I dip in now and then and have noticed this chat is dominated by a few regular commentators. I find their comments useful but hearing a wider range of differing views would be refreshing. I just wandered if anyone else felt the same and would like to hear any suggestions how this might be achieved. Thank you.
Has anybody got any ideas of how to improve the Healt... - NRAS
Has anybody got any ideas of how to improve the Health Unlocked chat - to attract more users and help more people?
Written by
Flinda
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66 Replies
•
I think there are way more than a few regular users here, it’s the same as any social media platform in that people post and then don’t for a while, they dip in and out. We do get varied replies to peoples questions but alot will be similar because many are going to have similar experiences with their RA and meds. You will get people who have more experience/longer diagnosis posting more just because they’ve been through more but newer diagnosed/posters have just as valid opinions and I hope people feel that. I think there’s too much off topic posts that should be on Facebook/Insta not here but that’s a different matter and has caused problems before so I’ll shut up 🤐😊
Hi Kitj, Maybe an off topic chat/separate section if this was possible, I always thought would be good as although it’s lovely for chatting and it does mean a lot to those who feel down and need a lift, so it’s helping in a huge way for many especially of they are on their own, I can see how it could be really off putting for people coming here to talk primarily RA and worried about something RA/closely related issues. Problem is for some, where do those issues end as RA impacts so much else. Spills into almost everything at times. Newbies and established people just as valid as have equal relevance. Many people do put “off topic” on and I think that helps more for people looking purely for RA/RD advice.
Still I understand well and feel it’s really relevant what you are saying. However, some regulars keep the board from being lightweight with posts so .... I think several regulars are invaluable for their upbeat vibe and helpfulness and also many years of experience. Also it’s very good to hear from those with newer experiences as they can differ vastly from say 27 years ago when I was first diagnosed. Let’s see what the admins think! I’m only dipping in and out VERY selectively at the moment. 😍 x
• in reply toNeonkittie17
Well said!
RA impacts on every aspect of life, friends, family, social, economic, intellectual and physical. It can be difficult to say what is relevant and what isn't???
Exactly. It spills into such a lot else as we know. 🤨 x
From previous posts I think a lot more people read the posts than make posts. I have to admit that I find the site very helpful. Perhaps if we could ensure that we head items as OFF TOPIC unless they are medical issues, it would enable readers to 'skip' those. Just a idea.
Hi Flinda, what are your suggestions? I replied with mine to Kittyj but it was meant for you as well. I am taking some time out again shortly but will check back soon before I do.
Can I ask why you've never replied to any posts?
I was wondering that too! I guess the only way to get a 'wider' range of views is for more members (such as this member) to post and respond more often?😊
I'm happy to read posts from everyone, but I certainly don't mind people posting regularly. For me, that's what makes it feel like a community and that you get to know other members a little. I, for one, would miss that aspect.
As for differing views, I completely agree with Kitty's reply that many of us go through similar experiences with the disease and its treatments etc, so similar things may well be shared by many. Often people like to get re-assurance "it's not just them" (and I hope they do). I also agree that whether you've had the condition for 6 months or 60 years, experiences at each end of the scale are just as valid.
I appreciate that some people have mentioned about the number of off-topic posts and obviously that's personal choice. Personally, I don't find that there's too many, and they are usually clearly marked, so can be ignored if it's not interesting to you, just like any other post. I don't belong to any other social media sites, and don't mind having a break from RA chat on occasion to read about other things - whether it's something we can join in and have a laugh about, the much-missed music quiz or sharing a bit of sadness.
As NK says, it can be hard to compartmentalise our lives and thoughts/feelings to know exactly where RA begins and ends in terms of how it impacts on our lives.
Best wishes 😊
Yup true. xx
Ps. Sorry ML. I realised I started this post by replying to you, then stupidly didn't make it clear the responding mainly to the questions raised by the poster. Doh!!🙄
• in reply toKags1068
Totally agree, the disease is as constant as life so it becomes part of it hence off topic posts from sufferers. However nothing is off topic really when it’s experienced by a fellow sufferer who posts to share .
Nellies47• in reply to
It affects us holistically definitely. I'm diagnosis autoimmune inflammatory arthritis since May 21. Also have primary billary cholangitis since Dec 20. Fatigue , joint and muscle pain and my main symptoms. Also dry eyes mouth ear and jaw pain occasionally. I'm on plaquenil for 6mths with no improvement and had a month of steroids in dec which helped but caused gastritis and worsening restless legs. At moment I'm in alot of pain in fingers, hands, wrists, elbows and feet, ankles and knees. Fatigue is a lot worse in the last week.
I have found reading your posts, especially from those with years of experience very useful. It has helped me realise that there will be help ... there's lots of meds out there and that I have to be patient.....it seams it can take some people years to get on the right meds. This had been scary and comforting , cause I know I'm not alone.
