A Fib, stress and personalities: May I be... - AF Association

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A Fib, stress and personalities

May I be bold enough to share my old retired nurse perspective about peoples responses, perceived rudeness, etc.? I know the job of administrators on these sites is to remove inappropriate people, posts, etc. That is no easy task. Sometimes there are borderline blunt responses that might offend some. Ive learned over the years to ignore most as we dont know the health condition( mental or physical) of the writer. People are not at their best if the are ill or stressed. If someone has had a stroke or “ mini strokes”... it depends on what part of the brain is affected. Sometimes the personality is affected, sometimes people lose their filter. I think it’s safe to say everyone here has been impacted by AFib and our lives have changed in ways we didnt ask for. I love this group. I feel welcome, accepted and I think it is so cool that people of different ages, cultures, etc can come together like this. 💜💜💜

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Thankfully Hoski we have few problems here although there can be contentious issues which promote polarised views. As I pointed out in an earlier post on trolling , there is a "report" function under each post if people are offended by something but as you say people do not always respond in a logical way.

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Bob, I just want to take this opportunity to say that from what I've observed your behaviour on here has always been exemplary. Thank you for everything 😊

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I second that re BobD HIlly.

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Me too.

I was on another site for a different health issue and after 3 days I left the group. I couldn’t believe how rude people were to one another. It was like open house to have a pop at someone, but it was constant, Hence the need to leave.

I think it’s about 3 years I’ve been with this group and only ever seen I comment that I thought was uncalled for.

This group has helped me so much over this time... even going in for the ablation I didn’t stress and took it all in my stride. Best was the advice for after care ... I did as I was told by you lot 😘😘 and did absolutely nothing for two weeks..... we’ll i live in a forth floor flat with no lift 😂😂😂

All joking aside I love this group and thank you all for being here xxx

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Here here

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Hi Hoski : -) very true . I said pretty much the same thing in a thread the other day but the thread disappeared .

If someone disagrees with me that's fine too, everyone is entitled to an opinion and we learn by considering different points of veiw.

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Yep

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I think [some] people miss the point that most on here are everyday people and not professionals in the medical field. We share personal experiences, even daring to say that a certain given medication has not affected them the same way that it has affected another. It is an exchange of ideas, views and information. To come on here and not be receptive to the opinions/ideas/facts from others is pointless, you then have to ask as to why one is on here if that is the case. Unfortunately what you/I are writing will not always come across as one would wish and can be misconstrued because the vocal tone is missing, in turn giving a different slant.

I think that if you/I take the time to read a persons post in depth, (literally word for word/line for line), you might see that person in a different light ie problems that do not always belong on this forum ! There is one at the moment that could be taken apart line for line, being very self indulgent and contradictory. Imo it belongs on another forum and I will leave you to work it out!

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Hi, John, you say....

''you then have to ask as to why one is on here''

I think some people post on here for assurance and support , they don't really want their opinions /decisions questioned and consider that an affront.

I posted on here originally as a scared new AF 'sufferer' not just for support but to learn all I could about AF from those with the most experience, Afers themselves. Now I post to support others and to pass on my own experiences in the hope it might be of use to others. I am happy to question and be questioned in order to increase our understanding of AF.

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Me too

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"you then have to ask as to why one is on here''

If one is not prepared to learn, then I refer to the above.

As much as I like the people on here, I would not have come here if I had the answers. The point that I am trying to make is that you can only convey your own knowledge/experience. For someone to then say "I am offended Or not interested" is downright rude/ignorant in many respects - live/learn/take on info and then do your/my perceived best move.

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John I agree... :-)

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I was thinking along similar lines this morning as I fought with my monster bindweed (plenty of time to think). I don't think it is reasonable to come on a forum and expect the members to be trained counsellors/saints. I noticed when I was writing a PM that there is notice below that says advice should be given on the open forum 'so it can be challenged or corrected'. A forum is 'a place to exchange views or ideas'.

It is obvious that some members have mental health/personality issues as well as the inevitable anxiety. Some responders are extraordinarily kind and patient, some are jokey and a few are plain irascible. Humans act human and it isn't reasonable to expect anything else.

