It is a shame that within our society, there are those who sadly carry a personal bitterness towards others.
I, like so many others joined this site so I could hopefully reach out and offer help, support and advice to others by calling upon my own personal experience, medical knowledge, and life age experiences. If ever I have said something that later turns out to be wrong, or I have inadvertently said something that may have been misconstrued, or even cause upset, I have always been the first to apologise. And in some cases even eat a large portion of humble pie.
While Liver Disease in all its forms remains a very serious condition. Some people through their own ignorance and lack of understanding, offer not advice, but merely their own personal opinion. It is therefore very easy to misguide someone and can be even dangerous.
Over the two years I have been using this site, I have gotten to know a number of people, who through their own personal experiences share a similar journey to that of mine. Their advice therefore often strikes a cord in others who have travelled down the same road in life. So, to me. they talk sense. By relating to their own experiences, hopefully others won’t have to fall into the same traps and avoid further medical damage.
Those of us who have been fortunate enough to have been reborn with a liver transplant, have endure so many medical conditions and complications along the way, and it is this that makes everyone of us, qualified to speak of our own experiences.
It would appear, that a rather nasty, destructive element has been allowed to rear up, undermining the integrity of this site. Snide and disrespectful comments being made to others, should not be tolerated. While the site Administrators and modulators do an excellent job of policing this site. It’s a shame that it has to be monitored and policed in the first place.
So, I personally am very sorry to see snoutie leave all because of a lack of respect by fellow members. My fear is, that I too may have to join him, as I feel this site is in danger of becoming just another Facebook annex. This would ultimately leave those people who are seeking much need help, support and advice, turning away and going elsewhere.
Oh no!!! Don't leave Snoutie 😔 or you Richard. I'm fairly new on here and Snoutie was one of the first to respond to my first post on this forum, it was a rather scary post to do for the first time and introducing myself.. putting it all out there for all to see. Snoutie was kind, I felt welcomed immediately . We need people like you and Snoutie on here. Hey keyboard warriors, seriously, how would you feel if it were you?
Its very sad that all this is happening i do wish snoutie and you would stay but what you have said is true things are changing on here and not for the better . This is a site for help and comfort and support not a battleground . You were the first members to offer advice loveley kind men a massive loss if you leave .
A few weeks ago, a new poster called Z1 was driven away from this forum. Some said his thread was fake. Another poster accused Z1 of being an existing poster using a pseudonym. It turned out Z1 was genuine and in need of real advice.
How must it feel to come to a new forum with a genuine question and get accused of being someone else, your request your advice ignored?
I only know of one member who behaved (past tense) that way. I agree it’s a shame because on that occasion, Z1 left never to return.
That’s bad. I don’t post much anymore as I never want to offend anyone. I only post funny things and advice from my tackles with cirrhosis. I’ve only been in the naughty corner a couple of times by the mods 😂
Richard, please don't go. Your kind words and advice have helped so many...
Hi,
I am not sure what post/posts have caused offense and i dont believe in anyone being bullied . What i will say is that although i find this forum extremely knowledgeable it is the only one(i am on a couple due to varies disease) that i have seen conflict,sarcasm, arrogance ect. There has been occasions when i thought things were uncalled for but i am not easily offended. Other groups give advise without that air of arrogance that the advise giver his far more intelligent than the person who has posted the question. Share your experience and advise by all means but to make people feel silly for asking or judge them is wrong. I love healthunlocked and it has helped me through a rough few years of ill health but the only one i have ever considered unfollowing is BLT due to what i can only describe as school yard behaviour on occasions. It takes away some of the good it does. Don't give with one hand and bite the other. It takes a lot to ask strangers for help and that should always be respected.
This is all my opinion on what i have witnessed on this forum, it is not directed to any one idividual and i am still very appreciative of the advise i have been given in the past.
What you have said is spot on especially the school yard bit .very sad and devastating that such loveley kind members are now considering leaving the forum totally . If it continues no doubt many will also follow and leave .
Hope we don't lose you Richard, Snoutie is a loss too. He made many valuable posts on the forum and sadly some recent threads went a bit haywire when it got a little personal between him and others. Still sorry to see him go.
Rest assured Katie snoutie may have left that name but is here somewhere amongst you right now. It will be a challenge to all to find him, but I am not going to blow his cover. 😁 unlike what someone did to me ☹️ after I left twosmiles behind....