I'm seeing my rheumatologist again on Tuesday so please God she will give me something to regain some of my life. I'm slowly getting to grips with the knowledge that there will be a new normal for me. I use to run , can bearly walk any distance at the moment and I'm a public health nurse, I've been off work since Nov with this.
Thank you to you all for your posts...I know don't post often but I do read them and your all helping me anyway 💐❤
I agree completely.I do try to miss out reading negative posts though, I know they are very teal and valid but for me personally I try to focus on informative, funny or positive ones x
Kags1068• in reply to
I agree with you too!! 😁
Reddit have a wider reaching board, things are quite transient and you don't get to know people who post. It's quite simply a question and answer site. I visit there and I also visit here and get different things from each board.
Here I guess you're going to get a wider range of answers if more people post, this board is what people make it. You'll have to ask people who don't post as to why they don't.
Sometimes I just read posts and sometimes I post. I find this site very helpful either way 🌟
I’m not sure why or how the site can be considered to be dominated by well-meaning people hoping they can help, & as Kitty says there are far more than a few regular users. It's not a chat site, is that where things aren’t gelling for you? Who are going to provide the wider range of differing views? If they haven't contributed to date maybe they prefer not to. The other post you started you left for members to discuss between themselves, you didn’t respond to any views. Maybe what we need are your suggestions. If you reply & share we'll understand why you haven't contributed & have a clearer idea how you think the site could be improved.
One suggestion Flinda is for you to write some posts about things that interest you about our disease?
Many members who follow the posts don’t post themselves but they do get help and information, mostly from a few knowledgeable and caring regulars. They have had RA for some time and know the ups and downs. Most things have been discussed on here. Diets, physical treatments and of course drug regimes, and these can be accessed by using the search box. We don’t want these members to be put off as their advice is invaluable. It would be nice to hear how everyone is doing I agree but we can’t force people to post.
I don’t often post mainly because of another health issue my treatment is stuck as I can now only have a fairly low dose of Mxt and rely on anti inflammatories to manage my seronegative RA.
The odd off topic posts …why not. It lightens things up a bit and can be a comfort .
I read the posts regularly, looking for useful tips. I don't often post unless I have a question. I do think I learn a lot about RA and treatments from this forum.
I note your profile describes you as an introvert and many of us are not so this makes the contributions varied and interesting which I thoroughly enjoy and find soothing in bad days.
I regularly dip in and read. I gain a lot of very valuable information from the people who write on this forum.
I appreciate those that do taking the time and making the effort. If there is something I feel I can add that would help I do, however, I am not a regular writer on this forum. A huge thank you to all that do you are very very much appreciated.
My life is always bursting at the seams to achieve so many things in the day.
I think one of the issues is healthunlocked is competing with Facebook, who have lots of groups for your specific illness. I think healthunlocked attracts a more nature audience, and Facebook a younger one. I do dip in & out, but when I dip in I like to contribute as it’s what keeps this site going. If the regulars didn’t post it would be a much quieter forum and attract even fewer. I notice from your profile that you don’t participate in conversations, so if we have many others like yourself, then therein lies the problem. Create posts on topics that your interested in or need advice with, and instigate change. If you sit quietly along with many others then change won’t happen. I personally prefer it when a poster contributes to the conversation they started, so would be good to hear your ideas on how you think things could change.
• in reply toRunrig01
Good point about the likely age of members here compared to other sites. I find HU very useful yet have never looked at Facebook, Before covid enforced early retirement I did use linked in for work purposes. I’m 60 now and no doubt once my grandchildren who are 8 and 6 discover such sites I may well have a peek at FB 😀
I do not post that often but always dip in & out. Have learnt alot from people who post often.
I dip in every morning from my daily email updates. I for one really appreciate all the long time users who give us their time and experience to offer some solace . I do post questions as and when needed and occasionally reply to a question when I think I have something to add. I also appreciate the “off topic” thoughts too and think this forum is as perfect as it can be. I am about to post an ongoing problem shortly that has seriously stressed me out but I know I will get some advice and even sympathy that will help me to cope. This site is perfect , without the long timer’s who let’s face it , don’t have to reply to posts, it wouldn’t be the same. It’s particularly sad that you have asked a question but not bothered to reply. I’m sorry about that.
I dont post that often other then to ask questions or whinge when I'm having a bad time ( sorry for that😂)
I always read the posts everyday and if I feel I can help I will reply but I an still very new to all this. I appreciate each and every post though as I feel it all helps and each post is very useful.
I like how this group ranges from people that have had it years to people newly diagnosed or a couple of years.
People that have had it years may learn something from us newly diagnosed ie different treatments etc and newly diagnosed learn from people that have had it years through their experiences and tips.
