Having just read another post from a fellow hearty, asking for help with terminology..... well I'm really quite saddened. The replies to this request were great, supportive and encouraging., as we are always reassured they will be, after all we're all in the same boat, so-to-speak.
What we have lost though, is the confidence to post the help that is being asked for. Having followed the recent admonishment of some really trusted, supportive and helpful hearties, I'm left wondering...what is the point?
I received ,15 months ago. and I can't over emphasise this, the very best support I could have asked for, when my, and my family's lives were turned upside down, following an 'out of the blue' major heart attack! The numerous posts that reassured me I wasn't alone, explaining the many technical 'jargon' terms in a far less frightening way, was of immense comfort. I think most of us have had to rapidly educate ourselves on conditions we could have quite happily have gone through life in blissful unawareness. We are not alone when we have the support and help of others, but the way this place is becoming, with friends not allowed to speak freely, well I'm aghast. I don't see why I should be feeling it may be better to leave, after all I owe so much and I want to be able to give back, to help, if in only a small way, just some of the comfort I have been lucky to have received!
Please let us just move back to actually helping each other, when we need it, when we ask for it and when it is really necessary. As our newer hearties may not realise what they need, we, having gone through... going through these awful life changing experiences may possibly see with more experienced eyes what may be actually needed.
I'm not medically trained, but this are my thoughts and feelings on the matter!
Stay well fellow hearties...
Written by
Cruiser25
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I feel the same way, it's a real shame to be honest.
I've a background in pharmacology and used to offer some information on various medicines, under the disclaimer of not being a doctor of course... but I'm not keen to do this now because of the changes in the atmosphere.
From what I've seen the social post has turned sour as well... couldn't even manage a week.
People's experiences and accumulated knowledge were so beneficial here, and I'm afraid we're maybe losing that.
I joined in January this year. I have watched it go from being what it felt like, a helpful, supportive and informative forum, to basically what feels like now, a bit of a shambles in a short amount of time. I’m concerned that when I do post something, I won’t receive a useful response because people are afraid to comment and a lot of the comments have turned into “better to speak to your doctor or cardiologist”. Although that’s a fair response, due to my heart condition being niche and my GP and cardiologists not always being comfortable to advise or provide adequate support for me, I rely on people’s experiences on here to shed some light on my specific concerns where they can. But not many of the responses seem to be tailored to the OPs query anymore, they are now more vague and less specific.
At the end of the day, it’s supposed to be a support forum and unfortunately, I don’t feel like many of us are getting this anymore
I could have written exactly what you have.I've been on here 6 years and it was such a comfort in the worse of times saw me through the many heart related problems I had and as time passed I was able to help others with my experiences as they have helped me.
Now it has changed and become as you discribed so frivolous and not what people who are ill or scared are looking for.
They just just want reassurence and advice .
hopefully it will return to how it always was and the people involved will stick with the chat site
What's happening I'm confused. Good morning, ive been here for a couple of years and have had the most amazing support, information & references to information.
I'm here because of my 16 year old son and have literally been floored by his two diagnosis. The guidance provided here has enabled me to understand and ask relevant questions at his appointments. So again I'm confused as to why there are post which are saying no medical information or guidance can be given. If you cannot get guidance from the people who have lived experience of heart conditions, as to the text book information which some Dr's provide then what is the point of a support group.
I hope I have got this wrong and we can continue to support each other with advice information and virtual 🫂.
From a very thankful mum of a brave heart warrior ❤️
The thing is, when I was ill and scared and not interested in the chat side of things, I just scrolled through the posts I wasn't interested in... in much the same way I do with the many, many posts on bisoprolol.
I engage with what I'm interested in and ignore what I'm not bothered about. We don't need to segregate groups off.
People need different kinds of support at different stages of their journey. There is room for everyone here. Or at least there used to be.
Absolutely right Captain. I scroll and ignore anything that I don’t feel interested in or more importantly, not able to give any constructive, informed or supportive info to. Now and again I’ll join in the banter and that is good for people too. As it will bring a smile to a sad face and a cheer just for a moment to someone alone, scared, or in a dark place.
I'd say a lot of us feel the way you do I really hope it returns to its previous years of sensibility.
