Impact of working and having RA

[Summerrain14]

I’m fairly new to my diagnosis of RA. I appreciate how fortunate I am to still be able to work currently. I am finding though that the struggle between managing my RA and working to be a fine balance. I am also finding that I am beginning to lose a lot of confidence in my ability to do my job. Emotionally I have real low self esteem and my confidence in being able to do my job. Does RA impact as much emotionally as well as practically?

[Hidden]

Summerrain14 Hello - I am so going through this at the moment too. I lost all confidence at work this week so gone from a strong confident work person to a teary and emotional wreck. Some of this is due to flare and learning work life balance.

I have dropped to 4 days a week and 6 hours as a temporary measure and have a fit note from the Doc to make sure I get full pay whilst I trial this.

I had to work over Xmas and doing 6hrs days and standing all day for 5 days in a row has meant I was wrecked this past week so I NOW KNOW I have to change. As boss was not flexible when it came to Xmas week and new system but the downside is I have suffered by feeling I had to deliver!

I know this means planning maybe a career change or getting my work to be more flexible if I can but a lot of this also depends on the boss you have too and the type of company you work for.

I am trying to be ahead of the game so things on my terms rather than RD or by the company so looking at what or how I need to change.

It is a huge impact RD and work but you have to think it through seriously as it impacts your health your take home pay and work/career too if you cannot get into remission that some have and back to 95% of themselves.

My fatigue is what is killing me at work at the moment.

Dee x

[Summerrain14 in reply to Hidden]

I’m so sorry to hear your current boss is not being flexible and you are now in so much more pain.

I so admire your attitude and completely agree with you. I’m just not sure as yet what it is I need to get this work life and RA balance right.

I have been referred several months ago to occupational health and despite chasing it I have not heard a thing as yet.

I am unsure whether to seek advice from my GP and rheumatology team but no appointments due for another five months with rheumatologist as have been seen in the last month. We don’t have a RA telephone line either. I know I can contact my rheumatologist’s medical secretary and an appointment will be made for me but don’t want to take up an appointment which may be needed for someone having a flare up.

I have an appointment with podiatry on the 16th January so will have a chat with them too. This last week I have been in lots of pain and only getting about three hours sleep and then having to face the day at work.

Thanks so much for taking the time to respond to my post.

Take care x

[Hidden]

Definitely especially at the beginning. it’s learning on the job( pardon the pun) what you think you can do in your head does not translate physically . If you suffer fatigue then your mental capacity and awareness becomes diminished and as time goes on you can learn to manage especially if your RD is under control. Fatigue is my biggest problem. For me downing tools helps shorten the flare and recover quicker. unfortunately it is very individual. Some people take a period of sickness till they are back on their feet others reduce their working hours. One thing for certain it’s not easy. I’m not much help but you not on your own

[Summerrain14 in reply to Hidden]

Fatigue is a big issue as well as pain at the moment. It is getting that balance between getting my pain under control and being able to still function. Not sure there is an answer to trying to function with the fatigue. Until about a month ago my meds did seem to help but got a viral chest infection and whoosh the RA symptoms are back. I had a steroid injection to see if that would bring the flare up under control.

I am making conscious efforts to eat healthy, gentle exercise and rest but still working on the balance. Weight is good now as lost two and a half stone last year to try and help with joint pain.

I honestly don’t know whether I should be considering reducing my hours at work if I can or not. I have had eight days off over the Christmas period and that did help my mood but pain has not eased up so sleep has been really affected.

Thanks so much for taking the time to respond to me. Knowing I am not on my own and having your support and understanding is priceless.

[Juliachoo]

Hi yes RA impacts physically & also emotionally, but only if you let it! As well as managing your work/RA balance you need to work on your self esteem & realizing your self worth! Despite the RA you are still the same worthy person who has so much to give. It might take you a little longer to do things but you can do them! If you are struggling at work talk to your Human Resources team as legally there are things in place to help you! Take control, don’t let the RA define you... kick it right back darlin! Good luck! 😘

[Summerrain14 in reply to Juliachoo]

Thanks for your supportive post. I am my own worse enemy at times. I am my own worst critic but I am trying to get a balance to be kinder to myself.

