A Question about posts

[SLMCP]

A question - 'who can see my post'?Should I opt for everyone or only followers in my community?Thank you.

[ukmsmi4]

If you select Everyone then your post is open to the entire internet.  If you select Community then it is only open to those on Health Unlocked.  But even then the title and first couple of hundred characters are open to the internet as an advert for readers to join HU.  Personally I prefer to lock my posts because not only can your entire unlocked post be read on the entire internet but so can the replies and usually on other HU forums you will get more answers if you lock your post, particularly if it deals with more personal issues.

[Pippins2]

It is purely personal choice . Obviously we don't use our real names and I don't have to profile pic of myself so I am anonymous .Sometimes I click on groups  only if for example I am talking about family matters but I also leave some stuff open to everyone too as thats how I discovered that this group even existed by someone's post coming up when  I was googling desperate for help ...Pipps x 

[ukmsmi4 in reply to Pippins2]

Hi Pipps

I can't agree that it's purely personal choice as leaving your posts open means the entire internet can see the replies too.  Not everyone has the cognitive capacity to think to check that a post is locked before wading on in there with a reply.  I think we have a responsibility to consider other members of the forum too who may not have the same cognitive capacities that we do.

Also as the first two or three lines of even a locked post are still open to the entire internet too then people can still see the beginnings of your post and decide if they want to join HU.  That's how I found the site by seeing the beginnings of a locked post that I wanted to investigate further.

Margaret.xx

[Pippins2 in reply to ukmsmi4]

Hi,yes I can see your point but is that not the point of usernames so that we remain anonymous. 

[ukmsmi4 in reply to Pippins2]

Hi Pipps, to some extent yes.  That does help but some people can still end up putting personal information in a reply to a post that they perhaps wouldn't have done if they had thought about it more carefully to start with.  But then not everyone uses an anonymous name and it is surprising how easy it is to recognise people just from some of the mediacl and personal information they talk about.

Personally I think the default position should be that all posts are locked (particularly when you bear in mind the data protection act) but you can choose to open up a post if you think it is likely to have a greater significance to the wider audience.  That way it makes the poster think more about hte likely sorts of answers to any given post .

Yes I agree we should have the option to decide if we just want to discuss a matter broadly with a wider audience or perhaps in more detail with a more sympathetic audience.  But I do think bearing in mind that the nature of these forums is about care and support, a lot of information discussed can be very personal and we should be mindful of that on behalf of each other.  I know I personally have ME and fibromyalgia (amongst other things) and the brain fog associated with those conditions often means I'm not thinking clearly and can end up posting things I perhaps wouldn't have done if I'd thought about it.  So I feel the default position for a support forum should be locked with the option of opening up.  Especially when the entire internet can see at least the beginnings of all messages anyway.

Margaret.xx

[nightdancer]

Well, we are all sleep deprived, so it can all be kind of confusing, especially on this web site. My personal choice, and it is personal, is to make the post for only the community it is meant for.  For example, it you choose the more "public" setting, then every group on this web site and there are hundreds and hundreds with thousands and thousands of people in them. The Fibro group is huge, the chronic pain group is even huger, and so on. I think one should only post to the group that you are in, it is confusing the other way also. It also depends on how much personal info you out out there. BUT, it is your own personal choice and do what makes you feel the best. The site is set up to be anonymous, which has it's own issues in itself. I prefer a FB group where you are pretty sure you know who you are talking to. There is no right or wrong answer to this question. It is a "preference".

[ukmsmi4 in reply to nightdancer]

Hi Nightdancer

The site is a lot less anonymous than you think.  I'm not sure if you realise but the everyone setting is not just everyone on all of the Health Unlocked forums, but everyone on the internet.  At least the beginnings of all posts can be picked up from outside of Health Unlocked on say the NHS website, like many other people that's how I found HU.  If a post is locked to just community then only the beginning of the message can be read outside of Health Unlocked and nothing else.  If however, you leave the post open to everyone then anyone on the internet could read your whole message and all the replies.

To use a strange example for instance, if on an open post you said , somewhere four or fine lines into the post, last night my legs were dancing like Micheal Flatley, then anyone googling Micheal Flatlely could pick up your message and read all the other personal or medical info you put on there and all the replies.  However, if you lock it to community only, they may be able to read the first few lines but not all of it and none of the replies.

Also when people have certain conditions, like for instance ME and fibromyalgia, they often have a number of co-morbidities and it can be relevant to be on several forums.  Personally, I am on seven HU forums because they all have some relevance to my conditions.  Three are specifically ME, one is Fibromyalgia, one is Pain concern, one is Foggy's invisible illness (which covers many invisible conditions) and the other one is this one as I also suffer from restless leg because ME is a neurological condition.  But because all those sites relate to my primary conditions of ME and Fibro there is a lot of crossover so it's not always as easy as saying post only on the relevant forum.

Yes it is partly preference, but it is also being aware of the privacy of other members and you can only make an informed decision if you are fully aware of the consequences for everyone, not just you.

Margaret.xx

[nightdancer]

I have been using the internet for 22 yrs for RLS groups, so I do know what you are saying.

[alison61-jumpylegs]

Hi SMLCP and everyone who has replied to this.  I haven't been contributing much as don't consider my RLS my most disruptive condition, and when I joined HU I signed into another thread, but the replies and posts got confusing so I changed it to just the RLS thread.  I have to admit tho that I was not aware of having a choice as to levels of privacy so this has at least made me aware of something new in the website.  Actually I still don't know how to access this option but I will make a point now of finding out, so THANX.  PS I'm not dumb, just trusting.  And my name really is what it says it is !