I read quite a few messages which describe RA as the invisible illness nobody quite understands or believes. I'm sure my managers fit into this category as they don't take my difficulties seriously, but now see me as someone whose not performing and they are trying every which way to force me to leave after years of good service. I've almost had enough and am on the verge of quitting. Sometimes I even catch myself thinking I'm guilty of misbehaving - which is what they are trying to make me believe. Maybe I'm going slightly mad, or maybe it's just that my sense of fairness has just been turned on it's head.
I feel my work environment since December 16 has been systematically degrading towards me, without any reason. I was so stressed and depressed last Sept that I couldn't go into work. I just don't trust my managers and now feel totally paranoid. I requested a transfer to another team but this has been refused so many times, even after 4 Occupational Health recommendations. I'm 58 and losing hope now of ever having another well paid job.
It's so hard to have RA and then to be punished for having it! But I do realise that this situation is temporary. I really want to end it now by quitting and moving on but realise it won't be that simple - I'm now damaged goods!
I'd love to hear from anybody else whose been in a similar situation and is now in a better space.
I just wanted to say I think it’s disgusting that you are being treated this way.
I unfortunately don’t have any experience I can offer you as my manager has been supportive so far. Although this is after me having quite an in-depth one on one to explain how this awful disease can sometimes make me feel and together we asses how I am doing on a daily basis. It doesn’t sound like your manager would be willing to offer you this and if your relationship has broken down you probably wouldn’t feel comfortable. I am actually currently not able to work as I am suffering with vertigo brought on by a flare and although I feel guilt for this it’s luckily not coming from my employer.
You should not feel punished and you should not feel that you have to leave your job. This disease is relentless and you shouldn’t have to worry about your career as well as everything else there is to contend with.
I am sure there are others on here that can point you in the right direction regarding advice and people you can speak to as I am sure what your employers are doing is not legal. I just wanted to let you know you aren’t alone and don’t let the bullies grind you down! If only they had to walk a mile in your shoes for a day they would understand.
Thank you for your words of encouragement. I'm so glad you have an understanding manager - it's good to hear that they do exist.
I probably do need some professional advice. My union rep is supporting me at meetings but offers little else so I do feel as though I'm on my own fighting against an enormous government department, with all its legal and HR advisers on hand.
This whole experience has taught me that I need to manage my stress levels better though. RA and stress really aren't compatible!
You are right though, they have systematically bullied me by isolating me, excluding me from discussions, limiting my access to learning and development, challenging what I do and generally providing virtually no support or encouragement. It's been the worst year of my entire career and I'm hoping it won't be my last. I do feel crushed - depression has set in unfortunately. It's horrid.
So sorry that it’s making you feel depressed but I can fully understand why you feel this way.
No matter who you work for discrimination is discrimination. RA is a recognised disability and it shouldn’t be dismissed. I know you probably feel like you haven’t got much fight left but they don’t deserve to win by pushing you out of a job that you are good at.
I really wish you all the best and hope your employer doesn’t get away with this treatment.
Sending you lots of positivity and like gnarli, big virtual hugs.
Why are you damaged goods ? if you don't put a high value on yourself then no one else will. So are you sure this is real or as ra can cause depression in some cases that you're not feeling put upon and fogetting th good stuff. I just hope you are in a better place very soon but please don't feel that RA is just like any other disease in that it can be controlled and you will lead a normal life. I'd suggest a chaat tom your GP might help and even a couple of weeks off to get the MOJO back. But don't give up on yourself life is great for the vast majority of people with RA it's just that sometimes it does take a while to get treatment right and sometimes it flares up. Give yourself permission to get angry if your being unfairly treated and talk to your union rep. But above all don't allow yourself to be pushed into doing anything that is detremental to your self esteem or health. x
I do know I'm very good at what I do and maybe this is partly the reason why I think my seniors are marking me down at every opportunity - as well as trying to build up enough evidence to dismiss me for poor performance. They have made my working life extremely difficult - setting me up to fail is the way I now reflect on it.
Yes, I have considered the effects of having RA and all the meds im taking, and know I have much less energy and feel tired most of the time. But when I got RA in 2014 it was life changing. The meds kicked in virtually straight away so I launch fully into my career again, taking professional exams, performing well etc. But then I was transferred from one govt dept to another in a December 2006 (TUPE) and from then on I have felt totally marginalised.