I find it lovely to see people's posts asking how people are or updating people on how they are getting on its nice to know people are doing well. Personally I like seeing picture posts I know there was quite a few flowers on here at one bit. I found that broke my attention of the how much we are all suffering at times.
I'm just trying to say that each post is helpful and may help people in different ways. Something that might not comfort one person may comfort another 😊
If you could say what YOU would like from this forum we could discuss that?Do you want it to be more like Facebook?
More of a social group?
Less emphasis on medical problems?
It's much easier to discuss positive suggestions.
I love this group its been invaluable to me being diagnosed in 2020, but I only came across it as a fluke, I get email notifications every day but for some reason it's always a day after any posts, however, I think the question you asked is how can we attract more users & help more people, I wish I could answer that, the only suggestion I can offer is if rheumatologists gave information about NRAS at diagnosis x
The way I see this forum is like a table at a reception. Some may choose to take what they need from the smorgasbord of buffet available, be this information, advice, support etc. People have a choice to seat themselves a table where they can talk and discuss things, some may feel more comfortable at a smaller table, some may wish to sit at a table for one and simply observe. To me all is ok as we are all choosing to participate in the bigger event at a level we are more attuned, comfortable with or able to. Some may be satisfied with what they have on their plate and don't feel the need to return to the buffet, some may take their time and then return to replenish their plate, some may need to dip in and out and take small pieces from time to time and some may need extra to satisfy a hunger. Some may take more so that they can simply share it with others. I appreciate not everyone may feel satisfied and I see you are asking others to share their suggestions, but what about your suggestions to make this fair and balanced? If you want to make suggestions to a menu in a venue they need to know so to speak and while it's ok to ask others what they may prefer, if you wish or prefer for something different on the menu it's best to mention it.
Take care and kind regards, Pip x
Thank you for giving my question some thought and sharing with me. It's very much appreciated. From reading all your contributions carefully, the consensus is very much in favour of no change, as it's working well without the need for any improvements. This includes those who do comment regularly and those who don't. So, that's great news. For me though, there's far too much back ground chatter - yes, the off topic is very much light hearted and provides a welcome break for those who need it. It's just not for me, sorry. I also feel there's an underlying expectation (which comes through in certain comments) that contributors should conform to certain ways of doing things, as though there's an accepted culture built up over time which is great if you "fit in" but not so great if you say anything which might not fit. I find this a little intimidating, so don't contribute. Quite a few comments have asked me to share my suggestions, in quite a forceful way and checking up on me. Again, I'm sorry if I've upset anyone - this was not my intention at all. I don't have any suggestions to make because the majority of the comments on here are happy with the way things are and I don't want to attract anymore critical comments towards me. I'm not trying to force anything on anyone. I guess I'm in a minority, so I'll bow out. Again, many thanks for all your contributions.
Thanks you for your general response Flinda. I admit I don't understand how we can be considered intimidating, or there's a feeling of needing to conform, to fit in, unless something is being lost in communication. Anyway, it's a pity you feel it's not for you but you're welcome back any time.
Agree with you. x
I think you are right that there is a general “culture” on this board - but it is quite general. Here the debate tends more toward conventional and mainstream-alternative treatments, unlike some boards such as the Cure Arthritis one. So stuff that is more evidence based. However calm discussions about the alternative-alternative options do happen, just not proselytising stuff. I think that’s fine as there are other places to debate other areas.
But perhaps rather than thinking people are “checking up” on you, you should consider that perhaps it’s just wanting to get to know you?
I think if you join a group and then decide it’s not the group for you then it’s ok to leave - you need to realise though that there’s nothing wrong with the group - it’s just not the group for you.
I’ve joined and left quite a few groups on HU - there wasn’t anything wrong with them as such - just that they’re not for me.
I m not sure if it is poor etiquette on my part or not but I haven’t ever commented as I’ve left - I’ve always just left - either because I got the answers to whatever question I asked or because I just wasn’t on the group’s wavelength.
For me this group is just what I want so I’ve been here for quite a while. I joined HU for Thyroid U.K. and within a couple of years I developed inflammatory arthritis, followed by osteoporosis, like I said I’ve tried several other groups since 2012 but the groups I’m with now are my favourites. I’m sure you’ll find the right group for you if you keep looking Flinda.
