I have been off the site recently as have quite a few other people.
I have looked through some posts and I feel the general anger and anxiousness in a lot of posts this past few months.
People come on here as they are worried and concerned and increasingly are asking very technical questions , about covid, vaccines and symptoms because they are worried and a lot of times now cannot or don't want to " bother" doctors at this time.
Of course, a lot of times ,we simply cant reply, as we dont know the answers but the lack of kindness and empathy I have noticed is palpable to me as a long term member .
If you get stressed from answering the same questions or posts then please dont, be kind to yourself and have a break.
Also, if I get any negative replies or "trolling" or nasty private messages in future I will simply report these replies.
I've read some angry, sarcastic replies, lots of shouty type capital letter replies. Why has this started , is it lockdown and be reassured I thought long and hard before writing this.
This is a support group for rheumatoid arthritis, I know the pandemic has made people more upset , but please remember the word "support" in your replies, I cannot believe some of the recent ones on here, often from people that do not have RA. π
If you want to troll me, go ahead, but in all honesty let's get back in track and help and support all of us who know from our own experiences about RA.
That is what we were good at. Be kind and I hope you all have a good day with little pain.
A xx
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allanah
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I am also on the nextdoor neighbour app and things have recently gone absolutely nuts there with neighbours just being extraordinarily rude... swearing at each other now, belittling, being incredibly offensive... you name it. One thread about Covid jabs now has 200 replies and it is the same 3 people going at each other. Neither willing to step back and not say anything further ... instead hammering their pointless point and in such a fashion it is extraordinary. People are losing the plot IMO across the board. As for here there are times that I read some replies and wonder ... what on earth ... have I misread that (I can be a tad over sensitive π€·π»ββοΈ)...My latest view to myself ... reply if I am in a reasonable headspace so hopefully wonβt make a mistake or upset anyone and donβt if not.
Yes, some hurtful things going on across HU and as I read posts here on this generally lovely supportive site for people with rheumatoid arthritis I felt very upset. For people new on here, I feel the pandemic has caused some strange behaviours but be reassured we are here for those who need support with RA. The point is to be kind and supportive .
For sure shouting at me wonβt help me understand any better.... just gives me a headache on top of the original issues π
I also have been irritated when βoff-comersβ have come into our forum to add their pennyβs worth to an ongoing debate and then bogging off again.... it didnβt and doesnβt help in my opinion (other opinions are, of course, available!).
The COVID vaccine Qs are repetitive and sometimes I feel weβre living in a giant hamster wheel right now. For these posts I do find that I need to remind myself what it was like at the beginning of my RA journey, the fear, the overwhelming info re meds etc, the realisation of long term illness and the lack of energy to deal with it all..... add COVID into that mix and βflaming heck!β π³ So I read and move on as Iβve nothing new to add to the support more robust members are diligently offering (π for the βworkβ you kind and caring members are doing in this area right now as I lack the vaccine knowledge and energy to, day in and day out, support others anxious about current COVID issues).
Technical medical Qs and trying not to unduly occupy medical staff time right now is commendable in my opinion (remembering that, Yes! there are other opinions out there) ..... meeting these with gentle compassion and understanding words is sometimes all thatβs needed for the poster to feel heard and less alone. Reassurance around what is happening for the poster and about actually going and getting the needed medical support goes along way in absence of hardcore medical advice! (IMO)
Well I think Iβd better stop before my essay becomes a dissertation π€«π€«
Hi Allanah, I've been absent too for quite a while and I've got to say I'm so relieved you've written this. When I popped in to look at the site last night I was really quite sad and considered leaving for good. I wondered what happened to the lovely supportive group that welcomed me back in 2011 when I joined. I may just stick around for a bit now as hopefully it was just an off day. π
Pandemics , we wont let them get to us lol, or will we. No I agree , let's get back to the original pint of NRAS hu. For all of us kind enough to post here , who have RA and personal experience that will support each other. We are a community . π
Me too Paulywoo .. still unsure if I should be here. Had three weeks away and I wasnβt verbally bashed .. just horrified to see it all. π’ I am naturally supportive so donβt want to go just as you donβt .. so stay!
