Should I hide this post ?: I have been... - Lung Conditions C...

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Should I hide this post ?

56 Replies

I have been a member of the BLF for light years, yet I have been struggling to work this one out.

Can anybody tell me why some posts are hidden, do they who hide their posts have something to hide ? could anybody enlighten me as to this phenomena please

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56 Replies
peege profile image
peege

It's because those posters have clicked on 'this site only' rather than the whole world seeing their post/question.

I get this occasionally so go to my profle and log in with my email & password. Try it, if it doesn't work then I'm speaking out of my a**e

pergola1 profile image
pergola1

I have wondered about this. I haven't hidden my posts. Perhaps I should but why?

Its individuals choice to lock a post or leave it unlocked.

Left unlock means the www can view, and posts will be picked up on google search for all and sundry to see.

If the post is locked for this community members only to view, it keeps the content more private.

Those who believe someone has got something to hide because they lock their post would be mis guided in their presumptions as any one who wants to see a locked post, only has to join the community.

I wonder why someone would suggest a member has something to hide just because they prefer their post to be viewable by members of the community only.

So to answer your question "Should I hide this post" I would say "its entirely your choice" :)

in reply to

Well said!!! :-)

in reply to

Well said BlakeyC x

peege profile image
peege in reply to

Perfect BC, better explanation than mine. If I'm writing something personal about my feeings I dont want the whole world to see it only those here who'd understand & not judge ;)

in reply to peege

Quite right peeg :) x

in reply to

Hi yer a keep mine open so hole world can see mine or how would mad scientist find a cure .. Occ rant well it all part and parcel

in reply to

You are the future when does the block button arrive

in reply to

There is a contradiction in BlakeyC comment

I asked, have those who choose the hidden post option got something to hide, the answer is obviously, yes.

It was the reasoning that has, until now eluded me, which may explained by some of the comments/replies, regarding privacy on a public stage.

Can you spot my disguise, I bumped into Jeannaanne and Blakey C the other day and you never said Hi Albert how are you doing

Toci profile image
Toci in reply to

You are mistaken Albert, and there is no contradiction. There is a big difference between locking a post for members' eyes only and having something to hide. It is about choosing who we wish to share information with. Just as you would tell your doctor about health issues that you would not share with your postman, and discuss money options with your bank manager that you would not share with your dentist!

Tallyman profile image
Tallyman in reply to Toci

Health Unlocked passed 2 million members in 2013 suggesting the level of privacy is not a one on one conversation with the postman. Anyone who has an e mail address and agrees they will be bound by the terms and conditions can join as it should be if we genuinely want as many people gaining from our experience as is humanly possible.

Keeping jokes cat dog and goldfish stories for members as only they may want to read them seems reasonable beyond that the anonymity of screen names and the choice of how much of ourselves we share protects privacy so we could pass in the street without knowing.

Toci profile image
Toci in reply to Tallyman

Sorry, my comment was not meant to illustrate the number of people sharing, only the fact that people had the choice of which groups to share with (as Mark explained) and was primarily added to the post to point out that this did not mean anything was being hidden. Thanks for your input; it gave me the chance to clarify.

-fingerscrossed profile image
-fingerscrossed in reply to Toci

I agree toci, it is a matter of choice

stone-UK profile image
stone-UK

Hi

If they wish to read further or make a comment a hidden post will encourage people to join. Hidden post can only be read by members. As membership is only a click away it will not stop undesirable as people may think.

It is a persons personal preference.

butter-fly profile image
butter-fly in reply to stone-UK

Do agree Stone.

But when I first joined HealthUnlocked I did wonder about posts and questions that were 'hidden.' The lock shut me out of things I would liked to have viewed and it took me a bit of time to realise I could join any category that would interest and help me.

'Fraid I'm not much of a site navigator but getting better!

tomc profile image
tomc

No you are right peeg.

Sometimes you will see a message "members only.

Tom.

So the question is answered as has been how obvious should be.

in reply to

Obviously a popular question.