Really, could you please stop? You are slyly revealing snoutie’s new user name in your TtT comment above. That is mean game-playing. Please, Coco. Leave it alone. People are ill on this forum. It's not about your jokes anymore. Seriously - stop.
I really cannot say this strongly enough. It is clear to anyone who has read this forum recently that you have been slyly mocking snoutie on your comments. This is not a game! People are ill, people's lives are at stake, people don't have time for this. How do you think this childish behavior makes others feel??? If you must do it, take it to PM, but leave it behind! Let's just be done. Find something else. Please.
To those of you to whom the above exchange does not make sense, I apologize for my sharp words. But there is bullying going on, using code words and capital letters to mock a certain member. I cannot abide that without comment. I apologize for interrupting your quest for better health. I hope this will all stop now. Sending you all good wishes for peace, better health, support on this forum and good will toward all.
Welcome back. It would be nice if Z1 created a new username and came back, but he was hounded off this forum by two members, one who kindly apologised and is very well thought of and one who didn’t.
AmericanDrmocrat, I’m not standing by either with people like Z1 being hounded off the forum.
Coco I usually don't get involved when posts go sideways but you are a bit out of line. By your own posts I've seen you don't have any liver related health problems ( thank goodness) but you are offering advice without any real world knowledge other members have far more experience when it comes to things like transplant criteria and the likes. I know you mean well and you seem to have a good message about not drinking but it would be better recived on a recovery website and I mean no disrespect.
I and a huge number of other members think its time you left. Your advice for liver disease sufferers, alcohol dependants and their struggling families, which this forum is for, is zero.
You seem to think you are clever, you are nothing more than a troublemaker, dull and quite frankly its boring everybody.
I do believe you need help on a forum somewhere but certainly not this one.
I sincerely hope you manage to remain off the booze, with it you could become dangerous.
Sorry you feel that way, but whilst others disagree, I’m staying. I have a realistic view of alcohol and alcohol free products, and to sweep these issues under the carpet helps no one. I am a recovering alcoholic, alcohol dependent, whatever the term is, but I’m beating it and doing OK and planning to become an addiction counsellor. Thanks.
That comment wasn't about a faulty keyboard but rather a dig at another member. A faulty caps lock button would either stay on or off not be selective about a capital T. This forum has turned into a playground bullying game by actual adults. Quite pathetic really.
Snoutie leaving is a reminder that people with liver disease often tend to be more sensitive and thin skinned than the average person in good health. It's easy to forget this & I've probably been guilty of this on occasions & I'll endeavour to remember this.
I remember how frightened I felt when I thought I might have cirrhosis. When I was at my lowest I confessed my fears to a neighbour & it hurt when he smirked & offered to lend me his nail gun to end my life. It was a difficult time for me made worse by my neighbour's insensitivity.
I forgave the guy & I focussed all of my attention on getting well. Tomorrow I’ll visit him in hospital where he’s dying of heart & liver disease & I’ll attempt to lift his spirits. I can think of lessons coming out of this but I'll leave it at that.
See, this is when I question if my hubby really has liver disease. He is one of the most laid back people I know. It's me that's the sensitive one. I'd rather neither of us had liver disease but he's definitely the one out of the two of us that handles it best!
I find most of us who have or had liver disease are thick skinned, I find most people don't like my frankness or my dark sense of humour, I had it at my sickest and I have it now 😊
Funny you mention your frankness.i picked up on that from a couple of your posts.but I love that in people especially in this politically correct atmosphere.we’re free speech is being stifled and people are scared to voice their opinion.we are who we are at the end of the day.i have people saying I have no filter but I’m not trying to offend anyone I just say it as it is.personally I’d respect someone more who says it how it is.i Do agree that people who’ve had or got liver disease have a certain resolve because I have.but i have become more emotional post to.paul
I just think none of us have time to beat around the Bush it's the thing we learn when you come that close to dying and it was a few times for me and a few others 😉
I would prefer people to be honest with me as I do with them... A lot of people don't ask my opinion any more 😂😂 but it doesn't stop me giving it....