Can't people just not go on the "crap jokes" thread and stick to the serious posts to offer help and support if they don't want to just chit chat? I don't understand why it's such a problem. Just don't click on that thread. Personally I just receive a notification and if its something I'm not interested I just click it off. I'm sure there's plenty of room for everyone. 👍
Your missing some information here the forum was being overtaken by too much chat room chat and not enough heart help all mixed up together so it was difficult to follow the thread that was serious. Admin have now separated the two threads so if you just want to have a chat listen to a few jokes etc you can do that now
if you just want to listen to health related topics you can follow that instead its a win win for everyone
Exactly! So what's your problem having an off topic thread? Just don't click on it then you won't get annoyed at people not discussing heart related issues. I personally am interested in most of the topics but if I wasn't, I just wouldn't read it. Simple
I wholeheartedly back everything you have said Cruiser. I would have welcomed all the support 9 years ago after my HA and by pass op had I known about this kind of site then. I found the understanding of the benefits of such a site from my daughter. Last year she faced the frightening news of Stage 4 breast cancer at the age of 43. She joined a breast cancer support group within days of her diagnosis. The wonderful support , tips and coping advice, and a lot of it was light hearted and off piste, was second to none. It’s the kind of support that family and friends can’t begin to give because it’s experienced and knowledge based. It’s the person feeling the same pain and sickness in the middle of the night as you and understands what that pain feels like. Sometimes it was just a joke between the few awake in the wee small hours that helped her through and she has made some sincere friends. I understand the views of some on this site wanting to keep it focused. But I say to these people, ask the people getting the support. They want correct info yes, but they also want to know they are not alone, if they had the medical facilities to ask these questions they wouldn’t need to ask us and I hesitate to say some of the medical profession to not admit or accept side effects of the drugs they prescribe. They want to admirably only keep us alive, we also want some quality of life. The internet has allowed us to make contact and friends far and wide, don’t then restrict us to our own little bubbles, like the few people meeting in the local church hall, as it was pre the World Wide Web.
Thank you Partner. I just know how the site my daughter joined was very much like the one we try to have and I will stand by my statement that it was a very big part of her full recovery, which I and her husband couldn’t provide.
Exactly, there is no-one better to provide knowledgeable reassurance and support than someone who has personal experience of a particular situation. We can feel very alone without that, as knowledge is definitely all. Laughter is the best tonic, so they say, and can make even the darkest hour a little brighter, something that bare facts and figures cannot do. Friendly and light-hearted banter with those that really understand can be both supportive and encouraging. I am glad to hear your daughter found reassurance which helped with her recovery, and I hope she continues to do well.
Thank you. To date the news on her is excellent. She is a fighter. This discussion has reminded me of her a few months ago with no hair. She called me from her bed looking so ill and so poorly and all I could do or say was “Chin up chicken you can do this”. Although I knew my my words were of some comfort, as they came from her mum. A lady on her site a week ahead in her treatment said “Chin up chicken we will wear our big girls pants together and make it through this” those were the words that got her up out of bed and fighting. They cried together and they laughed together virtually for months. The lady lives on the other side of the country and they have since made the journey half way to meet each and celebrate their respective recoveries. I need say no more
I am so pleased that you have voiced this. Being a ‘Hearty’ like you, after having had a CABGx4 smack middle in the Covid Lockdowns, I was rushed into hospital with the minimum explanation and came out with even less. There was no face to face contact, no rehabilitation only phone calls. Until I found this ‘forum’ I felt that I didn’t have any support. I am not blaming the people working for the NHS. They do the best they can, and believe me, having been back in hospital with a fractured spine, I have seen the deterioration of the institution close up. These life savers don’t have the time to explain, console or empathise. They are run off their feet, overworked and underpaid.
For that reason, we need to help each other and if we can do that through this site, so be it. This support is so important for all of us, being experienced or a newby. Our mental health, fears, scares and understanding needs support from anyone.
Keep it up, even if you just read the posts once in a while or are a regular contributor. I value everyone’s opinion, advice, and share in this.
I can’t say that I disagree with some of the points you’ve made, and I have noticed some of these things myself which has also left me confused in terms of what type of social content should, and should not be allowed to be posted in the main forum as I was under the impression that all social content/topics should now be posted under the social thread.
I personally, though being a fairly new member still, did not have an issue with social topics being posted in the main forum because I find it very easy just to scroll along if there is nothing relevant to me. This way, those who are looking to chat on social topics or discuss things un-related to their heart condition may do so as I appreciate everyone is at a different stage in their heart journey and are looking for others to chat with to perhaps assist with loneliness, depression, anxiety and ultimately, not feel like they are alone in this journey of theirs.
However, you seem to support the idea that a separate social forum is not needed. I am one member that voiced this on the thread yesterday. If the social thread is creating chaos, a blame culture and the use of foul language, and evidently not working too well, where do those who genuinely need someone to speak to off-topic go to? Is addressing issues with one’s mental health not a part of the support which this community is supposed to provide? I can think of one member that logs on just so that they can see a joke or two, or engage in some lighthearted banter because they may not be able to leave the house whether that’s due to their mental health issues or their heart condition.
