Feeling so hurt and upset

Cariad71
Cariad71 Member Posts: 99
edited 4. Jul 2014, 14:38 in Living with Arthritis archive
Hi,

I'm sorry I haven't posted for a while, I do drop in from time to time and read posts, but working long hours and being very busy mean I rarely feel up to actually posting.

I've had an awful week at work. My manager told me on Monday that basically, colleagues have been saying that things they've seen on my Facebook have contradicted that there's anything wrong with me and questioned why I can apparently do things outside work when I need to have adjusted duties in work. I was absolutely gobsmacked, incredibly hurt and upset and sooooo angry.

To give a bit of background, the posts she was referring to were for example, a picture of my husband and I jumping into the pool on our recent holiday. I'd also posted recently pictures of us out in the countryside. I've also been on my friends hen do recently (the first night out I'd had in a year). In hindsight the pictures are quite misleading but I still don't think people had the right to judge me so harshly on them and I certainly shouldn't have to justify myself. After an 8 month flare up I had a dramatic improvement in my symptoms while I was on holiday recently, which I think goes to prove how much stress worsens flares. During the last few weeks (thanks to a prolonged course of prednisolone) I have just begun to enjoy to do normal things again, and by no means does that mean I'm able to do anywhere near what 'normal' people my age do, but yes I was able to jump into the pool on holidays! (I'm 28)

The reality behind my pictures... When we went walking I managed about half a mile before limping and being in pain (and my husband had to carry me over the styles!) so we had to return to the car. I was in tears the night before my friends hen do because I was in so much pain I couldn't see how I could get through it and the thought of a night out was too much to bear. I was also worried they'd all think I was a miserable cow if I couldn't do things. My husband offered to come and stay in a separate hotel but just so he could be there if I needed him and couldn't do what all the others were doing. I did end up going but stayed behind alone while 14 other girls went go karting, and I wore ugly flat shoes on the night out and had to sit down frequently while the others danced (although the alcohol always helps get through the pain :lol: )

Someone apparently also commented that how come I could manage a long haul flight when I can't do long car journeys... Well I worried about the long flight for ages and even considered not going to the maldives for my first wedding anniversary. But I went and I did suffer for a couple of days for the long flight but it was worth it. If I do try and do normal things I almost always pay the price the next day or for several days/weeks.

It's upset me so much because they have absolutely no idea how much arthritis affects my life, and how I try so hard to stay in a full time stressful job with a long commute even when I'm suffering. I've got a better sick record than many of my colleagues who have no chronic illness. I've had slightly adjusted duties for a few months but by no means am I 'slacking', I'm doing just as much work as anyone, just not work that involves being on my feet all day, and I rarely take a proper lunch break etc. I just can't understand why people feel I'm not doing my bit, they also know I've been on drugs like methotrexate and steroids so surely they don't think I'm making it up?!

I'm sorry to rant, I just want to let off steam to someone who understands. It just feels so injust, they will never understand unless they go through this but I expect them to at least understand that they don't understand! I feel like taking it further as I think I'd have a case for discrimination but I've been so stressed this week and my joints have started flaring badly again, I'm sure it's due to the stress of it so I don't think I can.

wow, if you've got to the end of this, well done and thanks for 'listening'!
Xx
«1

Comments

  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    I'm not surprised that you're upset. What right have they got to judge you and why not just ask you questions if they are curious? I think their attitude is probably partly influenced by all those programmes that seem to keep popping up on TV about benefit fraud etc, and once again it's that dishonest few that spoil it for others.
    I'm fairly new to this, but when my problems starting I kept going for about 8 months on reduced hours before finally being sent home. While a few knew I was in a lot of pain, I tended to try to play things down as much as possible so some did grumble about me a bit and link me to others with less severe problems and worse attendance records, and then were shocked when they found out I needed neck surgery and would be off for 6 months. Sometimes being conscientious about work and having a keep going attitude actually works against you.

    On another note I am always wary of having a lot of work colleagues as friends on facebook because it is so easy for posts to get misread.

    Hope you have a good weekend and feel a bit better for letting off steam. Living and working with Arthritis is hard enough without that attitude to have to deal with as well.
  • Philippa1961
    Philippa1961 Member Posts: 38
    edited 30. Nov -1, 00:00
    You have every right to be upset and those people have no right to judge. This is a problem for arthritis sufferers as healthy people don't understand the pain that comes with it.
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
    I'm sorry to hear that people have been talking rubbish about you to management in work, I hope you're not forced to defend yourself over a few pictures etc on Facebook. There isn't no law or strings attached to your work that says you cannot have fun and try to do normal things like everyone else. A pictures only shows half the story, if only they were there to see the pain and suffering the following days from a long haul flight. And I think there isn't any comparison between a long car trip to a long flight, you're able to get up and walk around on a flight, not in a car, a car can also be bumpy and throw you around where as a plane is generally smooth and the effects of the flight on the body tend to come on after the flight.

