I work remotely (office is 150 miles away) so no one at work has seen me since I started developing RA. Recently I’ve had zoom calls with 2 different bosses to talk about work load and while the outcomes have been good, they have both made the comment ‘you look well’. While I am pleased that I don’t look how I feel, I do also feel somewhat defensive and find it difficult to know how to reply. Its probably not meant the way I hear it which is…the way you look, you can’t be that as ill as you are making out. Is this something that I just have to get used to and is it problematic in getting support? How do you respond?
‘You look well’: I work remotely (office is 150 miles... - NRAS
‘You look well’
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Gottarelax
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Happens all the time! Drives me nuts. Even friends who ‘get it’. I guess it’s meant to cheer me up. Has opposite effect….
I just say not all illnesses/conditions/disabilities (whatever word/s suits you) are visible. You might find some useful publications on NRAS website for your employer. Here you go: nras.org.uk/product/an-empl...
There’s also a booklet called ‘I want to work’. The NRAS helpline might offer you some support too.
Thank you Madmusiclover. That's the response I gave the second time.."I guess that's why it's called a hidden disability".
Get a “not all illnesses are visible” T shirt to wear for zoom calls, or a big poster!
I sometimes say it takes a lot of effort to look ok!
Ah yes, like Dolly Parton’s quip! 😂
In a word Yes! Especially if your bosses are male! But let’s face it…you wouldn’t want them to say “Boy….you look rough …now would you”?
When people say I look well…if I’m having an off day…I usually say something like “You should have seen me yesterday”
I know I bang on about it, but acceptance gets you half way to coping with RA.
You are at the beginning of your RA journey..& it’s all a bit much to take in isn’t it?
Do you really want to go into deep meaningful discussions on your health with your bosses?
No of course you don’t ….your friends will hopefully eventually “get it”….but don’t be surprised if most really don’t understand….that we can look fine…but every joint is screaming.
I think it’s doubtful employers will offer more than pleasantries because like 99% of the outside world they don’t understand the implications this disease has.
Try to concentrate on your job…getting it done so that you are comfortable…..& look good at your zoom meetings. Once you find a drug regime that suits you…things will look up…so don’t dwell on it when people say you look great- when you are feeling rubbish….most of us have been there…& the irritation that nobody understands does pass.
Just think..you could be strap hanging on a train 3 hours a days …..so look on the up side…your drugs will hopefully soon do their job…& things will start to settle down for you.
Have a restful weekend…..I hope next week things start to get better.
Oh absolutely AgedCrone! I am in a very fortunate position with work and I am grateful for my bosses being very accommodating. It just feeds an insecurity I have about taking time out for ill health (which probably goes back to being off school a lot with a different chronic illness when I was young and being constantly reminded that it was not good for my education). I think I’d only taken 2-3 days in the 5 years leading up to this.
On the flip side, my parents always look concerned and make sure I know that I’ve aged and look really haggard 🤣…maybe being told I look well isn’t so bad
I’m sure you don’t look haggard at all….put a silly grin on your face & be optimistic that things will start to look up….those drugs will kick in soon.You are keeping up WFH…so I should think your bosses are glad to still have you on the payroll.
Yes…RA is a rotten disease…but we have to try to rise above it.It’s not easy…but there are a lot worse illnesses… I had two cousins with motor neurone disease & I am so grateful that wasn’t my lot.
Anyway..I’m at the age when I accept any compliment…..even “ like your hair today luv” …..from anybody!
I reckon when I don’t even get that….then is the time to give up😂😂😂
Yes, I guess my post may sound like I come across down, but it's more finding out...getting to know what other peoples experiences are and setting my expectations appropriately. To be honest, I feel like I'm coping well mentally and have optimism that this is just the diagnostic/treatment optimisation phase and will be over one day. I do feel sorry for my husband who is picking up all the slack though. By the way, I'd say that your hair looks lovely but your image has none ...so I'll just say that you're looking cute today and blue suits you .😀
You are psychic..I have been sitting in the sun in a blue bikini! In a very secluded spot I might add, but the horse weren’t frit!But don’t mention hair…..baby fine & very high maintenance 💇!