If there is no social outlet on here in any capacity or form for those hearties that are simply just looking for a break from their heart troubles or family members heart troubles, and it is strictly used for just heart related content, I’m afraid that this forum may not be around for much longer and we may lose a significant amount of members.
Do you have any suggestions on how we can accommodate for everyone? As there should be space for everyone as Captain_Birdseye has mentioned and this is why I support a separate social forum to not only maintain the peace, thereby avoiding or limiting the chaos, but to hopefully address the needs of those hearties who merely just want to celebrate their small achievements, discuss what they saw on the TV last night, make jokes, and so on.
Yes, some have mentioned take it to Twitter and Facebook and although I’m familiar with those platforms, I presume many on here are not and therefore, this idea does not appeal to them. Does that mean we push them out because they aren’t somewhat tech savvy? Why not accommodate them on here, a platform where they are already very comfortable and familiar with. Having to deal with a heart condition is already difficult, adding this to the mix would only increase their anxieties.
I’m sure there are a few who may read this and not agree, and that is absolutely fine. I also want to add that this is no way a personal attack on you either, I just want us to all move forward from this in a way which is accommodating everyone’s needs as best as possible.
I did note (in my mind) that you are not against the social thread but as most of us have gathered from last night, there is some unrest on it which leads one to think that it is not being moderated as effectively as it could be. The thing is, if BHF or HU do not create the separate forum, who will, as you say it’s not their responsibility.
I know members have previously written to them with the hope of finding a solution, and I believe the social thread was the outcome of that.
Perhaps, you are right and maybe a social forum for all diverse groups is the way forward.
We will have to wait and see what the outcome of the social thread, and potentially the idea of a future social forum may be once the moderators or HU decide to address it.
Very well said Cruiser25 my life and my families life was also turned upside down 18 months ago and my goodness I have Struggled and battled and if it hadn’t been for the people on this site i don’t know where I would have been, I didn’t post for at least 12 months but reading and looking at answers gave me comfort and yes confidence too .
18 months on and I find myself back doing some of the things I love it’s the new me not the old me and I can accept that too, some lifestyle changes and tweaks as I like to call them.
I hope all you lovely people stay here and keep shining with your positivity 😊
Surely there must be some way of making all elements of the forum work without any of the ongoing disputes?
May i suggest there appears to be a need for:
(1) Main Forum
- Serious questions, worries and concerns do need be given serious answers & I concurr there should be rules around the way such queries are responded to (I.e. that medical advice is not given)
- Some empathy to be provided for where others don't have the same symptoms & queries can't be answered by forum members .... even if just to encourage them not to keep worrying but to raise the queries to their medical teams. Sometimes with appointment times being so short (& difficult to come by) & the "do as you are told approach of Consultants" people do need to know / be reassured that it is ok to ask questions of the Consultants
(2) Recovery and progress information, stories & updates
- Seeing other people going through similar experiences to us and making progress in recovering is helpful, but we don't see this without some some social input (such as gym updates) because the serious questions and answers don't appear to cover these topics (or at least not that I've seen).
(3) Social
- A way for quizzes and social chats to take place...because these give people assistancd in coping with anxeity and lonliness, etc often associated with their heart issues ..... Just NOT in one long single stream which make it very difficult to use and follow the posts (that being the reason i believe that the qizz was moved back to the main site- just because it got lost).
Note also that i think ALL posts to which-ever section should always be polite, non-judgemental, tolerant, and without any bullying and / or bad language!
I consider a clap from you Andy to be praise indeed. Thank you x
Have to say I'm a bit surprised at what I've been reading.
I've tended to come and go from the forum since pre-pandemic and in that time there has always been room for the social element on the board, so why the big fuss now.
Trying to utilise a single post/thread for non-topic as is now happening, will only tie people up in knots, which is already occuring as far as I can see. HU simply isn't set up to accommodate postings of hundreds if not thousands of responses. It's haphazard non-linear programming will not work, and could create cliques
I'm on football forums, which are set up for linear posting and they're straightforward to follow, but, they can still become difficult for mods, when the bitching starts.
Members come and go, that's the nature of a forum like this, members will have very differing opinions and unless they learn to respect others views it will cause problems. Its not a free for all, and the concept of why the forum is here in the first place should never be forgotten. I'm lucky in that I don't need help or advice, but, as it stands if I was looking from the outside just now, I'd probably think twice about joining.
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