Hi everyone! I wonder if someone else feels/felt this way. The thing is that since I´ve been diagnosed with RA I´m feeling a lot of pressure both from friends and from colleagues at work ... plus my own stubbornness to fight the disease, it´s a difficult cocktail. I know it might only be their concern and get well wishes, or their understandable lack of knowledge about the RA, but it seems that if one day I have less pain than the previous day they expect me to be cured... so when the following day I don´t sleep or I´m again in pain at 90 % level they look at me as if I´m lying or exaggerating... I don´t even want to think what will happen when the treatment starts working :S
I´m not sure if it´s really like this or is it just my disturbed psychology at this moment... How do you cope with this?
Thanks, and a painless Sunday to all!
Written by
cpetry
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I do know what you mean, some people think if you do more exercise or eat a better diet then you will be fine 😱 other people tell you to get out more as its all in you mind . It is ignorance of the condition and lack of understanding. Would it to leave a leaflet about your condition in work ? Best wishes 🌸🌸🌸
Kindly sharing "The Spoon Theory" 🥄 ( healthunlocked.com/nras/pos... ) may help them better understand (& may help alleviate social pressure you’re feeling), cpetry? 🤔
I work with wonderful colleagues, and have some great friends, but I’ve learnt that the vast majority of people simply don’t comprehend what a chronic illness is all about. Rightly or wrongly, I’ve found it best to just try and keep quiet about it..... not always easy!
Agreed, majority don’t (can’t) comprehend it because they’ve never been exposed to such health ‘fluctuations’.
One day debilitated, another day ‘up & about’! 😳 🙃
Tis indeed truly ‘bizarre’ 🤨 to uninformed onlookers. 🤯
Sometimes "Spoon Theory" 🥄 ( healthunlocked.com/nras/pos... ) gets through to folks genuinely interested in trying to understand the nature of such illness. 😌 🙏 🍀 🌺 🌞
I understand how you feel at times I feel like this too.
It's a poorly understood disease and I think most of us find that frustrating: still get rolled eyes as they think it's a touch of arthritis. It's all in the stupid name really. I tend not to talk about it much now, apart from on here! 😄 that usually rrsults in everyone thinking you're fine too, can't win lol x
What makes me laugh is when you try to explain it and they say, i my knees a wee bit sore or my elbows aching a wee bit, if only they knew the full extent of this illness, I've gave up explaining to people that's why this forum is a godsend
I work surrounded by individuals in the health & social care profession. I would say they have all had dealings with people like us (with long term conditions) at some point in there extensive careers, and yet there are the odd few who are still not caring or compassionate to those with fluctuating conditions. So if health care professionals can be unforgiving, what’s left for the rest of population.
Not a lot! Even if you try to educate someone with a brief explanation, (and it has to brief..very brief!) about a chronic pain condition such as RA, they will more often than not, try to change the subject within the first 10-15 seconds, start fiddling with their mobile phone, or..worst of the lot..abruptly cut you off mid sentence and spend the next 10 minutes rabbiting on about their sore thumb...............................
I totally agree with you. I work in the health care system as a registered nurse. I'm sure my colleagues don't understand this illness. In the past I gave out the NRAS card but it's not acknowledged.
I also very recently been diagnosed with bronchiectasis. Another LTC but this is never mentioned at any reviews I attend.
I have cylindrical bronchectastasis too, (auto immune) but to be honest apart from being on permanant antibiotics its made little difference to my life. I think that illness is subjective and I don't want people to make any allowances for me. Because I'm in remission and lead a normal life. I don't know how someone with cancer feels so is all anyone can do is just be kind to each other regardless of illness.
Hi, I know what you mean, it’s a roller coaster majority of people have no idea what RA is about, I have given up trying to explain, a lot of people say oh yes my Granny had it, when they obviously mean she had arthritis, but not RA. My family are very understanding, the only thing to do is talk about it to other sufferers who totally get it. Good luck with it all.
I have stopped caring what people think of me know.At our local the people lets say our crowd like to sit at the bar on high stools which i cant get up on and if i get up with help i cant get down so sit there bursting for loo so i cant be bothered anymore so probably think i am antisocial but i just cant be bothered anymore
Hi cpetry I feel the same I try not to take any notice I just get on with my life Ignore these people someone told me a couple of weeks ago that I was lazy as I told them I if I got down I the floor to do yoga I would not be able to meet up so just ignore these people
In the early days I told people I had RD. The wall of ignorance fell on me crushing any hope of at least some understanding. Comments about addressing my diet etc at first irritated but now enrage me. As if my choice of diet, lifestyle, whatever was to blame and the implication that i'm doing penance for past misdeeds has me practically apoplectic. I can't be bothered to try to explain anymore. This is me now so get used to it. Sorry. Rant over
Dear cpetry I just know how you feel the ups and downs of ra are exhausting and frustrating would love to know the answer. Sometimes wonder how much is ra and how much is down to the drugs suppose a combination of both! Keep smiling everyone.
People truly don’t get it. “Oh yes, I have arthritis too—-see my pinky won’t bend all the way?” they say. Their ignorance combined with my prideful refusal to ask for help of any kind has made for a terrible existance since diagnosis. I refuse social invitations that rarely come anymore and I just don’t even try to talk to people about it unless they have it too. It has made life easier, though not fun.
I find that by saying I have an auto immune disease that is painful and the drugs are low dose chemotherapy people grasp the implications better. Not saying that it's a good thing to suggest it is cancer related, but it does lessen the idiotic remarks about diet and exercise.
Oh yes yes it is very difficult but just remember your important and you just take one day at a time and all these lovely people on here as backup you'll be fine takecare and good luck 😘
Yes cpetry you hit the nail on the head we live in a stupid dim witted society we have pain no one can see unless you have twisted joints swollen fingers which you can see. Don't know what we can do unless we put HUGE posters up we have an auto immune disease which is incurable but can be helped with correct medication and pain relief, and peoples understanding 😐
Hi, I know what you mean, I think it’s such a hard disease for folk to understand as you can’t see anything wrong. Also it’s not really a disease you can fight, you have to find ways to live with it and if that means taking rests when you need to well that’s fine.
I don’t tell people only my inner circle as I can’t be bothered with the rolling eyes ,sarcastic comments, luckily I have a wonderful husband and understanding sister , I tend not to talk about it outside the house x
I know what you mean. In my long suffering from the same illness I have realised that most people don't understand anything they have not experienced, especially pain. Do the best you can on a daily basis and ignore the ignorant. Keep a positive attitude and smile for yourself not for others, there is not much empathy in this old world and, in the end, we cannot receive what others just don't have to give.
I echo a lot of perspectives here. I also carry a a sunflower lanyard and decide when I want to wear it, if I’m travelling etc and it’s up to the individual to choose to educate themselves on what it means.
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How do you tell the difference between the pain from RA joint damage and the pain from RA being active/having a flare?
Right you lot its like this..............
Life of Brian