But I don’t think you come across as down.. …just 100% normal.It’s a dreadful shock to the system to suddenly realise that you have RA…
& that it’s not just a few aches and pains a bit of cream rubbed in will fix.
But there is life after diagnosis…I would think these days, most of us get back at least 75% of life pre RA…but of course it depends on your starting point doesn’t it?
I was playing tennis three hours a day after retiring at 55.That was knocked on the head….because my, wrists, arms & shoulders were the worst affected…..but pre Covid I still had a very good quality of life.
Life. Is OK today…but I am used to travelling a lot…& so far I haven’t chanced it…& I miss it.
All I can say is listen to your rheumy, bite the bullet & give every drug a fair chance…& you’ll end up fine!
Well done you for braving the bikini! I’ve never suited one. Wow 3 hrs tennis a day. It must feel a huge loss to have to give up. I am missing long walks. I have 2 dogs which have 2 hrs walking a day and long weekend walks. I struggle with 15 min at very slow pace now. At least with treatment I would expect to get my walks back.
I do understand how you feel, I get the old ‘well you look great’ comment all the time, but I’m exhausted - the disease and the medication causes terrible fatigue.I’m 60 and still working 4 days a week and at the moment going through an acrimonious divorce which is so stressful. I never thought I’d be in this position, but what I have learnt is I have to accept what it’s going on and one day I hope it will get better.
I have a dog too, and all through this I’ve managed to walk him, even if it’s only for half an hour and I’m hobbling around with my stick - I think we just have to do the best we can, when we can - I’m sure your dogs 🐶 love you to bits no matter even if you can’t walk them for as long 💕
Good luck with everything and I hope with the right treatment you will get your va va voom back 😊
X
Sorry you’re going through so much Chocky. Everyone says avoid stress but no one goes out looking for it! The last 3 years for me have been horrendous for stress and I do wonder whether that’s triggered the disease onset…the icing on the cake!
Oh definitely stress triggers it for me. When I’ve been at my lowest ebb, lo and behold a flare will appear. I hope things aren’t too bad for you, I think once any of us find the meds that work it’s half the battle. I’ve been good on a low dose of Mthx until last year, now on high dose of Mthx plus Sulphasalazine.Take care of yourself & your lovely doggies 😊 x
Hopefully by this time next year you will have found “your” drug & will be in a much better place.I know right now you are feeling so awful you can’t imagine your joints will ever re align….or most important stop hurting…but it does happen for most of us….not necessarily 100% of the time….but enough to have a good life.
I was fortunate that I had just retired when diagnosed …..so I was really lucky never to have to juggle work with RA…..but don’t you try to be superwoman…..that is too stressful when you never know how you will feel tomorrow. If you need a week off take it…there are no medals for being stoic.
Enjoy this lovely weather whilst you can…I hope the heat doesn’t adversely affect you.
The problem we've got now is that the NHS is going to change considerably in the near future and no longer be free at the point of access. That much is very clear when reading news reports and going by my own and friends and family members NHS treatment. It's getting worse by the day and being reliant on drugs to combat illnesses is going to be difficult when people will have to start paying for them either directly or through health insurance. I've had a Doctor tell my family member not to rely on medications for arthritis as in the long term you end up needing more to counteract what you've just taken. Myself and friends and family of mine have at times had to refuse a medication or treatment suggested by idiot doctors as they didn't have a clue what they were doing. However there are good doctors out there but they're becoming more scarce on the NHS as most of the good doctors have left. The GP's are willing to ler their patients die due to undiagnosed cancers etc as they won't see them face to face.Anyone looking to get an appintment with a Consultant Doctor, good luck with that one as you will wait many months.
Eating a decent anti inflammatory diet, exercise, eliminating as much stress and making sure your body isn't lacking in daily vitamins and minerals will help your health. Only take medications if it's right for you. Everyone is different and don't blindly trust Health professionals or even charities like NRAS as some advice is good, some is bad. I follow my own path and intuition and others need to follow their own path. Thinking for yourself and doing your own research is important as well.