I'm now feel damaged because I've been off work for 8 months, trying to understand why my managers are marking me down and hopefully transferring me into a different role where the rest of my team is in the same location. My not being able to travel over 4 hours a day to the other side of the country 2 to 3 times a week has been a big issue. This was their expectation from day 1.
Sorry if I'm coming across as being defensive - it's not meant to be. And thank you for your thoughts; interesting.
i was not saying your defensive just don't let yourself be boxed into any situation. i was local government and the union was great. Stay strong my dear.xx
Hi there.Heart goes out to you for the way you are being treated when so ill.Generally people are ignorant of this disease and the many ways we are affected.Not only pain and immobility but tiredness memory problems stress to name a few.I think because the word arthritis is used it makes people think you have a few aches and pains.The general awareness is poor lots more needs to be done to inform people of the seriousness of this illness.I was a nurse and was told that another nurse was able to work with RA when I tried to get my pension.This girl was off sick a lot and told me she had a mild form of the disease whereas I had severe RA and had to use a wheelchair before treatment sorted.This is where Consultants could really help by confirming how ill we are.Their word would be taken as evidence.Most of the Consultants where I live take no part in work pensions or pip claims as they do not get paid to do it.If NRAS are reading this and the many other posts about the problems people face regarding poor treatment at work and worrying about money matters as well as being ill please listen and try to do more to help as we are really up against a brick wall and most definitely alone.
Extremely well articulated - thank you. You are so right - spot on I think.
I think some managers think of it as a joke, because that's how it used to be portrayed in sit com.s. This was my recollection of it until I found out the hard way. It was cruel to mock it then and is even more cruel now as we are all far more aware of disabilities/abilities. There's so much catching up to do with all invisible diseases, not just RA.
I had no idea it was a disease for life, that the route cause is as yet unknown and, that somewhere I read it actually reduces life expectancy by 10 years (but that's not taken into account when you consider taking early retirement). Maybe, the fact that more women than men are affected, means that a blanket rule over pension right might be classed indirect discrimination. I wonder if this has been challenged?
And you are right that everyone is completely different and react in many different ways - that's very evident from reading these blogs.
Like you, I hope that NRAS recognize the significant problems we are facing (on top of daily living challenges) which can be far more stressful and depressing. Fingers crossed.
Many thanks for your input and I'd recommend doing the NRAS current survey to add your comments. I have.
Hi Linda.I did complete the survey and can only hope it makes a difference.There are Arthritis societies here where I live but they do not have anything to do with work or the financial problems people with RA face just raising awareness which as far as my experience goes is not working.Thank you for your reply it is good to hear from someone who understands .Take care. Patricia.
Please don't quit. If you do all the bullying has paid off for your managers/employer and they will have destroyed your career, possibly to go on to do this to someone else. Maybe try the Citizens' Advice as a first step. I hope others here will be able to advise on a positive way forward. RD is a depressing disease in itself and you really don't need any extra distress or stress. Huge virtual hugs
My visit to CAB was months ago. They said my case involved discrimination so suggested I seek professional legal advice. As this costs a fortune, I've been trying to avoid taking this route and hoping my employers will just transfer me into a different work environment. However, maybe the time is right now to seek proper advice.
I probably have grounds for constructive dismissal but there may well be an easier and quicker solution through an employment tribunal. I've suggested mediation as an option but my employer isn't interested.
You are totally right about doing the right thing and not giving in.
It reminds me of the years I had children and the amount of discrimination I had to deal with back then. It's so different nowadays. No more expressing milk in the Ladies!
I understand how you feel. The same has happened to me. It is certainly an invisible illness.
In March I went home sick and been off sick since. I’m waiting for my work pension to come through Which will not be very much at all. I’m 58 and another 8 years before state pension.
Since-being sick no one from work has been in touch with me to see how I am.
At the time I was was very tired and had already reduced my work hours and was being expected to do the same as my colleagues who are full time which caused me to make some errors which I was being disciplined for.
After going off sick my vitamin D level was found to be very low and Blood pressure was high. I’m now taking tablets for the high BP and had a loading dose of vitamin D which has now stopped to increase vitamin D level. Last 2 times my Vitamin D level was checked 2 weeks after completing the course but this year it wasn’t done. It’s been about 4 weeks now.
This is the third time my vitamin D is low over the last 3 years but I can’t be given Vit D on prescription as I need to buy them. Finanacially I can’t afford to buy them.