Totally agree, I'm new to this site and on the whole have had nothing but lovely helpful replies, however, I have noticed a few replies to questions / advice written in capitals or with an ! after a reply, it does make you reluctant to ask a question.
I see this on work e-mails too and always feel like I'm being shouted at, I have replied to one or two of these e-mails asking why are they using ! and which they've replied and apologised π but why use it in the first place.
Heck Garnacha, Iβm guilty of using the exclamation mark, though understand now maybe unwisely in some instances. My usage is generally to add quite the opposite to a sentence, a more cheery way. Nobody has ever questioned it, & I hope the context of the sentence would show that Iβm not shouting but maybe I have unwittingly annoyed some with it, I donβt know. I shall reconsider using !
hahahaha, I think in most cases it's taken in the manner the sentence is written, but I do see some instances where it's used perhaps like - see your GP! not suggesting you did or do this just to show as an example how I personally would read this, like I'm being told off and to contact my GP, but when it's being used to say something like - been waiting months for an appointment! to me that's fine. x
Yes, exactly, I understand it in that context but I don't intentionally use it this way. Your example is one way Iβd use it, almost in exasperation, but in the context of my own experience not in a reply to someone. x
No it's taken as normal, of course but recently I brought it up as I noticed it more in passive / aggressive type posts but hey we are all, I think on the same page . X
Good. Yes, Iβve also noticed this lately, I just wish there was a little more compassion with the situation as it is. I tend to retreat when I feel dodgy as I tend to be irritable, I might be seen as shouty in a reply. You know, how you can be snappy when not too good. We're all in the same boat at the end of the day. x
I use exclamations like you in a cheery way and with humour. I am guilty of using capitals in my post the other day but it was in reference to myself saying I CAN and I WILL, but other than that to emphasise my own feelings, affirmation and determination in respect of my RA. I guess it's down to the context it may be used in or interpreted.
I suppose time to worry is when we are given different fonts to reply in...can't imagine an angry response in Lucidia handwriting, Comic Sans, Rockwell Extra bold or Wingdings xx
Still trying to work out whether this is a hidden message or simply a line of random emojis. (I resisted the urge to add an exclamation mark here). π€£
If someone types in capitals I don't hold with the reasoning that it's easier. Most keyboards capitalise the first word of a sentence after a full stop by default nowadays.
The use of caps like that is acceptable I think Pip, or italicising, emphasises words. I tend to use italics when Iβve copied text, to show they're not my words, then back to normal to add the link.
I fully agree with your comments here.We are all going through a rough time and need support and help otherwise we would not be on this site. Take care and keep well π
Couldn't have said it better myself E. I'd only add we for some reason have certain groups that have formed, somewhat excluding others from outside them. I've heard this from other members so Iβm not drawing conclusions. Some are newer members who maybe haven't understood that's not how this, our NRAS group, works. We don't exclude anyone who genuinely needs help in their RD journey (& other related conditions). It may be so on other forums but it never has here & that saddens me, like you, a long term member who has experience of our site through it's many changes. The one thing we've always been is inclusive. π«
I agree,there is no need to answer every post or to reply..this site is for support.not trolling.l know the same questions can be asked,but this is because people are new to their illness and need help/ support.Stay safe
Hi Allanah I am so glad you wrote this, because I was thinking the same thing, about how the site has changed and become more aggressive.
Iβve been in the background for awhile reading the posts, liking posts every now again and have always found this a supportive group, but in the last couple of months this hasnβt been the case. With current climate, we all are going through a trying times, so letβs all be kind to each other & treat all with the respect we all deserve!π€
It makes me sad to read that but now you are out of your lurking shadows lol (as you said last time) it will be great to have input here. Have a great day x
Good afternoon Allanah! You speak from my heart too. π Exactly why I havenβt been on here so much, as you know. π’ I did post yesterday that many people are in a panic asking re their meds/vaccine and donβt think to look/donβt research which has been frustrating for some people to see. I know they mean no harm and just come on quickly and ask .. and they didnβt scroll down and see they are one in many asking the same. Maybe they just want some exchange/conversation, too? A friendly word π I also said I couldnβt add any more info re my own med as I had posted all that I knew and made it known I wasnβt ignoring anyone if I hadnβt answered. I wasnβt here much anyhow for the past 3 weeks till yesterday. π
I have felt very disheartened re what happened recently and wanted to not be here for the past few weeks, but hope now some distance has passed by that things will be on a more pleasant path.