Also a close family member of mine has had a recent medication review which she's never had before and the pharmacist said they want to reduce her asthma medication as they're now saying she doesn't need as much and doesn't need this type of medication any longer all of a sudden. She told me does that mean she's been taking the wrong medication for many decades and they've only just noticed!? I and many others said it's definitely cutbacks on the NHS. So if anyone out there is aiming to get medication off the NHS, they may not cough up.
Thing is I was on an anti inflammatory diet and had been for several years due to other family members benefitting, when symptoms hit suddenly and aggressively. I’m a scientist though so you can be sure I’ll be active in researching my own best approach. So far no idiot doctors in my RA journey, in fact I’ve been very impressed.
I hope you get the best care. It's really good you research alot as I've met alot of people who just blindly trust whatever they're told. From what I've been told and experienced, it's a postcode lottery with NHS treatment. Me and my family are seeing lack of care and bad treatment. It will be interesting to see what will happen in the future. American companies are sniffing around the NHS and some say it might become similar to an Americans healthcare system, we'll have to wait and see.
Having lived in America and seen how their private healthcare works, I’m very much hoping it doesn’t come to that.
Have you ever asked your rheumatologist about diet? I don’t know a single one who will recommend a diet that will help RA …..except to say don’t smoke & eat something akin to a Mediterranean diet….without processed foods if possible.I’m sure if research ever shows eliminating certain foods will help RA- our Rheumatologists would be telling us about it.
Personally I did not change my diet when diagnosed,& with rheumy’s agreement continued with a glass of red wine each day……I do eat what I consider a healthy diet…but basically I eat what I like the taste of.
I cannot see how eating food you don’t enjoy can possibly help..…unless of course you have a condition that demands you eat gluten free…..why eat that way? From any GF food I have tried….it isn’t something I would choose.
I did a strict elimination diet for over a month. To my surprise, when I started to gradually reintroduce foods individually, I found that nightshades, gluten and dairy all affected my arthritis, plus some food additives. I find my RA is tons better if I avoid these foods, and constantly painful if I have them even in small amounts. Everyone's genetic makeup is different, so we all react to foods differently. I would recommend an elimination diet to find out what might be affecting a person's RA, definitely. But just cutting out one thing at a time does not work, for obvious reasons (ie something else you are eating can still be affecting you, if you have multiple intolerances).
Definitely do all you can to help yourself…but as you say everyone reacts to food or the environment differently.I spent many years when I was young having desensitising tests & injections in trials as I reacted to so many different foods ….the tests all proved inconclusive,& I didn’t develop RA until 40 years later.
Now I have the odd reaction…but nothing serious enough to take any action.
To be honest, the NHS has never been free for a wealth of conditions - I have had quite a few and in fact RA is the only one of mine ever to have been treated on the NHS and even then I had to wait six months for a first appt when I was paralysed. The shortage of money is generally because people expect so much of it without any responsibility for their own health - and given the NHS treats the worst cases and lets all others get worse before treatment, it is just spending money on the wrong people. A lot with self inflicted conditions (largely caused by obesity) ought to be told to remedy the cause. If we had an American style system, they probably would. There are better health systems, particularly in Europe, so there is no need to copy the American one. However, I suspect there is a difference in the way the population take responsibility for their health. The NHS primarily treats cancer, heart disease and joints and it is largely a case of sweet sod all for everything else. The great obese get all these conditions. I am fed up of the bombardment for cancer screening when I have never been at risk whilst conditions I do have are scoffed at as nothing.
When I lived in America, I was shocked at how poor the system was even with employment based health insurance. Back in the days when the NHS provided a doctor's appointment quite quickly people were waiting several weeks for primary care..so pretty much as it is now. The US health system does also not appear to cause people to be less obese either. Then there are those without insurance. I had a medical student friend who could not afford to have his arm looked at when he had likely broken it. No thanks to US healthcare for me! I prefer what I've heard the German system with a separate NHS tax.