I saw the consultant in April and basically skimmed through everything quickly and I was out in 5-10 minutes. So felt I wasn’t reviewed adequately as they missed my swollen wrists.
The few days I have had extreme tiredness and sleeping a lot. I may have done too much or my Vitamin D level is dropping again.
For me going off sick took a big weight off my shoulders. I hope you find an answer as Natalie says not all managers are the same. I work within the healthcare and work as a nurse. You would think they would be more helpful but look at you as a numbers and not a person with 3 long 3 long term conditions. They wanted me to relocate but my RA mainly affects my upper limbs so ward work is not the solution.
I hope you can find an answer soon
Regards
Matilda x
Hi Matilda
I have heard about low vitamin D being a problem with RA but must admit, I don't know much about it. You seem to be defaulting back to a deficiency for some reason so I really hope you can find a solution - permanently. Isn't folic acid linked to vitamin D?
It is just so upsetting that, along with all these symptoms we all seem to get we also have to contend with defending our work too.
I've even had to prove that my contract allows me an hours lunch break entitlement - because otherwise they think I could just grab a quick bite to eat in 15 mins and hardly leave my desk all day. Then they wanted Occupational Health to make the recommendation before accepting it.
I just hope it will be much better for future generations, when managers will be much more aware of their responsibilities. Equality seems to take its time to bed in.
A support group specifically for work related issues might be useful as I'm sure we're not alone in trying to get managers on side.
Hi Linda I've read your post and it broke my heart . I understand exactly how you feel I felt the same and having waited for nearly 10 years for a diagnosis I truly thought I was mental and I was imagining the pain and disability . On my last and final flair the clinic I worked in was moved 15 miles away from where I lived it is an awful journey taking over an hour on a good day wants you get of the country roads I knew that I was getting up a 5.30 to be able to load enough pain killers down my throat to be able to move and I could barely get out of the car by the time I got home . This pushed me over the edge I truly wanted to not be here I felt a failure at home with my husband and kids and a total burden and waste of space at work . I ran and they started a stage 1 after two weeks which then my manager and HR turned up at home and advised would go to a stage 3 the union was useless and I resigned as I was in such a dark place . Two months later I'm diagnosed with zero negative RA and AS started on Humeria . I am heart broken that my manager did not support me infact she left to start consultancy work two months after I went I was just the collateral damage . Do not resign let it wash over you it's easier said than done but if I could do it again that's what I would do . I think no one now would employ me regardless of my skill set as my sickness record would be taken into consideration and the disability act means nothing to a corporate organisation unless it's making them look good . Be strong get better and get ready to fight . Get advice and pace yourself . 🤗🤗💐
I was pushed into the corner and had no choice. I was heading towards phase 2 sickness and together with the disciplinary. I went towards retirement firstly looking at Ill health but told was unlikely as well as take a long time too and also was told there are lots working with RA so went the normal way but will not get very much at all.
I see someone who worked for the same nhs trust as me but in a different department and they say I was pushed out to allow someone in who had no ill health like me.
Hi Matilda.Really feel for you.I was a nurse and could not work anymore due to severe RA.I had medical insurance and was able to see a Consultant quickly and eventually started on RoActemra which has helped.What really upsets me about your situation is that you have no support.I knew myself that I would not be able to work again and trying to get my pension 2yrs early at 58 was a nightmare.In the end I managed to get it by fluke .The arthritis societies should do more to help people in your situation as you are not alone.It appears to me that if you say you cannot work your are considered a shirker and a liability.I am thinking of you and really understand the stress you are under as I am still traumatized by the way I was treated.
Hi Nessa,
Thank you for sending me your experience. I can fully understand why you quit and I feel angry towards your managers - could they not see how difficult you were finding things? It seems to me that there needs to be a massive change in mindset before corporate organisations start to recognise and fully embrace their responsibilities where all disabled people are concerned. This dismissiveness happens far too frequently to be ignored. You have persuaded me not to quit but to make a stand. I'll need support too - and not from my union.
The ironic part of my experience is my employer is the department for work and pensions. They are the dept who are assessing people with disabilities as being able to work - and expecting other employers to accommodate all our needs when, at the same time, their approach is to take issue with us. And I'm definitely not the only one they've tried to dismiss.
However, my sickness record is a huge concern to me - like you, I believe it will restrict my opportunities in the future, even though I'm well qualified and have the skills. I wanted to carry on working another 8 years - I loved my work. I'd like to get back on track too, so need to keep this in mind.
