Hi all, I've been diagnosed with RA for about 5 years but had a lovely period of remission until just before summer holidays (I work as a learning mentor in schools in UK). I had a big flare up, this is the first time my RA has affected me in this job. I had to finish the term working from home and doing my sessions. It meant I couldn't do a couple of other aspects of my job.
I have been questioned about my ability to do my job, which at the time I couldn't answer as I didn't know if it was a flare or RA is back.
I work in a field where the busier you are the more affirmation you receive. That goes for outside of work too, and I am not a parent. So it is difficult to explain fatigue or tiredness when it is usually measured by being a busy parent, working long hours, managing a household and exercising.
I need to arm myself with ways to explain how I feel. If anyone has experience of this I would appreciate advice. I just want to feel good enough.
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Gem83
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Hello, I know exactly how you feel so would be interested to see what replies you get!! I know myself that from today I am no longer going to try and explain myself at work as hard as I try they all tend to see it as "just" arthritis and I'm getting subtle signs that my condition is starting to hold me back at work...such as a former manager has a great opportunity come up in his department for someone of my grade and everyone who was thought "suitable" got told about it....I wasn't asked 😢😢. Rewind two years ago and i just know I would have been!! It's made me feel very down but hey what can I do? Saying that some of my work colleagues were great last week when I had a accident at work last week but they are the few that get it! I'm just going to shut up from now on, with this blinking condition I think we are all working twice as hard as we have to prove ourselves. Best wishes to you, I hope you get some great advice 😊.
That's really annoying, I wish people could see that because of out we work harder. When my flare up happened i didn't take one day sick. But it seems that even just changing my work load has worked against me. We got a new area of work and I just can't do it as consistently as the other learning mentors. And suddenly this the most important part of our jobs. Without sounding big headed I've worked hard to be good at the job I was employed to do our teachers and the schools I work in are pleased with my work but suddenly it's not enough.
Like you the main staff have been great. Managers and a couple other learning mentors have I think complained because me not working in our new area affects delivery and the other mentors don't think it's fair. Why can't we work to people's strengths?
For two years now, we ran 1to1 sessions based on strength. I got nurture/self esteem cases. A colleague got ones where he could turn up and play football for an hour! No prep no planning. That was ok then...although not fair but now everything had to be fair. Meaning I can't do the job! Sorry ranting. It's just frustrating. Good people getting overlooked or made to feel not good enough
Please don't apologise...not ranting just letting your frustrations out which is what we are all here for 😊 It's so upsetting as we are still the same people inside? I totally agree with Sue though as in, why should we have to explain or justify our condition to anyone other than our Managers or ourselves? I've thought about it today after yesterday's upsetting episode and I don't think ANYONE I work with with has ever asked me just what RA is and I suppose why should they if it doesn't affect them!!! From now on if people ask I will tell them
But if not I'm not saying anything....you certainly have to develop a hard shell with this condition. Good Luck Gem...keep us updated x
it is hard for people to understand that fatigue is a part of having RA. I found the two leaflets helpful, you can always try getting your colleagues to read them:
It may not make them fully understand what you are going through, and you may find that some are just not receptive to the idea at all, but it may go some way to getting at least some on your side.
You should never feel that just because you are not a parent that this in some way means that things should be different for you. I'm a mum and I never felt as tired as I do now with my RA. I also work long hours, 12 hour shifts over 3 days/nights and having done this shift pattern for 20 years; I can certainly state categorically that it is not the long hours that are the problem either; my colleagues understand and sometimes refer to my occassional doze (for 30 seconds or so) as a "nana nap" and I am not a nana. A cup of coffee and them talking constently or a quick stroll around the building usually perks me up, but I still end up in bed as soon as I get home from my shift.
I do exercise, but only when I am having 'good' days (a vain hope to loose the excess weight) also as this may help with the joint pain.
I tell my husband that if he wants to feel how I do he should go 3 days without sleep and see how he feels; as yet he has not taken me up on the challenge, but I live in hope that one day he will realise that I work full time like he does and that he needs to help occassionally.
I hope everything works out for you, and that you again go into remission.
Thank you. I think some times I forget that I have this condition too and feel a little guilty for feeling tired when I see other people who are or seem busier. I think that feeling of being normal again creeps in and that makes it difficult. I will have a read of those leaflets.
I am very interested in reading what others reply to your post...I was diagnoised with RA last November, but I believe I have had it on and off since the begining of 2011. I spent all those years "working through" the on/off severe hip and back pain. I hobbled around the sales floor with burning swollen feet. I tied my toes together with duct tape as my toes were separating one toe started to drift east as the other was drifting west.
RA like other autoimmune diseases are hidden disabilities. It's because we look "normal" then people judge us....If someone wants to educate themselves on autoimmune diseases, I would explain mine...but I refuse to "educate people" on RA who just aren't interesed. Sorry for my rant. I just think some co workers or managers just don't care.
To make a long story short, is it worth your energy to explain your condition to "non believers"? Just do your job to the best of your abiliy and give yourself a pat on the back for a job well done.
I think it is a really helpful way to explain things, and can really make people think about your life in a way they can then understand a bit better.
At first I wanted to educate anyone and everyone about RA. But realise now that this depletes my limited energy levels further because next time we speak they still say things like "oh yes - haven't you got arthritis?" despite my previous efforts to inform them about the systemic nature of RA.
I think people who don't want to know have ostrich syndrome - and with their heads in the sand they also congratulate themselves for being relatively healthy - and dismiss me as one if those people who has somehow brought misfortune on myself. As I'm very healthy in lifestyle terms and usually look well too then I've obviously somehow offended the gods! It's as if RA is somehow infectious and talking about it will pass my bad fortune onto them.
So if I'm stuck with someone for any reason then I will move the conversation towards what makes them tick or speak about my other interests, or make them laugh and avoid the subject of RA entirely. This way I'll get something back and won't be only associated with poor health or moaning. If I need them to open a bottle for me or if I get up to go to the toilet with difficulty or can't easily walk away having stood speaking for too long - that will teach them more about RA than words can. If I'm tired and need my bed early or can't drink alcohol - spelling out why is futile but they still clock this and are more inclined to look out for me next time we meet.
Others quiz me and it's usually because they, or someone they know, has symptoms that are worrying to them. I've learned the hard way that there are the minority of the curious and then there are the majority who are incurious. You can't get through to the latter I've found - they will only become curious when it happens to them or their loved ones.
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