My daughter lived in Germany for 5 years and was unable to pay for health insurance, so was only covered for basic care. The UK was part of Europe then , she had 111 card, but fortunately didn't have to use the health care system.Women also pay more for health insurance than men for to cover for contraception and childbirth.
Ah OK, I was led to believe that there was a 'health service tax' and that lead to better care for all. Obviously I was misinformed.
I completely agree that health conditions that could be completely avoided with a healthy lifestyle such as obesity are being treated in such large numbers on the NHS that it's certainly not helping. As other people have said to me on other comment threads, the NHS was only meant for basic care from cradle to grave not for more complex conditions and bad lifestyle choices. I have coworkers, neighbours etc who are obese because they don't exercise, drink too much alcohol, eat junk food etc. I sometimes gently suggest healthier diets or encourage them to exercise but they're just sheer lazy and gluttonous. It annoys me but there is nothing I can do about it. The NHS has helped them be this way with providing free, easy accessible healthcare for lots of health problems instead of charging them and making it more difficult so they will think twice of using the NHS. A good example of this is drunks who get into fights and end up in A and E. If it was down to me I would refuse to treat them unless it was life threatening or they paid £200 upfront and more money for every scan, treatment they're given. It would soon teach them to not take healthcare for granted. I once worked as a Carer and accompanied an elderly resident to the hospital on a Saturday night as they had a fall. The poor resident was terrified in A and E as yobs, drunks, god knows what were wandering around with police and security guards keeping them from attacking other people. It was like a war zone. It was disgusting. I've seen Americans interviewed about why they don't want a socialist healthcare service and some have argued why should their money pay for other people's healthcare. It's a fair point.
I'm not lazy or gluttonous and rarely drink. I could really be upset by your comments as they're quite mean. You dont know what your colleagues are going through either.
Tim Spector talks about this perfectly so I'm not goi to say anything further.
And no, I'm not upset as i^m happy in my own skin, but if I wasn't, I'd feel extremely hurt I think 🥰🥰 We cant expect people to be kind to us with RA whilst being mean to others 🤷♀️
I know my work colleagues alot better than you do as I work with them everyday. They have told me themselves that they drink too much alcohol, eat too much and don't exercise. They fully accept that it's their own fault they have their health problems as they know they shouldn't be doing what they're doing but they're doing it anyway. They're also middle aged so they haven't got the stupidity of youth on their side. These are facts. This is their words not mine. We all have crosses to bear including myself but I take responsibility for my own health by eating healthily, exercising regularly and only drinking alcohol in moderation. I don't feel sorry for myself and take action when I need to. I don't have sympathy for those that whine all the time. People in modern society have become in general too weak, lazy and gluttonous that is why we have alot of health problems around us. No one becomes overweight overnight.
I don't care at all if my comments are not to your liking. They are straight facts and the honest truth. I don't have time for political correctness and lies to make people feel better.
Many people have said to me why should taxpayers money fund care for drug addicts, alcoholics, obese people, heavy smokers etc when it was their own decisions that caused their health problems. And none of the above are classed as diseases, they're lifestyle choices.
I will not condone unhealthy lifestyles just to make people feel better and let them think that what they're doing is right. I've never met a very obese person yet who became overweight because they followed a healthy lifestyle. Some medications have side effects that cause them to eat more but they may become a little overweight but certainly not morbidly obese.
Ok. Crack on and be unkind. Its not my style and neither is it lifestyle choice for many many people and you're wrong, they are classified as illnesses. . That's an accepted fact. As I said, read Tim Spector and you'll hopefully change your mind.
I'll look up Tim Spector but many Doctors would disagree with you including this one here in this article.spectator.co.uk/article/obe...
Tim Spector is an expert. He launched the Zoe covid app and is an expert in RA on top of the Twins Research which is about genetics and gut microbiome.
He's often spoken about on this forum. Think he may know a little more than a random spectator article written by a Daily Mail journalist 🤷♀️
If you had bothered to research properly, he is a Doctor that is also a columnist. He is more than qualified to talk about obesity and the state of the NHS since he's worked for the NHS a long time and I've read several of his books.Here is a wiki link about him
en.m.wikipedia.org/wiki/Max...