Let's keep on keeping on 💓

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Amen! I love your motto “Humans act human”... that says it all💜

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True Hoski - the marvellous advice, help and support of people on this forum certainly helped me to get things back into perspective.

Conflict is stressful to those involved and to observers and unfortunately the written word gives no latitude for nuance nor allow body language or facial expression to temper words.

The massive thread from yesterday shows how inclusive and widespread our community is - most impressive.

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Yes, very impressive to me as well.

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Hoski, you have beaten me to it with your wise post, but yours is probably more thought provoking and sensible than the one I was going to write. So thank you for that.

This forum has changed so much with the influx of new members, we certainly never used to have open bickering on the forum, or a country claiming to be superior to others (I see that post appears to have disappeared). I really hope the people doing this do not put new members off joining. We must be welcoming, kind and considerate to all who come here for support. Then occasionally, we must just ignore or answer briefly some responses we receive that could promote disharmony.

I guess this post may be deleted very soon, as it only highlights that there has been a little unrest here.

Jean

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I agree 100%. It is totally fine to not respond. A fire will die without oxygen. My TV mentor Dr Phil always asks “ Do you want to be right or do you want to be happy?” I hate pissing contests when it comes to politics or who has the best healthcare.

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Jean, I take on board your comments! Having said that the antagonism is bound to come from the person concerned when you read (on their own admission) how many people that person has fallen out with, (count them up), then add the members/admin on this forum to it = lots! I honestly do not believe that the forum is any less friendly than it has ever been - it is coming from the person concerned, unfortunately, the person just does not recognise it.

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I missed the whole thing so your comments are making me curious but no, I shouldn't want to know......

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Hmm, you know what "Curiousity" did........the RSPCA will be after you 😁

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😸

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You are so right here Jean. I don't like the way this forum has changed so I now mainly lurk. ( previously Yatsura )

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Glad to see you're here again. x

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We've missed you. x

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Hei! We miss you.

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Hi Jalia (used to be Yatsura!) - lovely to hear from you again! x

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Miss you!

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John :-) again I have to agree with you when you say ..

''I honestly do not believe that the forum is any less friendly than it has ever been ''

I don't think it is any less friendly ok we occasionally get people making ripples because in some way they feel they haven't recived that which they thought they were looking for but all things pass as they say as we settle back into calm .

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Certainly a thought provoking post Hoski, your second one of the day!! As much as I might try, it is difficult for me to add anything constructive to what has already been said.

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Im on a roll today I guess

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I think everyone is very helpful and welcoming on here and at times have given me invaluable support xx

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Thats how I feel too.

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I discovered this forum in my darkest hour when first diagnosed with AF three years ago. I have had some wonderful advice from fellow sufferers which has helped me tremendously. Whenever I meet new Afibbers I tell them about this forum because other people's experiences may help them. The mix of humour, straight talking and personal experiences makes this my go to site.

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I totally agree with you.

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What would we all do without each other (&especially Bob D)!

Touch wood, I’m so well now that I probably don’t need to be here so often, but continue to read most days and post when I think it may be useful to others, or ask a question when something new or different crops up.

I guess having thought on initial diagnosis, like many others, that this nasty AF blighter was going to see me off & now I know from all of you guys that, as long as I make the required lifestyle changes, I’ll be here for years to come. Thank you all.

We mustn’t allow ourselves to be put off by those with their own particular take on this which leaves no room for the views of others. As Bob D might agree, they will soon work their way out of this particular system & disappear up their own exhaust pipe🏎

Thanks to Hoski for the wise words.

Pat x

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But any responder can be swept away by too many careless, patronising or critical words. Even if something is subsequently edited out and replaced the initial impact doesn't disappear.

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Hello Ytarnt :-) we don't have to accept 'careless patronising or critical words' (which may actually make a valid point) we can read them quickly and move on if we so choose. They are outnumbered by words written with more care.

One member here who tends to give quite terse replies made some suggestions to me which have been invaluable. I am so glad I heeded their words and wasn't put off by a style of writing .

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The truer the comment, Doodle, the harder it is to move on.