Thank you so much for sharing. It means a lot to me.
Hi, I must say that I was in a similar position a couple of years ago except for the fact that my employer was very supportive. They provided all the necessary special equipment I required from chairs to voice recognition software. I was allowed to work at home a couple of days each week but crucially was not allowed to reduce my hours. The only reason these things happened was because I had regular meeting with my manager and occupational health to discuss the difficulties I was having AND I put everything in writing to ensure there was no confusion. The dwp should not discriminate again you, it's illegal, so make sure you stand up for your rights and keep all the evidence on meetings etc.
Even with all the support I finally had to admit defeat after a series of ops on my hands and shoulders and gave up a job I loved after 42 years, but I was given a choice to take either medical severance or VS. I opted for VS as it was more financially beneficial and I didn't want to have a record of being unable to work. 2 years on I still miss working but I'm much better off health wise. So my message is, persevere with your employer to get the best outcome for you whether it be staying in a job you love or making sure you are well rewarded if you decide to leave.
Hi Linda I'm really pleased take it to the wire . I worked NHS so it fascinates me that government organisations seem to be the worse . It is hard and the union I have to say were rubbish good at giving advice but never someone to assist you on the face to face . I know so many people have amazing support and managers/employers but looking on this site there are so many that do not and even with a disability act in place are forcing themselves into work . I wish you luck don't go to the dark side rant off if you need to . 💐🤗🤗
My work have generally been good at helping and I am currently starting the process of medical retiral.
Have you spoken to them about the Equality Act?
They have a duty of care under that act to make reasonable adjustments to allow you to remain in work and as such they would be very silly to ignore that.
Do you have a union rep you could talk to? It makes things so much easier if you have union support.
Very best wishes and don't be bullied into leaving xx
They suggested ill health retirement to me in early January and then told me that I probably wouldn't get it as they hadn't yet exhausted all the other possible options eg transfer to another job, reducing my hours, (treating me with respect and dignity - I added this one!). It's still an option though but I have been told its a very long process.
As for the Equality Act, I requested an Equality Act transfer in April. This was refused because they couldn't see any evidence of a medical reason. So I had yet another OH Report 2 weeks ago and will find out Management's reaction to that next Tuesday, hopefully. My manager is 2 grades higher than me but relies on an "HR Expert" for advice. No decisions are made without him taking advice and he often goes back on what he's agreed to in meetings.
They have agreed to various Adjustments, but it's taken an age and the main adjustment has been rejected umpteen times ie a transfer out of that business area and working with a team in my location.
Many of the adjustments are not specifically for RA though, it's just what they ordinarily provide for other staff ie an understanding of what they are expecting me to do, honest feedback, support for learning and development, being available if I have any queries, including me in discussions, listening to me! That's why I can't bring myself to go back to the same team.
I do have a PCS rep and having someone else there with me is a god send, but her time is limited to meetings.
I have read on-line so much about the Equality Act, Injuries at work, Tribunals and looked into past cases - especially those which win on appeal. My GP tells me that my particular employer are complained about regularly.
Some days I do feel quite normal and on top of things and those days are just fantastic, but these are rare. I've now been persuaded to see it though and not quit. They really need to change how they are treating people.
Thanks for listening to my rant, again. It's so good to be part of this community.
I am having very similar problems. My managers have also not only been unsupportive they have made my life more difficult. They then were going to put me through a Capability For Work procedure. When I called my union for advice and explained what had been going on they said that
the way that I am being treated is unacceptable and that I should take out a formal grievance (failure to make reasonable adjustments). I have done this and now I am off sick whilst my grievance is investigated. Like you I have long service and find this all very upsetting. You should definitely get some advice. If you aren’t in a union then go to the citizens advice or ACAS.This is so rubbish, as if it’s not hard enough dealing with this disease and battling the effects of medication without having to fight for what is our rights. Please message me if you wish to talk this over.
So sorry to hear that you are going through the same thing! I actually don't think I would have believed anybody else if I hadn't gone through this too. And once you're in this position, it's so difficult to convince anyone that it's not you. That's been my experience anyway.
I really hope they take notice of your grievance but please don't give in if they don't find in your favour. Apparently, although the process is fair in theory, in practice it's still your employer who is trying to limit any damages. ACAS recommend you go through this process but the outcome is rarely in your favour.