Haha. You're a bit rude arent you. 🤷♀️ I thought I remembered you. You posted a video by an antisemite and when i pointed it out, said it was funny. AS is never ever funny and thankfully, NRAS agrees with me and removed it.
Personally, i feel you're getting your info from the wrong places and it's not serving you well.
And please dont be rude to me again
I find your replies to me smart mouthed. You don't like the fact that I speak facts and truth. It's not my problem if you are sensitive and take everything as rudeness. You haven't shown me any evidence about obesity being an illness so I called you out on it. By all means contact the censors if your feelings are hurt. Deleting these comments doesn't change facts and the truth. Modern society is being degraded because of the insanity of political correctness and promoting that unhealthy lifestyles are ok and avoiding truths as to not hurt people's feelings.
I dont feel hurt but others might. And that's not right. And that's what I said. You havent even interpreted my comment correctly which doesn't altogether surprise me. Smart mouthed perhaps. Because I am smart, proud of it and work hard at it. I deal in data and facts, not someones emotional outbursts. I hate discrimination of any kind and yes, I'm Jewish so that video was abhorrent to me.
As I suggested, read some credible information and facts rather than the rubbish you're reading now.
Hurting other people and almost being proud of it is hideous
You're gaslighting me and trying to put yourself on a pedestal. Your religion has nothing to do with this discussion about obesity. A video I posted on another comment thread has got nothing to do with this discussion. It seems you don't like what I have to say and are very determined to have me shut down at every turn. As I say if the censors take my comments down it doesn't change facts. The more you gaslight and try to make out everybody else is the problem by dredging up videos, articles that have no relevance to the current discussion, it all descends into silliness and weakens your argument. Trying to make the argument that you don't do injustice and you're making a crusade out of it is more about you than others as you think you're fighting injustice but you're being brainwashed by the mainstream media into believing that being overweight is a good thing? Isn't it cruel to lie to people to save their feelings but their health will worsen as a result of a bad lifestyle and they will suffer with more pain and health problems.
I'm not brainwashed by anyone. As for gaslighting - that's hilarious. 🤷♀️I said you posted an antisemitic video on another thread which you did. Which is why I said you're listening to the wrong people. It's not down to you to decide whether you're saving other peoples feelings or not. How do you know how someone might feel on here reading your comments? For heavens sake at least find some emotional intelligence please.
Always better to be kind. I feel sorry for your colleagues to be honest.
The video you're referring to is from the Jolly Heretic about the state of the NHS. It had nothing to do with anti semitism at all as it wasn't even discussed. I've watched lots of his videos and never found antisemitism in them. You're steering the conversation away from what it originally was, about obesity into a completely different area and accusing me of posting an antisemitic video when it was a video about the NHS. You can't dictate to others what they watch as each person watching videos will make up their own minds. It seems to me alot of narcissism is going on here and gaslighting. I'm shutting this conversation down now.
It was removed as he's a known antisemite. True, you can watch what you want. What you can't do is expect other people to when the video is presented by someone with questionable ideas. And NRAS agreed and it was removed.
It seems to me you dont know what you're talking about sadly and just want to be insulting 🤷♀️ anyway I have better things to do so wish you a good evening .
I like Tim Spector's work
I’m a fan girl 😂😂. I like that it’s all based on longitudinal studies and not waving a finger in the air.
As you say- what seems to ail the NHS ….apart from keeping the same grey suits ….are what seems a lot of GP Practices these days just failing to see patients.Post Covid they are not pulling up their socks & getting on with clearing the backlogs.
They seem to have made their own rules,& as they are self employed they are doing just what they think they will…& no one can force them to do better.
Very few GPs today seem to be in General Practice from choice….but because it’s a nice little earner…with seemingly being able to choose when to work.
A GP actually diagnosing anything theses days seems very rare…they just pack patients off…to wait months to see a consultant.
I was with a practice that started off with 8 full time committed doctors…over the years it became 2 full time & 4 young women doctors who worked part time, seemed to rotate their maternity leave, ….then leave.