Sorry I should have said that I have been referred to occupational health but still chasing this as not heard anything at all. Finding the energy to chase this up again is something I must do. x

[Juliachoo in reply to Summerrain14]

Just remember you do have rights to help in the workplace & make sure you get it, xxx

[patsymay13]

Hi there Summerrain ,

I was diagnosed this time last year and I found that I did lose some confidence not only at work but doing things like going shopping on my own etc., with me I think it was having RD on my mind all my waking hours and trying to get my head around it, I am now a lot better with things I think because I have accepted it more and of course getting as much info as possible and this forum and NRAS publications have helped immensely, I feel that I am not thinking about it so much now , obviously when i feel pain things are different and i get more emotional but I do try to push on with things and try to carry on as normal as I can , it is hard and I do hope you can find your own way of coping with it ...

Jayne.

[Summerrain14 in reply to patsymay13]

Thanks so much Jayne. I was diagnosed in July so about six months into diagnosis now. The pain I am having at the moment is really impacting at the moment but I remain determined to do what I can.

I am the type of person that needs to keep as busy as I can or my mood will lower.

I’m having a bit of a flare up or worsening of RA symptoms at the moment so just need to try with the help of my medical team to get things settled again.

I have some decisions to make to ensure I get the RA/ work life balance right for me. One day at a time is something I have learnt fast. x

[patsymay13 in reply to Summerrain14]

Yeah your right it is one day at a time for sure, have you tried wearing hand splints or the support gloves can’t remember the correct name for them ..brain fog today . Also I have lots of them wheat bags that I put in microwave and hot water bottle in bed , it’s very hard to get your 8 hours when your in pain , hopefully your medical team will help you some more , also have you tried to ask for less hours , or you could do what deeb did and get doctor to write a fit note of light duties for a while until you get sorted and then you will get paid in full , I feel I am coping a lot better as each day passes so hopefully you will feel like this soon x

Jayne....

[AgedCrone]

Yes RA does erode confidence ,,,,,,especially when you are still trying to work full time when feeling so unwell......with your work colleagues probably not seeing any outward sign of a problem....& you not wanting to let them down .....that is a very very stressful situation.

Talk to your rheumy nurse & ask her to advise on a plan to get your RA better controlled....I’m sure she will see this situation very often.

I don’t know what sort of work you do, but talk to your manager & explain things, & ask for either a reduction in your hours, lighter duties,,,,,or even take a period of sick leave to regroup.

There are employment laws companies have to obey, but if possible try to work out something on a consensual basis.

I know that sounds a drastic step but unless you are superwoman it would probably be a good way to get your RA under control. Stress is a major factor in RA....& being worried about your job is not helpful.

As your meds start to work better.....you will find your confidence returns. ....& even if you don’t get full control straight away, you will be able to approach your work with renewed confidence,...knowing that you are “getting there”.

Hope things start to get sorted out very soon.

[Summerrain14 in reply to AgedCrone]

Oh wow you have completely hit the nail on the head with just how I’m feeling right now.

We don’t have access to a rheumy nurse outside of clinic. Any problems and I can contact my rheumatologist’s medical secretary to inform my rheumatologist. I just don’t know the appropriate time to do this.

I am seeing the podiatry team in just over a week so am trying to hold out until I see them to see if the advice etc they give can help a bit with the pain.

I work for a local charity and work in a hospital supporting patients with sight loss to ensure they are both practically and emotionally supported. I have sight loss and hearing loss myself. I speak to my manager every month and they are supportive in being as flexible as possible and have referred me to occupational health but still chasing this up as heard nothing. Just need to find the strength and energy to chase it again. Feeling a little daunting by it all as not sure what solutions could be put into place as my job is a face to face one and a drop in service too. I do need to explore if there are options though....