Mavary profile image
Mavary

I didn't know you could do that. Just shows how much I know about computers. X

ostiad profile image
ostiad in reply to Mavary

me neither Marvary x

littlecamelia profile image
littlecamelia

This is a question I have wondered myself. Bit disconcerted that all posts seem't for this community alone.

amster profile image
amster in reply to littlecamelia

Still wondering same as you

ostiad profile image
ostiad

Hi A-Einstien, I value your comment and get the disguise comment too! I believe you have highlighted an area that some of us just didn't understand fully or even notice when posting comments. Due to your comment it has made many of us more aware of what we put down in writing; many of us 'open up' in times of stress when we need a friend to listen to us. Clearly it is easy to join the group if one wants to see more. NB does anyone know if these comments are public or is it just when we create a post? June

in reply to ostiad

Do explain explain the disguise comment for us all to be clear in the understanding osti perhaps A_E could clarify too.

I prefer plain speaking and hearing honest and supportive comments moSTly and not really interested in riddles or game playing.

I would be interested in Jeannanne's view on this too. Thank u in anticipation

Moderator profile image
Moderator in reply to

Good Morning Everybody

This issue has been blown out of all proportion.

When anyone creates a post they can make it visible to members of the community only or they can make it available for everyone on the world wide web to see.

At the end of the day it's all about personal choice. From the BLF/HUL point of view it's better posts were viewable by the whole world as, for example if someone googles COPD, posts on this community would then appear in the search results and that may then mean that person would find their way to this community and discover the wonderful support that is available here.

Also posts open to everyone also appear as "highlights" on other parts of the BLF web page to illustrate the types of questions here.

Making a post visible to only members is everyone's choice - and we would never stop that. The only posts that we feel should always only be seen by members of this community are the Jokes - that means the Jokes don't appear as "highlights" elsewhere.

So we as Moderators don't see any deceit if members choose to restrict their posts only to members - and we find it difficult to understand why some members consider it an issue.

Time to move on from this issue.

sassy59 profile image
sassy59 in reply to Moderator

Well said on all points Moderator. Moving on..........

ostiad profile image
ostiad in reply to

Hi Blakey, thanks for your response as I did not intend to open a can of worms when I commented on the post. I just thought it useful to admit that I hadn't even looked properly at the site. I believe A-E meant he is quite anonymous at the moment because no one recognises him, hence his comment about seeing you (I think that's what he meant). xx June

Moderator profile image
Moderator

In which case they should behave themselves and not get banned if they are that bothered.

katieoxo60 profile image
katieoxo60

Glad I didn't come in on this post earlier, I am one of those who prefer medical things to be community only especially now the site has become so big after all originally I joined BLF forum not a national google site. That's how I feel about it.

in reply to katieoxo60

I respect your opinion we should talk as adults I notice A-Einstein has been removed one more lost.

katieoxo60 profile image
katieoxo60 in reply to

thanks for that Bully

Moderator profile image
Moderator in reply to

A number of members have had their accounts restricted - a pattern of behaviour has been identified by the moderating team - profiles that were created several months ago and had no activity since then, suddenly starting to post - and as a group.

If anyone notices any similar profiles please report them.

Thank you

breathless profile image
breathless in reply to Moderator

Moderator Hi, Would that mean that I am on a restricted account. No I don't get on very often this time due to all the help and support that I give on Facebook, I only come on when I witness something of importance, However moderator I probably do have something in common with the majority contributing on these Pages. Yes Living with long term conditions, No body know anything about what life is like, i.e. as we get up out of our beds sitting there wriggling our feet in order to get our medication moving through our system. Yes actually wondering how or even if we are going to see our bed again at the end of the day. I know with myself, When I am on my Steroids and Strong painkillers they send my mind all over the place and it is so simple to say something wrong, no matter how hard I try not to. I know a while ago I was delivering a program at a Mental Health recovery centre at the end the Participants started applauding, When asked Why, the reply came "This is the very first time that we have been spoke to like adults and also treat exactly the same yes as Adults Why. is the difference? My reply was because I was once in the exact same place as you are now, So yes I am talking and acting via the experiences I gained at that time, Yes as a Facilitator come moderator I still conduct myself as that, When someone mentions something that doesn't match our Ethics I don't go suspending or even expelling them I use the experience that I have attain. And sit down and have a chat with them and 99.9% of the time we sort it peacefully with not having the need to fill page after page talking and complaining Which normally ends up with taking sides, The most important things about these Group's, Forum's and communities are that people are able to find somewhere to find, Help, care guidance in order to stop them going into Anxiety or depression even, Because they are scared to death about their Future. Oh How it would be so wonderful if this could be a Place where these beautiful people Yes Like myself and so many more on here could find that Love and care Yes and as we go on we are able to share the same with other's that follow us on., Yes anyone as my permission to read this because that is the reason that I wrote it, Night

in reply to breathless

I thought I had joined the group you speak about now I am not so sure I have enough problems without looking for more here.