Yes, lockdown definitely has in general made some people snappy and abrupt as Iβm an admin/moderator on a couple of music sites and had to ask people to please be considerate. Iβm a very tolerant person so for me to get animated about something is quite rare .. unless itβs abuse/bullying/disrespect, then Iβm disgusted. There were a couple of totally disrespectful people last year but thankfully they removed themselves. I am never afraid to speak up if something feels wrong/has a bad vibe, but only to try resolve something amicably. I wonder if some people think as they canβt be seen that itβs fine to be rude as theyβll never be seen? Itβs not π
Yes, hope NRAS can help us direct people better to the answers to typical vaccine/meds questions with a pinned post. Also it would be great if things like the excellent Zoom with James Galloway on the same subject was added. Thank you so very much for that, NRAS admins as it was superb! π Saved me a call to my rheumy. No doubt helped so many others too. Sending Hugs to all. xx
Yeah , as you say we are all here for the same reasons and would not like to think some people are afraid to ask incase people are abrupt .., So π kind
Or maybe I have an elephant hide? Or worse have been responsible for writing a post that people have found negative and didnβt even realise it ....eeekπ. If so I didnβt mean it as thatβ the last thing Iβd want to do...
Haha. Thatβs what I was thinking too. Iβve never seen anything thatβs particularly shouty at all. Some people may be using voice dictation software. That can look perhaps a bit shouty as it can often be very long sentences too without much punctuation.
It all depends on the mood the reader is in too. Perception changes dependent on how someone is feeling so two people will read something completely differently and interpret it differently.
Im not sure any of us should be judge and jury though for what people put. It should be left to the admins otherwise people will be fearful of putting anything in the end and it will become a small group of people in an echo chamber.
After my recent experience I will press report instead of licking my wounds , I think a lot of people, judging by the replies on this post , will do so too x
I admit I've not seen anything but then again I've probably just scrolled over a lot of stuff. I suppose its fear in these dark days and I admit since Christmas this lockdown has been hard. I'd imagine a lot feel that its been a long wet winter and being unable to get out has been difficult and the nightly news is very depressing. I no longer watch the late news as it is on my mind at bedtime. So yes let's all be understanding of the nature of a disease which has in impacted on us our loved ones and friends. It's an emotional toll as well as a physical one so let's all pray or hope for better times, more patience and safer times ahead.
Agree totally about the news before bedtime isnβt a good idea. Could be the antibiotics Iβve been taking, but I dreamt my late Mum was preparing to give me the vaccine. π³ Mind you that would not have happened as she wasnβt too great with needles even though she would have her flu shot etc but the news weighing heavy on my mind late at night can make me have strange dreams. Iβve started to listen to soft classical piano music on my iPod in bed to go to sleep with or listen to it on the music system before I go up. I nod off sooner with music than without,
I did read a few posts related to the vaccine and I skipped many since there are a lot of different opinions. I didnβt reply any as I didnβt have the experience personally.
After reading some posts, I decided to refer to my rheumy when the time comes, at this moment I just donβt want to stress myself over it. However I think I missed those very rude posts hence not sure what had happened.
Agree that this is the RA support group, many sufferers who need help during their flare, we should focus to share our own experience to help others.
Hello Allanah, you are 100% right, we are all going through this unknown journey just now, and people being nasty to one another does not help.I thought maybe some people might have mad cow disease as wellπ.
My neighbour ( I live in a tiny hamlet in the middle of nowhere) has gone full Q Anon. Not even joking.She collared my husband over the gate and said Trump was the only person who could save us from the 'illuminati' etc etc. I then overheard her pleading with her daughter on the phone (in the garden) to listen to her...lizard people, the whole lot. She believes covid is a hoax. she even did a one-woman demonstration in town during the summer with a placard and everything.