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😂😂👍

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Agreed 🤗

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Very considered and sensible way of looking at things. I’m fairly new on here, so hadn’t before come across the rather out-of-place comments that suddenly emerged yesterday in a lovely thread from all over the world. I dip in and out for support and info and occasionally post if I feel it would be helpful. Most comments are really lovely and kind with respectful differences of opinion and viewpoints. 😃

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I think problems can arise from the fact that health advice is just not totally neutral and often not scientific . Especially these days when there can be hidden agendas behind what purports to be scientific. So people write posts giving advice which sometimes repeat what have become popular mantras . I find this annoying and often tend to reply in an acerbic manner . On the whole I think people are helpful here and compassionate and I am certainly grateful to those who related their experiences with Nebivolol as an alternative to Bisoproplol. Changing meds has made a big difference to how I feel and without this forum I might never have been aware of the option.

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Same with me Auriculaire - advice on Nebivolol from other posters has meant a massive improvement in my quality of life.

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I do so agree with you Finvola as your advice on Nebivolol was my saviour too. I am so much more like my old self since i followed it over a year ago. This site has been so useful and friendly to me over the years that have passed that I wouldn't be without it.😍

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I was glad to read this post, Hoski.

I have recently avoided posting comments for the precise reason of not wanting to offend. I joined the forum to learn from who I consider to be the "experts", ie. those with the diagnosis of AF. Only those living with the condition long-term truly understand how it can limit everyday living. I work in Cardiology professionally but honestly believe that, by listening to patients, I will be better able to support them. Any comments I have previously made have been with the intention to reassure and are taken from my own experience.

Thank you :-)

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This post only arose because of a person who needed help! I say "needed help", my reasoning being; if you do not - then why are you here? The poster posted her thoughts and opinions and was given advice, she then went on to accuse (those who would help) of basically questioning her intelligence/her ability to work things out/analysing her and so on. My own thoughts for what they are worth is that she has far deep seated problems than this forum can offer help for.

There is nothing whatsoever wrong with the people on here that cannot be dealt with anything more than a rap on the nuckles - and that is a rarity. I would say to anyone - post your thoughts/queries, you will not offend unless the language is a bit testy😀

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Maybe you mistook someone who wanted attention and validation for someone who wanted a dialogue. I try to avoid replying to needy people because it so often goes horribly wrong. I get it wrong quite often, it has only taken me about 20 years to work out that when my daughter phones for advice she doesn't really want it and won't take it and has already made up her mind to do something else entirely 🙄 When I argued with my mother it would usually end with her saying 'Oh, have it your own way' which was incredibly annoying but certainly ended the argument. Perhaps we should let some people 'have it their own way', I shall make a note to myself to do that in future 🤗

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I like your reply, it made me smile as I have a daughter who has asked advice and then.......done it her own way on more than an occasion or two.😁

Back to the topic; I spoke once in depth and a second time basically saying her reply was disappointing, others weren't so lucky. Tbh I don't think you are too far off saying that she wanted attention! Unfortunately, we are used to Afibbers needing knowledge/advice - she imo called the wrong department, hardly our fault.

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Wise words Hoski 😊

Messaging can be a useful tool for breaking an unpleasant thread. In future, if I think someone is being unkind to someone else I'm going to send them a personal message. That way it saves their face, especially important if the person posting hasn't realised that their words might hurt.

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Rather than get involved if someone is being nasty to another forum member I think it would be better to click on the more box at the base of their message and report them. Let the experts sort them out.

Everyone has different ways of saying things and I think we just have to accept that. Who are we to judge others and tell them that their way is wrong?

Men are more direct, informative and spot on with their answers. They find the solution to what you're asking and then tell you straight, thinking that will be the persons problem sorted.

Women do the same, sometimes they may not always have the in depth facts, like the men, but will show more empathy and understanding and cater more to the emotional side of the person and how they may be feeling. We may give more reassurances than our opposite sex. I think men are often more direct with their answers and should not be criticised for behaving naturally.

N didn't want personal support, given as advice from people here telling her what to do, or to be judged in any way and when she tried to explain this, the men all offered her solutions. Oh dear they weren't listening.

Jean

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That made me smile Jean. You have a point - I’ve never pressed the ‘report’ button but maybe we should make use of it more.

I was thinking that occasionally (fortunately very occasionally) there are times when it might be preferable to write what we have to say on a one-to-one rather than disagree with that person in a post, which often drags others in.

