Sick and tired!!!: I'm sick of being made out to be a... - NRAS

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Sick and tired!!!

alfagirl profile image
22 Replies

I'm sick of being made out to be a fraud, I had to give up my job in February, which broke my heart, as I hate being home, worked on and off since I was 16, and never claimed any benefits, so this is not by choice as I could no longer do it, I have applied for esa, went to doctor today to get sick note, I have just moved so she doesn't know me. Y cant I work I only have Ra and chronic fatigue, I never asked for this disease, if it was any thing else that would be fine would it!!!

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alfagirl profile image
alfagirl
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22 Replies

Oh Alfagirl you have my sympathy. When first diagnosed I was unable to work and applied for ESA but my claim was rejected after a farce of an ATOS medical. At appeal I was made to feel like a criminal and scrounger and it was pointed out that "We all get tired but we still go to work"!! It makes my blood boil just thinking about it. Luckily I have had good results with medication and now manage to work part time but you are right that we are made to feel like frauds. Chronic fatigue for me is more debilitating than the pain but sadly it is not understood by non sufferers. I hope you feel better soon.

Paula x

alfagirl profile image
alfagirl in reply to

Thanks Paulywoo its the same for me Chronic Fatigue is the hardest, I'm not on any Medication, my choice, had a lot of problems with the drugs, liver problems, and Chronic Fatigue was 100 times worse, couldn't even wash myself or move. I feel so alone, I would do any thing to have my old life back!!! x

Prairie profile image
Prairie in reply to alfagirl

That's so true...wanting the old you back...how can we accept what we battle with everyday...I'm not working due to my ill health and like you I've always worked. We can't always feel positive. It's not fare...The fatigue for me is the worse...and people don't understand...my hubby doesn't understand which makes it alot harder for me...I like to be around people who lift my moods...not make me feel worse than I am...it's really not fare....it's people like yourself who do understand what we suffer....sending hugs to you... Xxx

Philip profile image
Philip

Stopping work was one of the hardest things for me to do also and it does cause it's upsets and that's without the pains, 24 years for me being disabled and yes you do get threaded like a scrounger BUT your and never will be a scrounger, the truth is people get jealous because we don't work, they don't want the illnesses to go with it though lol.

I had murder trying to get incapacity benefit and when it was sorted out along with my DLA, this idiot came along and caused so much trouble and heartache for us, calling us this and calling us that, well let's hope the bullies are kicked out next year. Let's hope you sort your GP out soon, the quicker we teach them that they work for us the better lol, You'll be ok I'm sure because your amongst friends here.

Philip

kizzy12 profile image
kizzy12

hi...it is such a cruel disease because it is invisible and people cannot understand what fatigue is....i have not left the house for 3 weeks because of it.....with regards to your gp try another one at your practise..i went through every one at mine until i met my current one who is amazing...he has saved my life several times when i felt i couldnt go on anymore...remember with the esa etc you must let them know what you are like on youre worst day..get help from cab if you can....good luck and try not to let others get you down..its hard enough dealing with the disease day to day without worrying about idiots xx

Deejojo profile image
Deejojo

GPS just don't understand Hun I must say though my lady 1 is great but she's away on sabbatical until July I hope u get help soon bless u x

alfagirl profile image
alfagirl

Thanks for all the replies, I feel a bit better now, still cant stop crying, but we all do get days like this. its just a hard battle for us all, its not fair.x

Hope you're feeling a little better now. Sending hugs x

julie_warwick profile image
julie_warwick

soul destroying isn't it , I am on sick leave , but don't see me going back to this job unless there's a miracle , doesn't help when people don't understand , I get weepy days too , hang on in there x

benjijen profile image
benjijen

I know how you feel. I am 60 now and have worked full time all my life, even when my children were small (single parent). Never claimed benefit but now I struggle at work, through fatigue mainly. I can deal with the pain. No one else knows that I come home from work and pretty much go to bed as I feel so drained and often spend at least one day at the weekend in bed. Not out of choice as I think it's a waste of life! However, this isn't a life. I wish I could go part time but that won't be possible until I receive my state pension at 65, unless health forces me of course. I don't want to be at home all day. I hope you receive all the financial help you need. Good luck.