I wonder if she knows that all this rubbish is rooted in antisemitism and white supremacy? My husband thinks that she's gone mad from isolation. She's moving abroad next week. I find it all a bit scary.
Thank you for this. I am fairly new to this site, but get daily email updates and have benefited from some great info sharing. I thought to reciprocate recently and....was the victim of a troll who left several comments on my post to members. Out of the blue and with no context of my own experience and missing the point I was making. My response? βLesson learned - Iβll never post here again.β I normally stay off social media for this reason. But, I also got mostly comments saying Iβd helped people, and I do need to remember the good that came from my own good intentions. The nice comments made my month :). And, I know the troll is famous for her sharp comments on this site. Still...I havenβt been on since and miss the good info. I may wait a bit more - I donβt need strangers to spin me up during such a tough time.
Hello Iβm back again giving you my tuppence worth, do not let them win, stay on the site all of you that is thinking of leaving or staying away for a while, you donβt let bullies or nasty people win.
It seems we are mainly in agreement , have a lovely Saturday everyone . I'm watching rugby, shame it cant be in the pub with my friends , but soon I hope π
They have been on the up havent they. When Scotland is playing we support Scotland as I was born there ( my son used to play for them ,) but as my hubby is English we support england when they play , however when its Scotland v england ..... it's all for ourselves π
Lol yes that it did although Scotland did play very well. A more interesting game to watch was the Wales v Ireland wasnβt it... Italy... what can I say π€·π»ββοΈπ
Well said Alannah. It's the reason I decided to give this site a miss for a while. It only takes one 'negative' answer to have a negative effect on the questioner. One of the reasons could be that bullies (I'll use that word for want of another) or know-alls can attract a fan base. Folk who enjoy seeing others being put down or humiliated (perhaps). Equally it could simply be thoughtlessness. A person's 'way'. I don't think that's an excuse for rude behaviour.
Oh Allanah, that's sad that some people have been posting negative messages especially privately to you, that's not on, I know alot of us are feeling anxious and sad, but your right we're here to support. I hope your Saturday goes well, I had my Vaccine yesterday so not feeling so good today, big achy but I think I've got mild symptoms so I'm lucky. Take care and look after yourself x
Hello Allanah, thank you, i am taking it a bit easier today, but keep thinking of all the things i should be doing, ha ha ha maybe I'll do a few things then sit and rest. π have a good Saturday yourself. X
Yeah had a bad time recently, lost two friends in their 30s one to a sudden heart attack on jan 1st then one a couple of weeks ago my mate who was fit but got covid , they think his wife got it working , he ventilated but didnt make it . The on line funerals are a good idea. So yes, rough few months really x so a nice day watching rugby will be good. Though I have binged watched Vikings and Brigerton π
I agree Allanah, life is challenging enough. On a positive note I received a txt yesterday and receiving the Covid vaccine tomorrow afternoon. I am on mtx and imraldi Injectionβs so hoping not to feel any side effects. Hv a lovely day everyone π
Well said AllanahI donβt post much on the site but I always read the posts and get lots of helpful info . This is what the site is for to help and assist all us fellow sufferers. Thank you to everyone who have shared their experiences and knowledge.. if I can help or answer anything then I will do otherwise I stay in the background but I still share The ups and downs with everyone. Stay safe everyone and hoorah for the vaccine . π€π€π€
That's sad; I personally haven't experienced any nastiness and have always had helpful and compassionate replies to my queries. It's early days for my 'disease' and so I can't offer much support to others as I'm still in the dark myself but try to help where I can.Can't imagine why anyone would feel the need to write an angry private message - probably best to ignore them.
This site has been a Godsend for me, I've learned more about the condition from here than I have from the medical professionals - although most have been pretty good.
Unfortunately, when bogged down in migraine mode it's difficult to engage and by the time I've recovered I've missed the opportunity to reply. I'm active on the migraine section too!
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