[AgedCrone in reply to Summerrain14]

If I were you I would call your rheumatologist’s médical Secretary on Monday morning.....being polite & leaving a “suitable interval” does not apply when you are first diagnosed.,,,you need to get on.

Make make a note of all that is worrying you.... including your feelings about your job, the café lack of pain control,& how you are feeling very apprehensive.

You certainly sound as if you need your medication to be reviewed.

Hopefully she will be able to speak to your rheumatologist and you can either see him, or as he is familiar with your condition he might prescribe more effective drugs. She might also be able to approach occupational health to hurry things along. ...it’s very handy to have somebody like her to chase things up.

I would imagine you are a vital member of a team who works one to one with patients, & builds up a rapport with them, & they wouldn’t want to lose you but if you don’t get help with controlling the RA you might feel unable to carry on. Don’t play the brave little soldier though....once you get the right drugs that black cloud does lift....but we often have to stand firm to get that understood.

Do you feel a couple of weeks off on some new medication might give you more confidence.....that something Is being done? Every one has different feelings about this.... I know when I was first diagnosed I was extremely grateful to have had some breathing space.... I had just retired.....so could take my time.....I don’t know how your time is spent but for a start, would you be able to go in maybe just in the afternoons ......once you’ve got over your morning stiffness?

Please don’t let it get you down too much. There is no average time for someone finding the right set of meds to control RA. As you can read on here there are many people holding down very responsible jobs once they get the condition under control.

I do hope you get some constructive help very soon.

[3LittleBirds2]

I fully agree with what everyone has said....it does affect your confidence and self esteem at work especially when first diagnosed as no one really gets the daily struggle even to just get out of bed to get there, let alone the commute and then the working day.

You can dish out leaflets and explain things to people but unless they really interested no one is that bothered as most have their own struggles going on. I reduced my hours slightly and have a later start time, but I had to put up with sarky “banter” which i put up with for so long then took it further.

I went from top of my game to bottom of the pile and being told I couldn’t take a lead role as I may be off sick!!! But as Juliachoo says if we let it, it will get us. Hopefully once your have medication sorted and get your head around it, with some possible adjustments you can get back to being you!

I find working really helps, as it helps to keep my identify and stops me wallowing in self pity...which is easy to do and of course at times allowed.

All my best wishes and good luck xx

[Summerrain14 in reply to 3LittleBirds2]

I completely relate to all you have said. I have to get up at least two hours in advance to be able to do the basics like brushing my hair and getting dressed.

The commute is a long one too so adds more hours onto your day so to speak.

I love my job but not sure I can keep it up full time at the moment but I keep reminding myself it is all such early days and to not make any hasty decisions.

Being part of this forum is great as not one person whether that be a work colleague, friend or family member understands the impact of RA. I also have Lupus too but because I look so healthy and put on that smile it gives the wrong impression but am a really private person so don’t want to burden others with how I am really feeling. For friends they just think tell me hope I am feeling better soon. It’s hard enough for me to get my head round how much my conditions can change so don’t expect anyone else too.

It’s a confusing journey isn’t it? x

[Jan31]

Hi I’m around 15 years into my diagnosis and have continued to work full time. I do work at home a lot and can work evenings and weekends so I’m really lucky, it’s very flexible and I can rest when I need to. Exercise is great when you’ve got the energy. Aqua classes can be fun, and Pilates. Getting good nutrition I found was a key to feeling better. I saw a nutritionalist specialising in auto immune conditions but nowadays there’s so much info available on line. Try Paleo autoimmune protocol.

RA is a disability so can attract PiP so that might be worth investigating. If you have support like cleaning etc it can help leave necessary energy to work. Depends on what lifestyle you want though of course!

I’ve found being diagnosed is like going through the grief cycle. I often go back to denial! GPs are a bit more aware now I think of the psychological impact and can arrange counselling or group activities. Rheumatology nurses can also be great for support and may have ideas. You’re definitely not alone. Good to reach out on this forum and the NRAS probably run support groups in your area. Take care.