I have developed a slight phobia of posting my views for reasons others have mentioned.

Thank you for replying Jean, you make a lot of interesting and true points xx

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I think part of her problem (and I mean only a part) was that she was of the opinion that no one "Got her" Or as we say "Understood her"! The one person that did, was blown out for intellectual superiority - there was no winning. Communication is imo also an important tool in the bag, on that one she failed as very few "got her", more importantly she did not want to listen even though she never had the answers. All in all quite a sad situation.

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Good morning John. It is sad - throughout this whole sorry event I've felt sad for so many people. But at the same time I can't forget what a lovely, kind, helpful person she'd been on here. I suppose sometimes we just have to accept that people react the way they do for reasons we don't understand. Duw bendithia my friend x

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What you are describing is what is expected of men and women but we don't all conform to that. If I left and came back as Fred it might take you some time to realise I'm Frederica. I look forward to the day when we can simply be people. (Climbing off hobby horse quick before I get up to speed......)

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Good points!

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I'd like to think I'm one of the "jokey ones" that can have a bit of a laugh but still be serious when called for.

I've always used humour to diffuse difficult situations or tension otherwise I'd go crazy. But that doesn't mean I'm dismissive, casual or uncaring. It's worked for me in my professional and personal lives when called for.

As for the forum, I've needed it when I've been scared, depressed, feeling well or needing advice. And I'm sure I'm not alone. The trouble with words on a screen is they are just that, and very easy to misinterpret.

I don't genuinely think anyone here can harbour any ill will against someone else for a) seeking help b) giving help regardless of how something is phrased.

Peace and love everyone

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I totally agree. Im a jokey one too, I think we healthcare workers have learned that as a coping tool. Ive often wondered it I would make it as a comedian, lol

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I think my jokes are too "dad joke" to be funny :(

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Mine have become a little bolder with age, depends on my “ audience”, lol

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did you know the Norwegian navy have started putting bar-codes on the hulls of their ships?

So when they return to port the admirals can Scandinavian.

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Boom boom!

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Thats funny

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A spellchecker mistake there......you said "dad jokes", obviously you meant "bad jokes", sorry to pick you up on your misspelling 😂

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Is it weird to reply to my own post? In reading all the responses and the funny responses to my volcano post... Ive come to the welcome conclusion that

1. This is a very serious forum with life threatening, stressful situations we try to be helpful with

2. We all need a “ play day” aka occaisional silly/ funny posts which are nice breaks from the heart aches( no pun intended) that life leaves on our door steps.

3. You guys warm my heart, challenge me to think and ponder, renew my faith that I have fellow brothers and sisters across this world who care. People I will never meet( in this world) but people I feel a bond with.

Thank you all for caring about your fellow man or woman💜

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Yes, it is weird ;)

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🤣🤣🤣Dont judge me🐶👀

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Wise words Hoski. Outside of this forum, I am constantly shocked at the things people say when their fingers do the talking and they are hiding behind the anonymity of a screen. Would they say such things face-to-face? The poster seems or chooses to forget that another real, living person exists at the other end of his or her words.

But I am, for the most part, very happy to visit this forum, and have found it a god-send since discovering I have AF. A couple of times my hackles have risen but I have chosen not to react for the very reasons you have stated. The good points of the forum far outweigh the bad; long may it continue!

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Thankyou! Glad you are here. We all need each other💜

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I came here when I was miserable, scared and pretty much clueless about AF. I’ve had a lot of help and advice .... just what I came for.

I keep things pretty light now .... I’m a different person to the one that joined last year.

8 months in rhythm after CV does that to you!!

I try to let newcomers to AF know that we were all in the same boat once.

Not interested in forum politics at all.

I like the light hearted off AF posts... cos eventually you can have days when you don’t think about it!!

Plus I posted a while back about Genesis and had a fab response.... any forum that has Genesis and Peter Gabriel fans is alright by me!!

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I came 3 1/2 yr ago, same as you. Terrified. If it werent for the people here, I would still be afraid and clueless. Glad to hear you are doing so well!

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Good morning Hoski and anyone else who's still here! I've been following this lovely post and my inbox is now choc-a-block full with notifications :-D

Lots of wise words and interesting thoughts.