Hospital care seems as good as is possible in the circumstances.
Of course Covid has to take a lot of the blame there.
But as I think we all agree….that unless the amount we the public contribute increases substantially year on year….by NI contributions or some other way…..things can only muddle along & we must instigate far more training in every medical speciality.
But your statement that a doctor said with RA we all “need more & more drugs” is not necessarily true……after 20+ years I am down to just one drug…..& the most I have ever taken at one time is three….& that not for long. A lot of people with RA have other conditions that require medication so that may be why they take more than one drug.
If we are not to trust health professionals….what is it thought we should do? Listen to the old wives tales?
A lot of failing to recover….is caused not by over prescribing, but by not bothering to take the drugs that are prescribed, but not telling the prescribing physician you have stopped….so the doc then thinks A has not worked so prescribes B unnecessarily. The patient has to play the game…not mess about with the meds he is prescribed.
Also your relative with asthma…it doesn’t necessarily mean she has taken the wrong medication for years….maybe new medication has appeared & will suit her condition better? Or even that her condition has changed? But at least she is on the right stuff now.
This having blasted RA with all its problems associated with us can bring us down but hey you’re now a warrior & remember to sparkle on don't despair it gets to us all .. at some point or another ! We rose like a Pheonix.. joint flaring with what feels like burning joints amidst the embers we glow we rise .. even if it’s just to get up & pee we are warriors who gain strength despite having legs & bones that ache , walking found stiff & we wobble & resemble a bambi or someone on stilts . But we get up regardless & our obstacles might be many but we fight to wobble another day 💖 & sparkle on with a few rants in between .
🥂Here's to sparkling 😀
I read you are into science me too
Do you work in science - what's your area?
They probably don’t mean anything in particular - especially if they are male! I used to have a very bitchy neighbour who said that sort of thing and she clearly didn’t think there was anything wrong with me - I was on my knees with Graves’ disease at the time. Then when I developed inflammatory arthritis and went totally gluten free you would have thought I did it to annoy her, she used to produce something GF when she entertained but it was done with such bad grace she would have been better not to bother. I’m really not sure men have that level guile - sorry if that offends any men in the group.
Just say you’re thankful you don’t look as bad as your body feels, that you’ve made an effort for them and you’re glad they noticed.
On the other hand if you felt like being a bit naughty and having a bit of fun at their expense a bit of creative make up could stop them in their tracks. You know bags under your eyes etc.
Oh I’m sure that they didn’t intend anything mean (yes male). It really is just me worrying that if I look well will they will think I’m making a fuss about a few aches and pains. But I’d rather look well than not!
Five and a bit years on I still have difficulty in dealing with the you look so good comments, as I feel rough most days and just awful other days.It really does not help to be told how well you look when you are in pain and unwell. I do have to remind myself that people are not being judgemental, but sometimes I do wonder.
I've tried all the, looks can be deceiving, hidden illness stuff....it makes no difference....the comments keep coming.
NRAS should be able to help with educating your employer.
Best wishes.
Wait another xx years Mmrr…& you won’t give a toss what other people think.Those that don’t empathise don’t matter…those who do are gold.
Like the man who cleaned my kitchen floor on Wednesday night and put the three bloody mats outside..& all the gory kitchen paper in the bin.
I have only known him& his wife since I have lived here…11 months , …but they really pulled out all the stops to help me…when I managed to impale my foot on a knife. They do know I have RA….& behave kindly when I have an off day.
There are people who care, but as I say….those who don’t put it down to them lacking…not you.
Thanks AC. I've never cared less what people think about me, I never really have.
But the comments on how well you look, when you are really struggling and people know you are struggling, are crass as far as I'm concerned.
Better to ask how are you?
Rather than tell people how they are.
If someone says... I'm ok thank you....I'm not too bad, I'm having a good spell....it can be followed up with...you are looking well...
I usually get that when I've lost weight. Once a client at work took me aside and asked if I was okay first, because she didn't want to say I looked well if my weight loss was due to illness. I must say it was a refreshing display of sensitivity but I had actually been working hard to lose weight! But it's true that how we look means nothing and if only more people were that thoughtful before they spoke.