I was emotional last year when I was struggling to come to terms with everything I had been through and my family and I also felt a tremendous guilt for my donor and their family but I spoke to my gp and I was referred to a psychologist who helped me immensely and I would recommend it to anyone post x
That’s why I love this site because the things you go through or are thinking you think your the only one with these feelings because Ive been struggling with exactly the same thing its like I’m in mourning for my donor and not a day goes by without thinking about her and her family.ive never been an emotional person ever but I get tearful and think about it all the time.i even cried when my coordinator told me my donors age sex and how she died.paul
Seriously go to your gp then it was the best thing I did last year x
I was horrible to everyone in my daily life and that isn't me and that was making me feel more bloody guilty I was in a horrible cycle but it is all perfectly normal for us to feel that way and the psychologist helped me break the cycle and also put my guilty feelings to bed x but here anytime you need a chat 😊
It is sorry for anyone to feel that they have to leave, and I dont think that Richard should feel the need to leave as he quite rightly says he has apologised and eaten humble pie if he felt he has said something untowards, amongst the other helpful posts he has written.
But I am with CocoNutWater and angel74 when it comes to the board.
In recent months there has been far too many personal comments made and aggressive posts, which seem mainly to revolve around alcohol related questions.
Snoutie was a poster with very strong views, and whilst I believe he was helpful to some posters, on this topic particularly, he could become very personal on occassions. However, he never apologised for being wrong, offensive, sarcastic, arrogant, or upsetting readers and posters in this area.
I personally thought that Snoutie found it difficult not to get on the soap box about alcohol and didn't split out the difference between Alcohol addiction (where I can understand that Re-hab would say not to have any mouthwash with alcohol in it for example), and that of the impact related to the Liver Disease itself and on the liver (such as the insignificant impact of using mouthwash with alcohol in it, getting into the bloodstream and having any effect on the liver).
He also admitted himself to have given "medical advice" (in his own words), which is not what this forum is about - but about sharing personal knowledge and experience and not stepping into giving actual advice and into the shoes of GP or Consultants.
The Forum has been a far more pleasant place to read posts and replies in the last few weeks or so, apart from the latest one about mouthwash/fragrance, so I hope that we can get back to the helpful, knowledgeable, pleasant place that I know this forum has been, and will be again.
You have also missed the major point. Bintcliffe, 18 months into sobriety, asked the forum for advice about mouthwash. She listened to Richard64 and tipped it away.
Steve it is true it really has only been the now infamous mouthwash thread that has sullied this forum. Other than that, despite a very few unwelcome comments this forum remains the place to be! 😁👍
I don't know, Miles. I would not say the Mouthwash thread was the only one that got ugly. Your fishy cocaine post started off fun, but once Coco started slamming snoutie with indirect references to previous posts (such as mouthwash and non-alcoholic beer), and then you and Alfred joined in with the veiled references, I felt things went very wrong very quickly. It didn't help when Coco started using German to write about drinking. This public mocking of snoutie (additional references to lawsuits, defamation of character, etc.) made me feel very sad. None of us are dumb, and folks who are regularly on the forum knew immediately that snoutie was your target. Three against one is just unfair; it's schoolyard stuff. I really hope in future you guys can save that kind of chat for PM. I still really enjoy you so much, Miles, but have to speak up when I see that someone's being hurt so flagrantly.
Hi my kind friend AD. Here is my response that I make in “defence” 😁 of all this.
At the start of my fishy post I did say I expected it to be closed by the admin because it had the possibility to get out of hand., despite that I made the post as a repost to that awful mouthwash one. But there have been other horrendous threads like the one about non- alcoholic drinks as well. Some of the threads do get emotive, too much so, it’s true, but I think as others have said, the stress of this awful illness does strange things to us all, me included.
There was certainly no ganging up intended or otherwise and the references to lawsuits was, unfortunately, initiated by our old friend. Please check back if you have the patience. I don’t.
Additionally cocos last post to me was code with snoutie’s new name embedded, so you may have thought it childish but it wasn’t per se.
I don’t like rudeness or arrogance, any more than you do, or indeed anything that might put people off this fantastic forum. It is fantastic and the fact that there is some humour, I think, helps to make it what it is. Otherwise we would all be like this ☹️☹️☹️ constantly. And I for one, wouldn’t stay if it got like that!
I will also PM you with something that I can’t and won’t post here!
Yes, I realize that the upper and lower case letters were giving away snoutie's new name and I do find that childish. It's just hurtful to do so without asking first. Like a taunt.
Yes, the word lawsuit was originally mentioned by snoutie in the mouthwash post, but it should have stopped there and not been carried over to your fishy post. The countless embedding of so many words in your fishy post (most by coco, but some by you and alfred, I believe), which were clearly references to snoutie, was so upsetting. I can't bear people being made fun of, and I would stand up if this were happening to you, too.
About humor, it is indeed fantastic, which is why I was the second person to comment on your fishy post. But things quickly went south once the snoutie references began.
