A Fib, stress and personalities - Atrial Fibrillati...

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A Fib, stress and personalities

75 Replies

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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75 Replies
BobD profile image
BobDVolunteer

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.

Hilly22 profile image
Hilly22 in reply to BobD

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 😊

jeanjeannie50 profile image
jeanjeannie50 in reply to Hilly22

I second that re BobD HIlly.

Pennie1958 profile image
Pennie1958 in reply to jeanjeannie50

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

GrannyE1 profile image
GrannyE1 in reply to Hilly22

Here here

doodle68 profile image
doodle68

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.

in reply to doodle68

Yep

doodle68 profile image
doodle68

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.

in reply to doodle68

Me too

Buffafly profile image
Buffafly

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 💓

in reply to Buffafly

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

doodle68 profile image
doodle68

John I agree... :-)

Finvola profile image
Finvola

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.

in reply to Finvola

Yes, very impressive to me as well.

jeanjeannie50 profile image
jeanjeannie50

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

in reply to jeanjeannie50

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.

Jalia profile image
Jalia in reply to jeanjeannie50

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

jeanjeannie50 profile image
jeanjeannie50 in reply to Jalia

Glad to see you're here again. x

jeanjeannie50 profile image
jeanjeannie50 in reply to Jalia

We've missed you. x

SpritzerAce profile image
SpritzerAce in reply to Jalia

Hei! We miss you.

irene75359 profile image
irene75359 in reply to Jalia

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

Polski profile image
Polski in reply to Jalia

Miss you!

doodle68 profile image
doodle68

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 .

Buffafly profile image
Buffafly

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

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.

in reply to

Im on a roll today I guess

Kevinder23 profile image
Kevinder23

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

in reply to Kevinder23

Thats how I feel too.

Buffafly profile image
Buffafly

😸

Becksagogo profile image
Becksagogo

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.

SpritzerAce profile image
SpritzerAce in reply to Becksagogo

I totally agree with you.

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

Ytarnt profile image
Ytarnt in reply to

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.

doodle68 profile image
doodle68 in reply to Ytarnt

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 .

Ytarnt profile image
Ytarnt in reply to doodle68

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

Gilli54 profile image
Gilli54 in reply to

😂😂👍

healme profile image
healme

Agreed 🤗

Gilli54 profile image
Gilli54

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. 😃

Auriculaire profile image
Auriculaire

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.

Finvola profile image
Finvola in reply to Auriculaire

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

reinaway profile image
reinaway in reply to Finvola

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.😍

Fibfab profile image
Fibfab

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 :-)

Hilly22 profile image
Hilly22

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.

jeanjeannie50 profile image
jeanjeannie50 in reply to Hilly22

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

Hilly22 profile image
Hilly22 in reply to jeanjeannie50

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

Buffafly profile image
Buffafly in reply to jeanjeannie50

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......)

lwm1198 profile image
lwm1198

Good points!

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

in reply to jedimasterlincoln

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

jedimasterlincoln profile image
jedimasterlincoln in reply to

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

in reply to jedimasterlincoln

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

jedimasterlincoln profile image
jedimasterlincoln in reply to

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.

in reply to jedimasterlincoln

Boom boom!

in reply to jedimasterlincoln

Thats funny

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💜

jedimasterlincoln profile image
jedimasterlincoln in reply to

Yes, it is weird ;)

in reply to jedimasterlincoln

🤣🤣🤣Dont judge me🐶👀

irene75359 profile image
irene75359

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!

in reply to irene75359

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

Buffafly profile image
Buffafly

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 🤗

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!!

in reply to

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!

Hilly22 profile image
Hilly22

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

Hilly22 profile image
Hilly22

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 😿

jeanjeannie50 profile image
jeanjeannie50

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

Tikaneko profile image
Tikaneko in reply to jeanjeannie50

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.

jeanjeannie50 profile image
jeanjeannie50 in reply to Tikaneko

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.

Auriculaire profile image
Auriculaire in reply to jeanjeannie50

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.

jeanjeannie50 profile image
jeanjeannie50 in reply to Auriculaire

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.

Auriculaire profile image
Auriculaire in reply to jeanjeannie50

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.

Seawalk profile image
Seawalk in reply to Auriculaire

Hear hear.

jedimasterlincoln profile image
jedimasterlincoln in reply to jeanjeannie50

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

jeanjeannie50 profile image
jeanjeannie50 in reply to jedimasterlincoln

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.

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.

Marina_D profile image
Marina_D

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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