I think the phrase , "you look well" has a life of its own and is just trotted out in an embarrassed rush when people don't quite know what to say . It's polite , friendly but meaningless . I know I've done it myself in the past .
On one cringing occasion when the person I said it to , who I hadn't seen for some time , was terminally ill and looked it . I was so shocked by their appearance the words just came out . They died shortly afterwards and I've never forgotten or forgiven myself . I think it's just some innate human need to be kind .
I've had it said to me , often . And to be fair if I'm sitting down , doing nothing , I do look well . It's if I try to turn round , get up , and attempt to put one foot in front of the other , without falling over , for the first few steps . Then it becomes apparent that perhaps all is not well .
Don’t be hard on yourself, we all have said things we regret and perhaps the person was relieved to find someone treating them ‘normally’. I’m just like you. If I’m sitting down, you wouldn’t really notice, it’s when it takes me 3-4 attempts to get to standing, when I move wrongly and crumple in pain or have to pick some thing up that’s a reach that it becomes more obvious…However, I was surprised that in the first weeks of symptoms when I went down to head office for meetings for a few days no one noticed. It was while there that I realised this wasn’t just sleeping in an odd position. Suddenly I really struggled to dress. Rising from a chair was slow and painful. I had to hold the chair and stand for a while before attempting to walk and the first steps unsteady with a shuffling gait. I was sure it would have been noticed that I wasn’t my usual active self. When a couple of weeks later I let them know how things were, they were surprised that anything was wrong…so I guess even when it seems obvious to us we manage to hide the extent of our condition.
After over 30 years of RA , I still try to hide how this disease affects me . If I'm waiting for an appointment, be it doctors , dentists , hospital etc . I try to gauge when my time is up and I stand up , rather than wait to be called and have the embarrassment of hauling myself up , which to my mind takes for ever , keeping the other person waiting .
Crazy really because they all know of my condition and at 80 I guess I'm allowed a little "old lady" latitude . But still I try to present some sprightly alter ego .
🙄
You look well isn't a phrase I would normally use, but when my step father was in the final stages of COAD my mother called in distress one morning saying he was very ill.
I was a lecturer, I cut short my morning and had to cancel afternoon classes.....drove the 2 hours to my mums...entered the house and there was my step father sitting up in his chair, with his oxygen on 'looking well' which I then proceeded to blurt out how well he looked..... out in relief and to be honest frustration too. The normally peaceful man blurted out 'I might look well....but I'm not ' he had been given a big bolus of steroids and was in a steroid flush. I felt awful, I still remember how insensitive I was. But I guess we all do things like that when under pressure. I was very careful thereafter not to comment on his appearance.
After I drove down in an 'emergency' situation twice to find him 'ok' when I got there I had to say no to further expectations from my mum.
(The phone call from my mum was the beginning of a pattern, if my step father was having a poor morning she would ring me, expect me to cancel classes and drive down mid week, when I visited most Sundays anyway. The expectation wasn't sustainable that I could cancel classes on a routine basis ...2/3 times or more per month and take the day off).
For me it is the repeated how well you look, often by the same person everytime they see you....the unthinking comments that get to me. No need to comment on appearance, of anyone, general chit chat is fine.
I like your comment that you look well, has a life of it's own.
I did the opposite saw a friend and I thought she looked awful. I rushed over saying oh my gosh what’s happened. I thought she looked haggard but apparently taken up body building and she thought she was looking hot!
Hah ! That’s so funny 😆. You just can’t win , can you ?
They call it the hidden illness and boy is that right! I was 51 and working mostly full time but as the years went on with 'some' not-so-understanding bosses and the tiredness I changed within the eleven years, even with an excellent drug to part-time. Good luck with gently repeating this, of course, is called 'The hidden illness'.
I’m not irate, more concerned that when I need accommodations at work or healthcare providers be dismissive because I look fine. I’m happy to look well and certainly don’t want to wear RA like a badge looking for sympathy. I hope I’m at my worst at the moment, being untreated, and if I look well now, hopefully, I’ll look positively glowing when I’m treated 😀
One response to 'you look well' could be to reply with 'don't judge a book by its cover'.You may then get an enquiry from those who are sensitive and/or curious.