[HappykindaGal in reply to Jan31]

The grief cycle! Exactly that. I was diagnosed four years ago and more recently, went into a total downward spiral. My clients are in healthcare and they urged me to have some CBT sessions. Apparently, it’s a form of ptsd that had happened. Three sessions, and it’s lifted. Never thought I’d end up having counselling.

[Summerrain14 in reply to HappykindaGal]

When I read the posts about the grief cycle it made sense. I have been proactive and am now on a waiting list for some counselling. x

[Angjoplin in reply to Jan31]

I've been diagnosed 20 years and feel so down at the moment. 6 months ago I was all good and in fight mode. You've hit the nail on the head with grief cycle.

[Summerrain14 in reply to Jan31]

Thanks so much for responding to my post. It really has made me feel a little better emotionally and no longer on my own. x

[HappykindaGal]

I think it does erode self confidence, yes. Then the issue can spiral downwards and you really want to avoid that. I went t for CBT therapy, just three sessions and it worked wonders for me. It may be worth considering. You will be in a better place emotionally to deal with issues and approach your work colleagues and manager.

Dependent on your work and who you work for, depends on your options now. If you have access to occupational health, I would suggest taking that route as they will support you and liaise with your manager. If you work for a small company, your options are much more limited and I would urge you to have a conversation with your manager/owner. Perhaps working from home could be a solution? Yes, there are laws in place to protect you, but, they do vary as if it’s a small company, they may not be able to what a large company can if it doesn’t fit with their business. Talking is the way forward.

[Summerrain14 in reply to HappykindaGal]

Thanks so much. I have been speaking with my manager who is supportive as much as they can be. He referred me to occupational health but we are both still chasing this as not heard anything to date after several months of the referral being made. x

[Mouseling]

Oh yes it impacts massively on every thing. I would call it a roller-coaster of emotions. Everything you have known has changed. The diagnosis, coping with your symptoms that can change constantly. The misconseptions as to what RA is from other people. Taking meds that may not work, trying to find one that will. Other unwanted effects from the drugs.

Whether you have good support from friends and family, and of course when you are working how your employer and colleagues understand your 'new' situation.

NRAS have so much information to help you. They have a book all about the emotional mental impact and the effect on your relationships. You can phone and talk to volunteers and people who have RA. It is the most wonderful support for people.

Everyones experience is different but one positive is that people from NRAS and on here 'just get it'. No explaining someone will have some advice and will have experienced that thing you are feeling at that moment.

You will grieve for what was, you will cry be angry, frustrated, infuriated, you will find strength you never new you had. For you I hope your medication works and your RA can be controlled quickly. Allow yourself to feel whatever it may be. If you are going down to far with emotion and mental 'stuff' tell someone, speak to your Dr a friend, a counsellor, family.

Look for one thing every day that gives you some pleasure, however small, keep a journal writing it out helps, it is also good to record info for consultants and Drs.

You will have ups and downs, times when it feels too tough, impossible. As hard as it may feel at times don't give up hope.

I was diagnosed in 2008. Low grade symptoms, medication made me ill in other ways, up and down trying different treatments. My daughter born in 2005 kept me going and family. 2015 RA became much worse, on to biologics which worked but I had allergic reactions so not allowed to continue. 5 biologics later I am on a newer biologic called Tocilizumab.

Still cautious to say but for I yr I have my life back. I am living again. I remember the feeling walking up hill with ease, looking out at the view a feeling I can't describe... Pure happiness!

NEVER give up hope.... If you ever need a chat let me know. Best wishes, gentle hugs, and onwards into 2020. 😊

[Hidden in reply to Mouseling]

Mouseling I have loved reading your post ...very positive and full of hope.. thank you

[Mouseling in reply to Hidden]

Thank you best wishes😊

[Summerrain14 in reply to Mouseling]

Thank you for such a fantastic response to my post.

In truth I am just learning myself and am the worst person at being honest with how I am feeling with friends. I am so appreciative of my friends though as they appear to like me no matter what. I do always try to be as positive as I can though in fear of becoming a burden and bringing people down around me. I am such a people pleaser, not a great trait I know. 😊.