its so upsetting I filled in the forms for pip in october had medical in feb still waiting for report to be sent to dwp told I will be another 5 to 7 weeks have to go for dwp medical next I am 60 this year but cannot retire till October 2020 long road a head my doctor say I am too bad to take up work again but the rummy doctor just shrugs it off so heaven help us all trying our best to cope no one would choose ra over a job hope you get sorted soon,

norfolkjo profile image
norfolkjo

We alll understand xxx I too found the fatigue worse than the pain. Im going back to work after six month and it's all focused on the pain not the fatigue xxx

alfagirl profile image
alfagirl

I thinks its Disgusting that we are all make to feel like this, its not our choice, to sit at home day in day out, its no life no fun and I hate it,xxx

Jeanabelle60 profile image
Jeanabelle60

lots of people on this site talk about not being taken seriously when this disease effects our everyday lives. because we are not in a wheelchair or have twisted bodies like sufferers used to have they think we look well so we can't possibly be sick.....it is so maddening.......have a look at this site butyoudontlooksick.com.......it might help to get others close to you to have a look at it too so they will have some idea about what we go through.

alfagirl profile image
alfagirl

Thank you Jeanabelle I will have a look.

oldtimer profile image
oldtimer

Keep repeating to everyone that "I have an autoimmune disease, Rheumatoid Arthritis, which is affecting my joints and causing extreme fatigue, as well as ........"and fill in any other bits of you that are affected.

Get help from CAB or a website where they give help with these forms when filling in the forms. You need to get the exact correct language in the answers.

Remember that people do not know how you feel, what disabilities you have unless you tell them and tell them in detail.

Never say "I'm fine" My stock reply is "I'm as well as can be expected", when someone is not really interested.Or a I say that my hands are very painful today (they always are), if I think that they are interested.

I have found that I need to be matter of fact, unemotional and factual.When people say "You look well" I say "Isn't medication marvellous"

Best of luck

beeckey profile image
beeckey

I have a lot of pain in my feet and ankles and knees.I have just had my hands operated on and 2 hip replaced and my wrist fused and i still get that attitude as if i go through that for fun

nomoreheels profile image
nomoreheels

Just going through similar at the moment but with the Rheumy department. Diagnosed since 2008 but now attending a different hospital. First Rheumy I saw was my allocated one & thorough, very professional & although I rarely have much swelling did recognise my other symptoms of stiffness, pain & fatigue all as part of how I present RA. My titre score was 1280 as I'd been off my meds for 3 months whilst waiting to be referred. Quite a different story 6 months later at my second appointment with an "SpR in Rheumatology" who's parting shot was he thought overall he thinks most of my symptoms are due to osteoarthritis rather than inflammatory arthritis. So why am I still on MTX if that's his opinion? Next appointment is in July & just hoping that it's with my Consultant this time.

alfagirl profile image
alfagirl in reply to nomoreheels

That's not good, I some times think they have my wrong!! But my scans do show Ra, how can they not be sure!!! Hope you have better luck with your own consultant in July, Maybe u can ask your GP. x

nomoreheels profile image
nomoreheels in reply to alfagirl

Been back to my GP who checked me over & he's put me back on the steroids my Rheumy took me off at last appointment! Will probably have to take the flack for that in July or if I pluck up enough courage ask for alternative. I do hope you get sorted soon, it's no fun is it this limbo thing.

alfagirl profile image
alfagirl

Thank you Oldtimer, and Beeckey for the replies. Beeckey that is a lot to go through, having all that done, bless u xx

Unless you have RA I dont think others can understand the chronic nature of it. I look ok (I think) but I have not been at work since Feb and my employer is fed up with this situation.I'm sick of having to apologise for something I never choose and as hard as it is to accept employers have to follow their hr process and only care about the business. take care x

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