in reply to

There are many nice people here Morse stay with them

breathless profile image
breathless in reply to

Yes coldcider MMM wow sorry but I am sat here in Crantock near Newquay in Cornwall drinking your beautiful name. No I am not but yes I can Dream can't I? YOU are right there are so many beautiful people come on these pages and Yes I believed that I said so in my rather Large reply. No I am not knocking anyone. However there is a fantastic Self Management Program being delivered to people here in the UK. Last year as we were being announced that we were the winners of the Health OSCAR for our Region It was said by the chairman and host of the wonderful evening How it was wonderful to witness figures of just over an 80% Success, Yes and the reason why is because the beautiful People Facilitating/moderating the Program are exactly the same as the Participants and that is they too have long term conditions. So they have the experience of what others are going through, I am not sure if that is so here. Anyway Please Learn, Love and yes support one another Bless

Moderator profile image
Moderator in reply to katieoxo60

We want to make sure as many people find their way to this community to get the support it is good at providing. Like it or not internet searches direct through google or via other sites such as NHS choices are the main way that is going to happen. this community isn't and never will be a closed community.

in reply to Moderator

It's nice to know someone is now watching what is going on. :-)

poppyval profile image
poppyval in reply to katieoxo60

I too am glad I didn't come on here earlier Katieoxo, well said, I quite agree with you.

katieoxo60 profile image
katieoxo60 in reply to poppyval

glad that I am not the only one with the same feelings, this is supposed to be a friendly site. But i am glad the moderators have picked up and tried to sort out the confusion. Hopefully things will settle back down now.

in reply to katieoxo60

Like it or not is a friendly site I have a lot that must be learned in this community that much is clear now. I saw nothing more than you saying the site had changed since you joined I cannot comment on the past but I am confused by the now.

katieoxo60 profile image
katieoxo60 in reply to

You do sound confused Morse, when I joined it was a BLF forum for lung foundation members, then it joined forces with others and suddenly became Healthunlocked for all different illnesses and now apparently if you post open it goes out to worldwide web., and has thousands of members. Many members do not want to discuss there lung problems or personal problems on the world wide web so they confine their posts to the BLF community. There are hundreds of communities on Healthunlocked that can be joined, I have been a member of the community since 2009 and am still here to spite all the changes. Hope this makes it clearer to you my comments and sorry you feel confused.

Moderator profile image
Moderator in reply to katieoxo60

The BLF has had an online community for about 4 years. It has always been open to anyone and never just a community for BLF members. Even in the days before Health Unlocked the community was always out on the World Wide Web. It changed to Health Unlocked because the old software it was based on was basically rubbish. Moving to Health Unlocked has enabled the community to grow to what it is today and more importantly to continue. If people don't like "talking" on this community because it is so "open" then perhaps it's time to move on and find somewhere else - but I think you would struggle to find a community as supportive As this. Remember if this community wasn't as open as it is then perhaps many members wouldn't have found it.