    I think its awful that people would say those types of things to management and it is discrimination technically, but is it really worth the hassle going down that route? If I were you I'd add everyone that I work with to the limited list on Facebook so they cannot see anything on my profile that I don't share with the public. That way in future they cannot make stupid assumptions that you're able to run a marathon.
  • stickywicket
    stickywicket Member Posts: 26,707
    edited 30. Nov -1, 00:00
    Workplaces can be hives of gossip and Facebook definitely so. I don't do it and never will. No-one who doesn't have arthritis can judge what it's like but that won't stop people trying, especially in a work environment where many feel over-stretched. Be strong but also be careful who you tell what to. The internet is a very useful tool but it's all too easy to think we know people on it better than we do. Keep a few good friends in the loop. Your health is no business of anyone else.
  • Cariad71
    Cariad71 Member Posts: 99
    edited 30. Nov -1, 00:00
    Thankyou all for taking the time to reply, especially late on a Friday night!

    It makes me feel better just talking about it to people I know won't judge me and understand how ill informed people can be about arthritis.

    I now realise Facebook can be very dangerous, I've deleted all my work colleagues except a few close friends, that will probably give them something else to gossip about but I just didn't want them to be able to see my private life any more.

    thanks again xx
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    I think you have been very sensible to unfriend those people, they obviously are not friends in the real meaning of the word. I only have one contact from where I currently work as a facebook friend, but more from my previous school and I am careful about what I post. Have a good weekend , hope you are able to enjoy the weather.
  • Kittkat
    Kittkat Member Posts: 309
    edited 30. Nov -1, 00:00
    Hiya
    So sorry you are going through this, shows how ignorant people can be. Just be very careful with facebook (which I think you are being by deleting them etc.).They sound like horrible people. We understand though. I look absolutely fine and walk fast etc. don't think anyone realises I have bad arthritis.Carry on enjoying yourself as much as you can and forget about them. They obv have nothing better to do :lol:
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    You've learned a harsh lesson. Like Sticky I don't do Twitbook and never will because I like my private life to be just that, private. I also realise that my life is of little interest to others. Of course they judged - we all do whether we like it or not and I suspect that if it was someone else in your workplace who was arthritic but posting such active pictures in social media you too would be gossiping and judging - it's a human failing. DD
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    People without this illness have no idea what we go through. Having said that I very rarely post pics on fb as people are so judgemental and nit pick to the extreme. My fave pic of myself is me sitting on a stool, wearing my mini skirt and knee high boots, but nobody realises I was in so much pain and was not able to climb down off the stool. Pictures can be so misleading.

    At times our meds do work. I had a steroid injection last Summer and managed a walk through the woods, in fact I was so excited I was out in front of our group! Unfortunately we cannot have too many steroid injections.

    You'll have to make clear to work that there was major payback for each of your so-called nights/days out and they are few and far apart. As far as I am concerned it is impossible to fake such illness as GP's, Docs are well trained.

    Take care and stick to your guns. I'm sorry you work with such people but don't give them any more ammunition if possible.

    Glad you have unfriended them but as DD said it is a human failing.
    Elizabeth
  • barbara12
    barbara12 Member Posts: 21,257
    edited 30. Nov -1, 00:00
    I'm with some of the others I don't do facebook, unless my dil tags me in pictures of my GC..it is used in all sorts of ways to watch what people are up to, So sorry they are judging you like this , I do hope they will listen to your explanation wishing you well with everything xx
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Hello Cariad - love the name by the way! It means sweetheart in Welsh, doesn't it?

    The trouble with our condition is that we can and do go out but we hide away the bad parts. We are visible when we are out or at work or on holiday but they don't see us sleep all weekend to recover from the week at work or cancel the rest of our weekend plans because we went out on Friday night.

    I do have facebook but don't use it often. You can put people on restricted profiles, so if people who are not close with you and don't understand, you can limit what they can see.

    I'm sorry this has happened to you, it's been a very harsh reminder that people don't always understand and aren't always compassionate.

    We understand though and you are not alone. Chin up x
  • krisbe
    krisbe Member Posts: 95
    edited 30. Nov -1, 00:00
    Yes set up your options so only friends can see your comments and pictures etc. You have to be very careful with facebook. Even on this site people can see what you have written by searching on the internet, so be careful. Take care.
  • Cariad71
    Cariad71 Member Posts: 99
    edited 30. Nov -1, 00:00
    Thanks again to all of you for taking the time to reply, it makes me feel so much better reading your comments.