Just to say good luck and wish you well in what it is you are searching for Flinda. I hope that you will stay but will understand if you feel this is not the place for you. It took me some years to post as I used to read quietly in the background, but after the support I received from my first post this gave me the confidence to write another but also hopefully to reply to posts share my experiences, offer support to others too. I cannot thank people enough for being a lifeline to me especially during the pandemic, coping with my RD and other health issues, bereavement, shielding and having to move house on my own during the lockdown. I hope that in return I have been as supportive as I can be to others and in their times of need too. We all come from different walks of life and all have our own stories to tell and I am sorry if you have felt people have been forceful in asking you to share your suggestions of what it is you would like to see. Perhaps people are asking as they want to try and understand, show some support, encourage or are interested in what you may suggest. Get to know you even?Anyway take care and I hope that you will find a place that best suits your needs be it here or somewhere else. Warm wishes, Pip.
Pip you have always been very kind, caring and supportive to others - no matter what difficulties you are experiencing. I admire that a lot. Please keep doing what you are doing!!😉😊xx
Bless you Flinda. Don't leave us, pop in sometimes and see if there is anything helpful to you. Take care and stay safe, Knip.
• in reply toFlinda
I think the more the merrier is the best approach and naturally leads to diverse views - so hope to hear from you again. 💝 💐 xx
Private message bullying should be reported. That’s certainly not on. Wasn’t aware that it went on..
Knip• in reply to
I wasn't aware of this either. I think it's appalling.
Hi. I rarely post, but do reply to others’. More people ‘like’ than respond, and that is fine. You don’t have to do anything. I have had a few venomous replies on here, but for the most part it is very cordial. Clashing of heads (I think) is two people simultaneously having a bad day. We are people.
Do what you like! You don’t have to answer to anyone! [I am not telling you what to do btw 😀]. I personally love the breaks, with people posting pictures of flowers/ outings/ or a certain make of snack 😍.
I agree with CripLady, nobody should be Private Messaging anyone, never mind new members, & giving them the third degree (not sure exactly what you mean but it implies being told to toe the line). If you have evidence of this Ajay it should be reported, as should anyone who is contacted by PM not comfortable with the content, the Report button is there for just that, so you can feel safe within the community. If not it will continue to be a problem.
I really like this community as it is. We need the - I was going to say older member but I’m not sure that’s right - we need the members with years of experience with RD but because they have years of experience it means they’ve probably been using HU for a long time and of course we’ve got to know a bit about each other’s lives - our trials and our joys.
I think of this group as extended family that I’ve never met - some times we come on looking for help and advice, other times we come on to have a bit of a grumble, other times we come on for a laugh and a giggle. I often come on just to see how everyone is doing.
I think you’ve got to give any group you join a bit of time to start with, there’s nothing wrong with being in the background and absorbing all the information floating around the group until you feel that you’ve got something you want to ask or something you want to say.
I’m not even sure how you can get a wider range of differing views on a condition that probably affects most people in more or less similar ways and is treated with similar drugs, that I’m sure everyone hates having and most people are in varying degrees of pain.
I’ve not been on here as long as many and my inflammatory arthritis is absolutely nothing compared to that of a lot of people on here but I find it a really good, friendly, kind, supportive group, I’d hate to get to the stage where you couldn’t / weren’t allowed or worse still were frightened to post something that might be considered ‘off topic’.
• in reply toFruitandnutcase
With you on that!
So it's been going on that long. You weren’t to know otherwise Ajay but it's not something that should be happening, if it still is. I do hope if it happens to any new members they will use the Report button. We need to keep the site safe for everyone to use.
I look at the chat regularly, usually home in on posts that are relevant to me. I do reply to posts, but if there have been a lot of replies similar to what I would say I don't as it's already been said.
All the same, those sorts of questions could be asked in the open, especially if, like you, others it's happened to feel they've been pressed into giving more information than they may be happy giving when newly joined. I would have found it off putting had it happened to me.
I have found this group fantastic just as it is. I’ve received so much information and encouragement via both older and newer posters. Please keep it up.
Just remembered, Nadine-NRAS was raising similar’ish questions recently, so perhaps message her
Yes I got a private message about a post. It did feel odd. The assumption was that I didn't know what it was like to be clinically vulnerable. My view is perhaps different to some folks, but since I'm pretty much in the same boat as most people here it was a bit weird to have it pointed out. I don't think poster was deliberately being unfriendly. However, it felt a bit cliquey. Then most forums do.
Indeed. Not the end of the world, but it is off putting. I don't come here much, although do look things up from time to time, and find that useful. I don't do fake book or any of those platforms.
I’m a dipper! I dip in and out depending on how I’m feeling and how active my ra is. I usually come here looking for info, support or to ask a question. For me personally, seeing the same names pop up over and over is really comforting! The board is also used daily so it’s always relevant to the day and ways of the world. I don’t think there’s any issue. If you want to attract new blood perhaps encourage the outpatient services some more. I knew of NRAS from my initial hospital visit however I only knew of health unlocked from google! Perhaps promote it on the NRAS fb page. I for one think it’s a great platform and am more than happy with the ‘sitting ducks’ 😁
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