I just wanted to add a few words. This forum has helped me so much. I can hardly believe the difference in me now to the nervous wreck of a person I was this time last year when newly diagnosed. I'm more of a lurker these days, unless I can't keep my mouth shut, which happens more often than I'd like 😂.

I think that strong groups like this are often, after time, made even stronger by the odd little upset.

I hope that people will remember the person who's left with fondness. She was a friend to so many, always kind and full of good advice. What happened recently is sad, and perhaps something many won't ever understand, but I for one am going to miss her 😿

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She was pleading for people not to analyse or make assumptions about her, or keep giving advice and telling her what to do when they didn't know her or the whole situation that was personal to her. She didn't want that. Unfortunately some really caring men, still rushed to try to give her support and that made her even more cross. (I think those men that did are totally lovely and it showed that they really cared).

Me, I love any help or advice and would have wallowed in it and lapped up the attention. Unfortunately, we're not all the same and she kept asking for what she wanted and the men just didn't understand which made her blow her top and accuse them of not listening to her (truthfully they weren't listening, they were too intent on helping her). I think what she was asking for and the manner she did it in were both quite unusual. It took me a while to understand what she was pleading for. If any men still don't understand, then I'll try harder to explain.

Jean

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Good morning, I have just been reading through this post and its many many comments. All excellent by the way! It is very hard to understand a persons personality and sometimes writing something just never sounds the same as people saying the words. But as you said Jeanjeannie I agree I love the support and advice from everyone’s experience and would wallow in the support and care. I am relatively new to this forum and will not be going anywhere else. I feel supported and unafraid of my symptoms as I know there is someone out there experiencing the same and that is such a comfort. I was on another site for a short while and couldn’t do with the arguments and people’s opinions instead of experiences.

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Yes, any arguing, upsets or bragging (my country is better than yours) on our lovely forum, need to be sorted out, with tolerance and understanding. Hence my advice to report a post if you find it offensive rather than become too involved challenging someone yourself.

I guess everyone on this forum is aware that they can be banned from being a member, for offensive behaviour.

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According to the book "Men are from Mars ,Women are from Venus" this is a typical response. The author says that men are more prone to offer practical solutions to problems when women are actually looking for sympathy and empathy. We can't expect either sex to be the other but it can lead to difficult situations. Though female I tend myself to go for practical suggestions. However from the way I remember the original post and responses one of the reponders suggested that the suspected response to the anticoagulant might be being imagined because the poster had had previous problems with benzos. That was not a practical suggestion and I find it hard to consider the response caring either.

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Yes, I remember that and agree, but the man who wrote that did appear to offer his words kindly as a suggestion, I hope he would have said the same to a man. Hmm, with hindsight, if directed at me that post may well have irritated too .

It's interesting to discuss, how and where we failed to be supportive, so that we can try not to annoy others on this forum.

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Given the interesting articles that Nella posted about bias against females in medicine and how male clinicians in particular often minimise the problems of women to the point of actually endangering their lives , I doubt he would have said the same to a man. The bias comes from very deep down attitudes to women in our societies which despite 40+years of feminism persist. They are even imbibed by women in their medical training ( which has until relatively recently been imparted by men). This is a problem that will take many years to go away if ever! I think most men would be much more wary of suggesting to another man that the problem might be in their head.

I went on feminist marches and attended consciousness raising groups back in the 70s but despite changes in law to fight against sexism attitudes change very slowly.

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Hear hear.

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Was I one of the men? I'm not sure I remember upsetting anyone (this time)

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I really can't remember Jed, but if you gave advice (which we were told was not wanted or even asked for) then yes I guess you could have been.

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It's great to see a friendly discussion taking place. Please remember that this forum is predominantly for those with AF to ask and seek advice.

We ask you to remain respectful to other members in your comments.

We don't want to have to remove individual's comments, but should they cause offence or upset, we have no other choice.

Thank you all for your understanding.

Regards

Rachel - AF Association Patient Services.

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I don't comment often as I am still dealing with this journey but I do read regularly most of the posts and discussions. I must say that I find it a most informative and civil site. There are a few core members who are more than willing to be of immediate assistance to those who post with concerns. Keep it up all you lovely people.

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