. I sincerely hope that everything works out for your friend, Daxiemad. God forbid that those who would readily point an accusing finger are ever in the same position, wonder how they would like a taste of their own medicine?


My husband was once told he was "lucky to have a wife like me,cos it meat he got a free car," i was disgusted if only he understood,we BOTH have been robbed of our health,me the sufferer and him my carer,i would swo the car for health any day.ignore them,x


It really annoys me when people are so nasty and stupid! You know you are not defrauding the system!

I am on JSA and I get some nasty comments too - such as 'there are loads of jobs out there' and 'people scrounging off the state'. I either ignore it or point out that I have worked all my life and have paid 39 years of stamps. And that even If I claim benefits at the moment I will never get back a thousanth of what I have paid in over the years. People often backtrack then and say they weren't talking about me but all the other 'scroungers' so I point out that most people who are out of work want a job and why do they concentrate on the minority! But you cant argue against bigotry and prejudice.

When one woman said it I asked her if she had children. She said yes so I said well I have never had any and who does she think paid for her kids? me! You should have seen the look on her x


To quote a consultant in respiratory illness I have chronic and severe emphysema,most of you will know how this effects us.

I retired from full time work 10 years ago but worked part time until last year.

I was reported and investigated by the DWP about 5 years ago,I was called for an interview which was very intimidating,I was quite shocked how they had been watching me for quite some time,I answered all the questions truthfully and explained the "hidden illness"they said they had watched me for 3 hours and I had not used an inhaler,I asked them if I had gone to the toilet in that period,and explained I would have used my inhaler there,just because I was receiving benefits I still wanted to handle my illness with dignity.

Although angry at the time that someone with no understanding of our illness had tried to "shop"me my thoughts were that I was getting a lot of money with DLA and it is only fair that this could be scrutinised,As I said the interview was very intimidating ,they had even been to my place of work posing as a customer,I had nothing to hide and was able to answer all their questions.

The interview ended with "the tapes of this interview will be listened to by a decision maker ,you will be informed when a decision is made,4 months later I had heard nothing from them ,my benefits had not been stopped but it was still a stressful time waiting to hear from them,I finally asked my MP to intervene ,he had a reply for me within the hour,the decision had been taken that I should continue to receive my benefits ,but no one had bothered to inform me,clearly if I had not got my MP on the case they were not going to bother to tell me the outcome of the investigation.

One other point I was told the only person who could attend the interview was a solicitor acting on my behalf,I felt this was incredibly unfair to the vast majority of us who could not afford this,I was told very clearly that no else could come with me to offer support. I hope this information will be of some help.

Keep on puffing.



A further thought ,it is a horrible feeling that someone reports you to the DWP ,but ,there is this to consider for this rotten government to justify its attacks on disabled people and try to get away with it without losing electoral support ,it 's mounted a huge and very costly campaign to convince the majority of people that most of us are "welfare cheats"and disability scroungers".

Many daily newspapers especially the "daily Mail"and "Daily Express"are happy to support the government on this and almost daily run stories about "Builder claiming DLA whilst running marathons "type of story ,so it is not always jealousy or even ignorance that make people feel like this ,many people will believe the propaganda they are fed.



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