You and I are friends and I expect that to continue. Peace on earth.
Using German to a board member in Germany, i.e. his native language, is offensive? In that case, you’re being offensive using English. German’s easily translatable using Google. There was nothing untoward being said.
It’s the topics you were discussing - more references to the difficult comments you had with snoutie , ie, the non-alcohol beer, etc. It just seemed to be stirring things up again, rather than letting the past be the past and focusing on good health and support of others.
We both live in a world where alcohol and alcohol-free drinks exist. There is nothing wrong with discussing these topics. A lot of posters are here due to alcohol problems, including me, and I will post again on these topics if need be as I seem to have beaten alcoholism touch wood, and a few posters even say my posts are useful. That’s surprised me too. If you don’t like it, don’t read it. It’s simple. Sorry.
I found this forum 15months ago after diganosis Yes it was self inflicted due to alcohol but I didn't need a forum that was drinkers or ex ,I dealt with that demon!,i needed somewhere which talked about how my new life may be bettered or made easier.for info on meds(questions always forgotton to ask at hospital or sound trivial) although cause differs,life ive discovered very similar. I enjoy the humour and down to earth honesty and positivity from all. which I gain from Your post was well written and your"name " always catches my attention .Thankyou for your input whether I agree or not.
It's very sad to see someone leave who has invaluable advice to give others through their own experience.
Sometimes things are taken out of context online but snoutie has certainly replied to some of my queries and it's sad that he felt he had to leave due to others comments. I've read a lot of your informative posts Richard so I hope you don't follow suit.
Great post Richard. Your completely right that the administrators shouldnt ever be in need of policing the site. Its supposed to be a forum for people to get some strong support and to be given advice based on facts and authentic experiences. Im in total agreeance that lately alot of the "advice" given is based solely on opinions and some uneducated rubbish that can really serve to misguide and potentially harm the health of new members. I personnaly have been doing my best lately to avoid commenting on topics that lead to conflicts and downward spiriling opinion face offs. Like yourself I try to make sure all the advice I give is based completely from fact and of course share my experiences to help others. I will give my opinion certainly but, maintain to point out that it is my opinion.
I really believe there needs to be an understanding that when one is giving advice to a member, (especially a new member), that there is a responsibility by the person responding to ensure their advice is not going to misguide and lead people to things that are questionable to their health. Unless something is fact, than be sure to state it as an opinion. I find this to be especially prominant when dietary questions arise.
At the end of the day we dont all need to like each other on a personal level, we are human after all, but we do need to remember we are all here for the same thing and that should stay only toward liver health and coping with life with liver disease.
I have not been on the site for long and maybe it is a cultural thing across the pond but Snoutie came across as very condescending if you didnt agree with him, like he was a mod or something, very abrasive personality, not sure how someone could have hurt his feelings and ran him off the way he talks to others or guests on here, if you dont agree with a topic or thread stay out of the thread, I have respect for what he has been through but you cant treat people like crap even on message board and not expect it back no matter what you have endured
I don’t think it was intentionally condescending or abrasive, and he was well meaning most of the time. Us brits do have this sarcasm which is often misunderstood, but I don’t think anyone on this forum has ever meant any harm.
I’ve been accused of using other names, drinking, having ADD and threatened with court. I assume it was done out of humour and taken accordingly.
Richard, I’m sorry this is happening. It’s people like yourself who have helped me since I’ve been diagnosed in February with PBC. It’s scary to say the least, but your knowledge and understanding have made the realisation of what could lie ahead more palatable.
Please reconsider as you’re needed more than you know.
Please don’t either of you go as you’ve both offered some really good advice over the two years I’ve been on here. Sometimes it’s easy to get carried away. What we all need to remember is that every single one of us is on this site because we are all dealing with liver issues or watching a loved one deal with it. Everyone is at different stages of their learning about this horrible disease so just be kind when responding to each other. Take care everyone x
Bye
Reading all these posts has been a revelation, I am from Yorkshire and can never see subtle caps etc.
I have read things on here I disagree with, but have learnt from those opinions, on how others feel and how liver disease effects the way we are and think.
I defend any ones right to say what they think, but say it dont hide it and say it with respect.
The people (All of Them) on here have been a fantastic support for my journey, helping me understand many aspects of peoples suffering on their journey.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
All followers please read RE: test results and asking for medical advice on the forum
First Post from a "Noob"
How does a person find out the degree of severity of their liver disease/cirrhosis?
