Before I was diagnosed with fibromyalgia i spent a long time with Dr Google ( you guessed it ...googling my symptoms ) and one of the best resources I found was this forum however I kept butting up against locked posts and because I was in a bad space I got angry and resentful and refused to join ...!when I got my head from my behind and joined , I gained a lot of comfort from reading peoples posts that correlated with mine and that gave me the courage to go to my GP armed with a barrage of Questions
I feel that to lock posts is somewhat uninclusive and may send a message that we are an unfriendly lot when actually the opposite is true. Not everyone wants to join online support groups straight away they just want to hopefully grab at some comfort and go. So if we lock our posts some people will just give up and potentially spend hours trying to grab comfort and reassurance on less reliable sources online.
Written by
Ballroomdiva
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FMAUK uses HealthUnlocked platform to provide this community for our members and the technical side of the site is their area. They want members to join but all want them to use them and have a certain level of security according to;
I my own personal opinion, I think there are 2 sides to this. Yes we want to be found but members also have the right to lock there posts so only the 'first couple of lines can be seen'. The non member viewing then thas choice to join the site to read the rest of the post and then has the option to reply as a member. Some posts are private and locked as people do not want the whole article available to the search engines and even on occasion community admin lock ones with sensitive issues to avoid this.
In general members prefer to reply to locked posts despite their anonymous usernames as they share to their personal experiences to help members on this site who live with Fibromyalgia too. Not all posts are locked and these can be found by search engines and refer people to the site.
I don't think members are put off from the way the site works as with all sites various people are on a spectrum to how secure they want their posts to be and others not so. The site therefore is giving people the option to do what's best for them!
No I down loaded the app and don’t get any of what you’re saying, I take it that is why I can only write short posts before can not see what I am writing.
Oh and I forgot to say a widget of this community is on the NHS Choices UK Fibromyalgia information ....if you're in the UK - this is helpful for patients to find us.
No I may suffer from time to time with “ Fibro fog” but as far as I know I am not “ Confused “. Thank you however for taking the time to put your points across if somewhat patronisingly
Yes I can see your point,but not everyone feels comfortable joining online forums.... it took me ages to join mainly because I felt self conscious about asking questions....thank you for answering in a non judgmental attitude xx😊
So therein lies the problem, you can't please all the people all the time! Some like to only contribute to communities that have locked posts as they think about security and others don't mind posts being shared. I am genuinely sorry looking in that some closed posts were off putting and made the community seem unfriendly but of course if people want to lock posts it is their free will to do so for there own reasons which we as admin respect their decision
Because if outside search engines and our privacy we need to lock out posts otherwise what we write here might be scrutinised and taken wrongly . And what I say to my friends I don't want the rest of the world to see .... this is my feeling of locked posts xx
Thank you for replying... my feelings are that if something I write ( unlikely..but you never know ) helps someone from inside or outside of the forum then that’s all to the good. xx
Yes it is . But with social media attaching people with fibro calling it a fake desease and oh you can use Internet yet you are too ill to work a job is another great thing for this government and its followers ...... we fibro people need to be around people we trust . Not people who will exploit what we go through every minute if every day ..... these people on here are all genuine sufferers and probably most like me who can't hold down a full time job or even a part time one without getting sick and then the government says you can work .. have they tried to work and get maybe 4-5 weeks a year work . Get out on the the sick then back to job centre and back to catching up on all the bills they got when working add are now trying to pay off from a merely £65 a week ... do they think I want to be sick and live with £65 a week to my name .. no they think I am defrauding everyone an. A scam artist and if they can find anything out about me and my daily habits than can go against me such as using the internet to have any kind of a life they will use it against me and force me to keep going in this cycle I have been in for 10 years ... so as far as I'm concerned I will still k to lock posts . Because I can be me here and I can tell if maybe one good a week I had instead of it being used against me to be told well you do get good weeks ....
I was one of those people who looked on the internet for support and some answers... NOT to make judgments about the people who resided on the forum. Yes some people will have that mindset but most people who are looking at these posts via a link are desperate for support and help. You have obviously had a lot of issues with naysayers and I can totally understand..I’m not even sure my husband believes that it’s a proper illness so as I say I do understand. Thank you for your reply I do appreciate it. xx
No that’s ok. I just thought you were being patronising , obviously I was mistaken I think it’s good to have discussions and I would hate it if you felt you couldn’t reply. 😊
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What do you do for fun?
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A long night