I'm now determined not to let them win - it's just so wrong what they are doing. Considering we are now expected to work until age 66 or more, they can't then find ways to dismiss us. The whole thing hasn't been well thought out because, if we are targeted in this way, we could end up unemployed, then ESA would find us fit for work and the Job Centres will end up sanctioning us once they realise that future employers are unwilling to take us on. I really think this will become a massive problem over the next year or so.
On top of this, and probably because of this, my RA has fueled itself up again and I can hardly move my hands and shoulders. And my lymph nodes are really swollen too, which is a worry. As you say, our health concerns are always with us, and must come first.
Please let me know how you get on, I'd be very interested.
I have requested early retirement due to ill health, I also have Crohn’s Disease. I don’t know if I will get it but I am not going to give up. I had really been struggling at work and the way that my Managers were treating me made me feel powerless and worthless. The Union response gave me a little of this back. I have had a number of meetings with OH but they really don’t understand this disease and how it affects me and also how variable it is. OH opinions also seemed to carry very little weight with my Managers. Only people who have this disease understand the extreme, life limiting fatigue (not just that I need an early night!) although I have pain and stiffness the brain fog, problems with concentration and memory are my most difficult issues. Before I was diagnosed I really thought that I had dementia and I was terrified ( at times in tears at my desk and phoning my GP) I shared this worry with my Manager which fell on deaf ears. I have been off sick for seven weeks and have had no contact from my Managers or colleagues apart from acknowledgement of receipt of my sick notes. I am so sorry to hear how this is affecting you.
Hi - I can totally relate to your experiences as it almost mirrors what happened with me.... I ended up on anti depressants for the first time in my life because my managers had made me so miserable that I couldn’t go into the office without being in tears constantly,and this is the polar opposite of how I used to be!! If you want legal advise,and can’t afford it,then please use the disability law service - they’re completely free and in my case they did wonders,esp when my manager made the glaringly obvious mistake of discriminating against me by making me take unpaid leave because I couldn’t physically travel into the office,yet let another employee work from home for the week just because he’d stubbed his big toe on a rock!! Seriously,you can’t make up how petty some power crazy people can get. Anyway,on the advice of the lawyers,I got the head of HR involved,instead of just a form ticker,and loved watching her face literally drop when she read the legal advice if been given stating that I had a claim for discrimination..... she certainly made sure my manager behaved after that incident.... no more snide comments or innuendos at my expense anymore. Give them a call,it’ll cost you nothing for their advice,and in my case,it really did make all the difference from me just walking away from a job I’d loved upto that point.
Hope all works out for you
Nicki x
Hi Nicki
Really glad to hear that your actions actually paid off - I needed to hear a good outcome.
I've been trying to draft out my particular grievance and find it difficult because my management approach has been to belittle me every time I raised a concern - so I ended up thinking it was me not being understanding enough of their difficulties. However, when they marked me down I saw red. It's only after I have sat back and looked at the whole experience objectively (well, tried to) that I realise now that they were aiming to get rid of me from the day I transferred onto the team.
Unfortunately, this involved three layers of management above me (at least). Our team of 22 staff transferred in Dec 16 and the eldest were forced to retire within a few months and only 7 now remain in post.
There is just no way I can go back there as any trust has been wiped out - I just don't feel safe.
So, if they don't transfer me elsewhere in the organisation I will be going down the legal route - which is scary and something I could well do without but I don't think I have any option.
I am a single mum with three children (the youngest still at University) and have struggled for the last 20 odd years to make ends meet. I'm now at the top of my profession and should be saving for my retirement - this was the plan! Yes I am bitter.
I've also just watched the Richard Dimbleby Lecture on Woman's Equality through the last 100 plus years, and that's got me fired up too!
But then, maybe it's just that lower management need more training in this area, which could prevent so much heartache.
Thanks for responding to me. I've found all the responses so interesting.
Hi I had similar problems at work comments like "such and such has had to go home because there really ill" or what you doing today nothing much I suppose or I've herd people saying she's putting it on and that's been from my coworkers who I've worked with for years. I had a fit note from Dr's wich had reduced hours and light work only on it maybe this would help you .don't give up I started taking pictures of my joints when they got really bad n had to have time off and explained that it was a disease rather than just joints being affected it can effect heart and so on .....failing that quote the disability at work act and reasonable adjustments don't let them grind you down , I didn't and now there's never no negative comments said to me(maybe they still bitch behind my back )but I don't care they don't have to live with it I do and I'm happy in my work i do hope you get things sorted soon xx
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