breathless profile image
breathless in reply to Moderator

MMm Yes I was invited along with others to help trial the very first BLF Forum and When the Forum was opened up, Yes it was opened like the Moderator as said Yes to the World Wide Web. I am involved with Groups with Members from all four corners of the world and Yes how wonderful it is to Witness The care and support we people receive and give back to people all over the world, Yes on the Original Forum I did have problems with one country but no that was because of one person that shouldn't have been here but never mind Yes we learn, The thing is We all need to learn something very important, Each one of us are Human Beings So yes each one of us is open to making the odd mistake, Yes I admit that I have made so many. The thing is How we learn from our mistakes Is what we turn into in the future. Yes I sincerely Hope that I have learned from my past experience on these forums. Please remember we all need each other. When living with Long term Conditions there isn't one of us any better than another. Yes I admit that the control that I had over my 4 lung conditions that yes I was stronger than most, That was until Recently. I became friends with one Beautiful young Person Who 24 Years ago received a Double Lung and Heart transplant when she was 13 years of Age, Nicola was the first person to give Birth Naturally Yes a Beautiful Daughter Megan now 16 years of age, The Friday before Christmas I drove down to her Home Yes to travel Nicola's Final Journey with Her, Everyone begged me to stay down there and Drive home after a good nights Sleep But No, I had a sitter caring for my wife Ann so it was for me to get home as soon as I was able. I promised Nicola's Brother if at anytime I felt Tired then I would book into the nearest Hotel. However this Stronger than Most So I thought after driving nearly 600 miles in one day, Collapsed when I was home, Just after when I had to take my wife to see her Cardiac Specialist Yes Christmas Eve and because of my fatigue I miss these 3 steps and Down I went breaking 3 Ribs Yes Agony, So what I am saying is not one of us are any better than anyone else So we are always Learning yes from one another, Please don't take that away from one another, I can honestly say from Experience We are so Isolated on our own When we start dropping into the black hole. And Yes this time is was someone from our American Family on Facebook that brought me back to where I am Now, Please Learn from one another, If you don't like something that someone say's then just ignore it However you can still learn, Night to you all Bless x

in reply to breathless

Inspiring breathless we can all learn from each other you have one bad experience but keep sharing because the black hole of isolation will be dropped into.

From all your experience I guess you would keep health posts open as Health Unlocked prefer then we learn from one another.

Ali

spiderman profile image
spiderman in reply to breathless

do you have access to a community matron,who can help and le ason with other help issues

breathless profile image
breathless

Stitch isn't the Group COPD supposed to be a closed group and mmm lol how do you know who I am on Facebook. God yesterday someone from my own town was so upset because she believed she was letting her members down because of the back log of approvals All I said was the 3 approvals I have in she could cancel them if that would help and even though I don't have much time left in my Day if she was to inbox me Hopefully I might be able to help in some small way. The next I knew as I was browsing the site God 40,238 members I get a notification. You have been made an Admin on the Group. Stich if you do know who I am then you will know friends on my Facebook account are already begging me to get to my bed and sleep yes at 03-30am already So because this other group was a exchange, sell and buy group I had to write and decline the honour they had bestowed on my. Stitch me finks I have a friend on Facebook with a photo of a dog like yours yes maybe a different Pose though, Please all take care.

in reply to breathless

Think I have it now on facebook you are talking to friends here you cannot say so keep medical things to yourself.

I am not sure if I have made any comment before,but I do follow what is being said daily and without logging in, so I dont usually see the content wherre it says hidden posts.

Like breathless implied It concerns me that there is a bit of a witch hunt for the moderator descibes as a pattern of behaviour, from what i can tell from this thread two people have been removed from H.U. or BLF for giving what appear to be reasonable comments, I am rather concerned on behalf of anybody that can fall into this category described simply by having joined and then after several months make a post only to find they have been removed.

hoping this does not offend anyone, but I would like to remain here as a regular follower without having to go in the category described by ther modetrator

breathless profile image
breathless

Stitch My own group is only small Yes I am still with the GROUP COPD but I am not often on there I have my own small group, Where people are able to go and yes a little like the BLF's Breathe Easy Groups, Yes to be able to relax, Socialise, Yes I use a lot of humour and also there is always advice and support for anyone that needs it. Yes and the beauty of it everything stays within the Group If you want to have a look then speak to me on face book. Being truthful I don't get much time to go on the groups I help and support more people in my Inbox however its mainly youngsters with Cystic Fibrosis, Cerebral Palsy, and yes awaiting their transplant Journey. However I am able to give them all the love and support there is but when it is their turn to travel their actual transplant Journey they need someone with that experience. So I get other of my friends to befriend them, Stitch if you are a friend on FB then you will have witnessed on my wall that I have just lost an amazing young lady and friend, Yes Nicola had a doubly lung and Heart transplant 24 years ago and was the first to have a Natural Birth Yes Nicola's words Yes she gave birth to a beautiful Daughter Megan WOW she is 16 now, Nicola plus were travelling up to my place in March for a few days then was going to give a talk to my Breathe Easy Group But like I said I lost her 2 weeks before Christmas, I drove down to be with her on her final journey, However I drove back on the same day, My Wife Ann is stage 4 heart failure and stage 4 kidney failure So I needed to get back for her and so my daughter could return home, WOW everything was great the whole 600 miles nearly but when I got in it took its toll on me and a Couple of days later after taking my Ann to her Heart Consultant Christmas Eve on our way out of the hospital Yes okay I admit Fatigue I missed 3 steps and crashed down breaking 3 ribs and the Pain is only just easing so never take any of my advice Night my friend Bless you and all the others on here xx