    Starburst- thankyou and yes, Cariad means love/darling/sweetheart!

    Tkachev - your example of you sitting on the stool was spot on, I suppose I didn't realise how misleading pictures can be but as my colleagues have seen me barely able to walk up and down the corridor in work and know I have regular rheum appointments and take so many drugs, I would have thought they would understand that the times I can do those things are few and far between, and I'm so excited when I can do nice things it makes me want to share it on Facebook! I hate when people use Facebook to moan and get attention in that way, which is why I never put negative things on there. Although this has made me think, perhaps next time I should put on there 'had to cancel a nice day out today as I'm in too much pain' or 'couldn't get dressed for work this morning so sat on the end of my bed crying in frustration' or 'it's killing me that I might not be able to have children because I can't stay off my meds long enough' or post a picture of me coming down the stairs on my backside?!! That seems to be what people need to see/hear in order to believe you.

    I try to hide my pain most of the time because I don't want people thinking I'm miserable, as you all know people get tired of hearing about your illness and when they casually ask 'how are you?' It's hard to know if they're genuinely enquiring about the current state of your joints or have totally forgotten there's something wrong with you and are just making small talk and only want to hear 'fine thanks!'. I usually assume the latter because it's easier and quicker :wink:

    DD you are right about human failings but I'm always very careful not to judge/gossip about people when it comes to sickness or a medical condition/disability. Perhaps this is only because I've been aware of what it's like to have one since before I ever started working. I'm also very friendly towards and respectful of all colleagues regardless of their rank or background. I make a conscious effort not to get involved in the gossip and bitching in work because I don't like it. I work in a predominantly female department which doesn't help!

    I have at least enjoyed this weekend with the lovely weather, sat in the garden while my husband (bless him) has done the shopping, cleaning and cooking. I did sleep for hours this afternoon though, like you said people in work don't see that we often have to do almost nothing on the weeks just to recover enough to work another week all over again!

    I hope you have all enjoyed the weather too xx
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    Glad you've had a good weekend, you deserve it and hopefully you are feeling ready for the start of the new week.
    Facebook is a double edged sword, I use it and its a great way of keeping in touch with relatives and friends who live abroad but I think you have to be careful about who you have as friends, especially in terms of work colleagues and also about what you post. I do post the odd negative comment, and sometimes ones along the line of good day today doing xxx, not looking forward to the payback tomorrow.
    Real friends understand what you're living with and how you manage it, the others aren't worth the worry, but I know that's easier said than done.
    Fingers crossed for you tomorrow.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    My friends do ask me occasionally how I am but I reply with the following: I'm rubbish so let's talk about something else. I too keep quiet about pain because it's always there, unrelenting, twanging away, moaning doesn't help to ease it and I don't want to become a self-pitying arthritis bore. I do let Mr DD know when things are tougher than usual so he knows to up the level of physical support with doing practical things but he's always surprised to learn that I am in pain 24/7. :lol:

    I am being good at sitting outside for ten minutes per day to help increase my Vit D levels but the heat and humidity is upsetting my PsA so life is pretty grim at the moment. :( Never mind, once the usual summer weather returns the OA can have a good go at me. :lol: DD
  • Dakky
    Dakky Member Posts: 53
    edited 30. Nov -1, 00:00
    Sorry to hear about them comments Cariad71.

    Sometimes people say things purely from a position of ignorance. Others sometimes feel a jealousy of what they perceive to be unwarranted allowances by employers (if only they knew the pain)

    Co-workers and friends will often ask how you are, but most really don't want to hear your buckling in pain all the time, so you say I'm fine. This can obviously lead to people thinking you may be getting better, or making a recovery. And as a result "he/she was fine last time I asked"

    The majority of these people don't and probably won't ever understand what you're going through. You sometimes just need to learn to separate the wheat from the chaff and try not to let it get you down.