You can then tell them your condition.
If not wanting a conversation tell em to Google RA for insight if interested!
I'm always happy when someone says I look well. Good I think and thank you.
I don't see anything wrong with it. I don't expect anyone to know how I'm feeling if I don't tell them. So looking well is good ❣❣
Don't get me wrong, I'm happy for people to say I look well on a day to day basis - my concern was in the context of asking for work accommodations and the worry that by looking well I may not be given the same as if I'd looked as ill as I feel. When I'm in meetings that are not about my health/work situations I'll answer the 'how are you' with I'm doing OK or fine and would hope that my looks didn't betray the lie.
I'm perennially Pollyanna like I think 🙂 It's hard isnt it to know when to say, I feel terrible. Even if someone listens which I sometimes doubt.
I worked very hard with RA for almost 10 years for the NHS. When I could take it no longer and my work began to suffer my bosses wanted to put me on a bank contract which would have meant I was still employed with them for the job I absolutely loved but would have to wait for the phone to ring if they needed me. Which to be honest was a real smack in the mouth. So although it was very difficult for me to bite the bullet and finally recognise that they were right I wasn’t able to do the job any more and was basically living on painkillers and spending all my time in bed when not at work that I realised I had to take I’ll health retirement. This included a tribunal which I attended and I wished to god I hadn’t because I felt that my hard work dedication and always going the extra mile meant nothing and the bosses didn’t give a damn it’s as though they didn’t know me at all and it broke my heart. So I get that the comment of you look well by your bosses would give you a feeling of having to defend yourself because in my opinion they don’t see what’s right in front of their noses until you’re struggling and it impacts them.
I'm so sorry Leics that you had to go through that with work. You would expect to find understanding in the NHS. That approach by the management to their own staff does not bode well for their attitude towards the people that they are supposed serve. Also it makes me think as a patient that when interacting with the nursing staff that they may be going though struggles that are no less difficult than my own.
You’re quite right however I’m feeling I always ask after the person who’s treating me even if it’s a hello pleased to meet you, are you well ? Unfortunately the managers I worked with were only interested in their massive pay packet and making sure the work was done and cracking the whip. I quite often used to say to them ok first praise us for going the extra mile and clearing the backlog usually when the computers went down, then give us a telling off for whatever it was we did wrong haha. Carrot and stick scenario. I may have been towards the bottom of the pile pay grade wise but part of the thing I loved about my job was thinking do you know what I may have saved someone’s life today and no one can ever not enjoy that sense of satisfaction that’s why I loved it. Patient first in my book always, because I know what it’s like. I worked in pathology lab by the way. Loved it still miss it but not the red tape and politics.
I started training for Path lab (MLSO) but the way the staff were treated at the hospital that I did rotation in really put me off so I switched to a biology degree.
I was only a BMA but I took great pride in doing my job to the best of my ability. Not everyone was of the same ilk but I worked with some really wonderful people who I still consider my friends and see once in a while. So I suppose in my mind I lost not only my job but my sense of making a difference to others. Hey ho can’t be helped. I’m better for not struggling everyday and being on my knees all the time. Just a pity the RA in itself hasn’t improved much but at least I can pace myself but I’m not very good at it haha.
Hi Gottarelax I greatly sympathies with you. I have the same problem suffering with RA also PF & emphysema, I might have been in doors for 2-3 days feeling absolutely at deaths door ether with pain or struggling with breathing. Go out to do necessary food shopping bump into people that haven’t seen for a while & get “ my you look well “ & inside your struggling so I just smile & say thank you & change the conversation. Whether it’s a vocal reflex by people when seeing somebody giving a friendly greeting to open a conversation after hello I don’t know but it does hurt.
Whiskers.
Whiskers, you make my RA seem like a walk (or shuffle 🤣) in the park. I'm sorry you're suffering so much.
When anyone says I look well I just say thank you! It makes me feel better. xx
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