in reply to breathless

I had not realized Ann was so ill very sorry to hear such news

breathless profile image
breathless in reply to

We were down on our Holidays in 2012 on the last day before leaving for home, Ann was struggling yes desperate for breath but also everywhere swelling up. I wanted to phone for help but yes Ann was right Her Gp had put her on a different Diabetes pill and told her they may cause fluid retention so Yes it eased my concern and as we were going home the following morning I phones our Practice up to make an appointment soon as we were home. The then Gp examined Ann saying she had a lung infection and prescribed Steroids and Antibiotics, a couple of days later Ann had an appointment for her annual review. As we went into see the Practice nurse concern grew straight away " Ann I am sorry but I can't do your review because there is something seriously wrong," She sent for one of the doctors and yes it was one of the Registrars, He examined Ann, Asked the nurse for a blood test, ECG and place her on the nebuliser. Ann Claimed she felt much better when on the Neb: When seeing the results of the ECG he asked if we had a vehicle but then changed and phoned for an Ambulance. After test in hospital it was said that the problem on the last day looked as though Ann had a Mini Heart attack. More test were ordered, then Ann was diagnosed with Stage 4 Heart failure with less than 25% of Ann's heart functioning as normal. They gave Ann an Angiogram after finding her bottom left Ventricle was dead altogether so needed to find the cause and all the medics was certain it was a narrow or blocked artery but found nothing wrong, Yes after a while the medication was keeping Ann's Heart balanced, However a blood test came back abnormal then a second one yes the same. They decided to scan Ann's LOL I called it the Offal region But yes Kidneys, Liver etc, It was found that Ann had a Genetic condition polyps on her kidneys and liver So needed to keep a check on Ann's Bloods, We were sent to a large Hospital in Nottingham Yes the City where Ann was diagnosed with Stage 4 Kidney failure, In June 2013 I received a phone call to get Ann to her Renal unit Like Yesterday. Yes lots of tears and worries. When arriving Ann was informed that at this time because Ann's stats had dropped into the End Stage the Consultant would be asking if any Member of our Family were willing to Donate Ann a Kidney BUT Yes BUT they had been in Contact with Ann's Cardiac People and their reply Was Sorry Transplant would not be an Option Her heart wouldn't survive it, So Sorry Ann but it looks like dialysis. But not just now Your stats have just eased back into Stage 4 and since then as increase even more to 25% So yes They are needing to keep an Eye her Stats so regular Blood test In July I took her to the coast but needed to return because Ann suddenly was in Agony And Feeling Ill. Yes I did everything bar break speed limits Then yes a Police car pulled us Just what we needed, Don't Worry Sir you haven't broke the Law however you were very close so many times. I explained and he said Okay follow me, To finish it off it was then decided that Ann was not allowed to travel in a car for more than 2 hours in any 48, Straight away Ann was placed on Oramorph and Diagnosed with Sciatica and I feel so much for Ann the Pain is so bad for her. If only I could share half of it, Yeap Sorry a little upset now

Lakeland profile image
Lakeland in reply to breathless

When people search for how they should be living I hope they find this breathless.

Bless you both

Have you got a link for the Facebook copd group please.

Ali

Colours23 profile image
Colours23

Maybe hide from the other sights,only let the people on the sight you are on read what you write, as there is anxiety and depression sight,you can enroll on all of them if you want to or just blf one.

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