    Wishing you the best!
  • fortuna
    fortuna Member Posts: 149
    edited 30. Nov -1, 00:00
    how about posting your first message to us on a notice board at work? You have explained everything so well - getting it off your chest. These thoughtless people should read it and feel ashamed.
    ((())) Fortuna
  • 19smp59
    19smp59 Member Posts: 105
    edited 30. Nov -1, 00:00
    Gosh, this is so awful I can't imagine how cruel some people can be. I take Tramadol to get through my day in work but I never moan and when people ask how I am I always say I'm fine. I'm in bed by 8.00 pm on work nights very often but if people ask how I am, I just say I'm fine as no-one likes a moaner. Glad to hear you have deleted these so called 'friends'. I am also very shocked at management listening to 'tittle-tattle and gossip' to be honest.
  • Philippa1961
    Philippa1961 Member Posts: 38
    edited 30. Nov -1, 00:00
    I'm very careful who I have on my friends list on Facebook due to so called friends causing trouble. Hope you're feeling better anyway.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    The way in which people use FB has completely altered the meaning of the word 'friend'. The immaturity and petulance shown in 'unfriending' someone (especially when it's someone you've never met in the first place) beggars belief. I remember replying to a newbie on Say Hello about something and receiving a PM asking me to be his 'friend'. As if - I prefer my friends to be tangible. DD
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    I am careful who I add, I don't add friends of friends who I don't know and/or like. However it does have positives, I am now back in touch with a friend from 20 years ago I had lost touch with and who now lives in America and one of my main reasons for joining, is that it's a great way of keeping in touch with family who live in Australia not just through messages but through the photos they post.
  • Cariad71
    Cariad71 Member Posts: 99
    edited 30. Nov -1, 00:00
    I agree about fb and I've certainly learned a big lesson about the dangers of social media. I also agree it looks immature to 'unfriend' someone and unfortunately, because this unfair treatment of me involves fb it makes it sound more trivial than it is.

    I'm afraid I've had an awful time in work since really. I found out it actually was senior management that had raised the issue which almost makes it worse that it wasn't just gossip! They'd recently had training about the company's policy on sickness and absence and how staff shouldn't post certain things on social media when they are off sick. I'm assuming this is why they thought they had the right to comment on my private life and make inappropriate comments that I don't appear to need adjusted duties, but the crucial difference is that I wasn't and am not off sick. It's very hard to stand up alone to a group of senior managers and although I feel very unfairly treated, I'm not sure if I can do much about it.

    Thanks again for all of your support
  • stickywicket
    stickywicket Member Posts: 26,707
    edited 30. Nov -1, 00:00
    I've had RA for much longer than you and it's a long time since I did paid work. In those days I think I'd have felt far too timid to confront anyone in management but I have learned over the years that sitting back meekly and allowing things to happen to me is rarely a good idea. I've also learned the valuable lesson 'never attribute to malice what can adequately be explained by a-word-I'm-not-allowed-to-write-on-here' :wink:

    There is a lot of genuine ignorance about arthritis. Why not print off some of Arthritis Care's info leaflets and asked to speak honestly to some of the management people about arthritis is general and your own situation in particular? It doesn't have to be confrontational. It's an opportunity for you to take charge of the situation, deal with it and maybe make life easier for any future employees as well as yourself.
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    I think Sticky's suggestion is a good one. I would also suggest that if senior manager are going to "spy" on employees in this way to try and catch people out they should make it clear that this will be done. I have to confess here to being a senior manager somI have a foot in both camps so to speak. As a senior manager I can name the members of staff I line manage who tend to pull a "sicky" every so often, such as taking the following day off sick (headache, stomach upset) if they have been on a school trip, Mondays off if they don't fancy walking up to the swimming pool etc. This is frustrating, causes problems if other cover has to be arranged, but is hard to challenge, especially when these repeat offenders refuse to attend OH appointments. I am also aware of those who have genuine health problems and/or difficult situatios at home and support these in terms of building in what flexibility I can, encouraging them to speak to the head, and generally checking in on them every so often. Unfortunately as in so much of life the few that abuse any system spoil it for others.
    Are you a member of a union or professional body as they might be able to give you some support.
    Good luck, and keep us posted
  • Cariad71
    Cariad71 Member Posts: 99
    edited 30. Nov -1, 00:00
    One minute I tell myself to forget it, it's not worth the stress and potential flare up that goes with that, but it's eating me up and stressing me out anyway, it's all I've been thinking about so it don't think I'm going to do nothing.

    I'm planning to put something in writing to explain my illness better and the impact of it on my life, and the real background to the pictures because I really want to be able to justify myself. The manager who I went to for help when my own refused to deal with the situation has suggested doing something like this but she is also trying to 'smooth things over' and encourage me to drop it. I don't feel I can say too much on here because the forum is in the public domain but I'm also seeking help from a union representative, I don't necessarily want to take it any further but I feel I need advice and to get it off my chest to someone who understands my rights, and protection in case I get any future problems like this.

    We are told we have so much protection as people with a disability, and in theory we have, but it shocks me how much discrimination still goes on. I've experienced various forms of it in the past but I didn't think it would happen in the kind of professional environment I work in now. You only have to browse at the 'working matters' forum to see how many of us this kind of thing is happening to. We really should stand strong against it, arthritis is very poorly understood.

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