Are the times NRAS week day times only. My working hours are 9-5 Monday to Friday so not sure if I would be able to talk to anyone.

I have been proactive this week and am on the waiting list for some counselling now too.

Thank you so much for your supportive response. It means a lot. x 😊

[oliviagodfreyxx]

i can relate a lot !! i find myself thinking i’m not good enough for my job or good enough to get a new job, i remind myself and my family remind me that any job is a job! if you feel that your confidence is dropping please speak to your manager or family and let them know, there’s nothing worse than struggling in silence, i’m sure your manager can add in some slight changes to your daily work life and help, such as reducing hours per week (you might not want less money but trust me, self care is more important than working lots of hours a week) it’s important to listen to your body and rest even when you feel like you should be working, maybe your manager can give you more rest breaks during your shift, some time to have a drink, rest your legs/mind etc. it’s nice to surround yourself with work friends but don’t be too hard on yourself, take things easy, don’t overwork yourself because in the end it’ll only make the flare ups worse.

i find having a hot bath and watching some tv/ reading a book after work relaxing and helpful when feeling at a low point. in terms of low confidence and self esteem please talk to people ! you’re not alone and many people can relate and would love to help out. i hope you feel better soon and that work gets easier x

[Summerrain14 in reply to oliviagodfreyxx]

Thank you so much for such a supportive response.

I have been speaking with my manager but need to find the courage to speak to them again. It is just finding the right way to put things. Not my strongest asset. 😊.

My family are far away and I live on my own so it can seem lonely at times. I don’t want to worry my family either. Daft I know. I do have some amazing friends so am really blessed. I am one of those people who will shut myself off though if I am not my cheery self as would hate to be grumpy to anyone.

I need to learn to not be so hard on myself but am my own worst critic. x

[KittyJ in reply to Summerrain14]

Have you tried giving them some of the NRAS publications to read through ? Maybe it’ll be easier to discuss things with them after they’ve read them. 🤞🏻

nras.org.uk/publications

[Amy_Lee]

It happened to me also at the early stage of my RA. I was very lucky to have very kind and understanding bosses, they did not say much when I felt asleep during office hours. My condition got very much better when my RA was slowly under control. That took about a year and a half for me to be in remission.

What I like to highlight here is, it is never easy for RA patients during flare but the situation can be improved when our condition is under control. Just work on your RA positively, beside the medicines, exercise will certainly help to put us back into our normal self too.

[Nyreedw]

Just to give you some hope I've had RA over 20 years and I'm still working and fully active. Once meds are sorted it makes a massive difference. I only take naproxen and that is because I have OA in my hips and waiting for a replacement,I take nothing for RA. Be open minded to treatments and don't start looking for side effects as you can give yourself them psychologically. I've never had any. I was also single parent of 4 daughters x

[KittyJ in reply to Nyreedw]

Have you been able to stop taking Humira Nyreedw?

[Nyreedw in reply to KittyJ]

You don't stop meds. It's meds that keep you under control.bif you stop it will all come back with avengence.

[KittyJ in reply to Nyreedw]

You said you’re not taking anything for RA, that’s why I asked. So is that not correct ?

[Nyreedw in reply to KittyJ]

I was referring to pain relief. I don't take any pain meds for my RA. Without RA meds the RA doesn't just attack joints it also attacks the internal organs including heart lungs and eyes etc so not worth it.

[KittyJ in reply to Nyreedw]

Yes I know 😊

[netball7]

Hi, Yes RA is a rollercoaster of emotion on a continuous cycle. Sometimes you can get off for a short while but it’s always there to jump back on again but the length of the ride varies! Stress is a major impact on RA and I totally get where you are coming from with regards to work life balance. I was a full time teacher but found it increasingly hard to continue in my role, staff cannot see if you’re having a bad day and learners just made the most of it. As someone mentioned though, you have rights so perhaps initially sit down with your manager and explain your illness, a lot do not understand it, if that doesn’t help speak to someone from your HR there more clued up on rights etc.. Wishing you all the best.