Hi everyone, just a quick mod-type posting for general consumption.
In recent weeks we've had quite a few posts on sensitive and/or alarming subjects which have caused people some distress.
Please could everyone bear in mind the following: whilst there are a lot of ""experienced"" brittle asthmatics who are used to regular severe attacks, ventilation, IVs and nebs off all natures, colours, sizes etc. - and are quite comfortable talking about their experiences - please, please bear in mind that these types of stories can be extremely alarming and distressing to less experienced board users and newcomers (and even some of the more experienced and old-time users!). Take a little time to re-read your post and reconsider how it may come across to others on the boards.
I think you have raised an interesting point-if someone has had a bad attack ,at what point does providing information for others cross the line into ""scaring people"" -what might be scary ,admittedly,to some people may provide some vital bits of info for others- where do you draw the line?
I think it's a very difficult subject - and one which, as Cathy says, needs to be handled with a great deal of sensitivity.
In an ideal world, we would be able to discuss anything and everything on here, including the detailed ins and outs of ventilations, ICU and so on. However, I think we have to remember the broad potential readership of this open forum, which could include children, parents of asthmatics, newly diagnosed asthmatics, and people who have been through some very difficult experiences themselves relatively recently.
In particular, anyone who has been newly diagnosed with asthma and who has turned to this board recently may have gained the false and frightening impression that brittle asthma, nebs, hospital admissions, ventilations and the like are commonplace experiences in asthma, whereas in fact those of us who have to undergo these sorts of experiences make up a tiny minority of asthmatics. I can imagine that if I had come to a board like this when newly diagnosed with my (initially quite mild) asthma, I would have been absolutely terrified.
I consider myself fairly hardened to bad 'asthma experiences', having had a fair few myself and having worked as a doctor in acute medicine for some time. However, even I am occasionally upset by some of the things I read on here, whether because I am feeling personally vulnerable, or whether because the experiences being described resonate particularly with memories of bad times that I am struggling to come to terms with.
I agree that sometimes sharing bad experiences can be useful, and indeed vital. Severe/brittle asthma can be incredibly isolating. Before I came to this board I had never had the opportunity to speak to another asthmatic who had been ventilated, and it meant a great deal to me to be able to do so and to find that some of the experiences that I had had were not ones that I was alone with. I think, though, there is a place for the sharing of the vivid details of such experiences, and I don't believe that a public forum, that can be read by anyone, is that place. The board provides the facility for us to send personal messages to each other, and when we exchange PMs we can also give people our e-mail addresses or MSN screen names if we want to have further conversations. Personally I think that those are more appropriate ways to discuss some of the more in-depth issues.
If people do have particular questions or comments about some of these more dramatic experiences, perhaps they could consider at least posting a warning in the topic heading, saying that they are making reference to ventilation or whatever. And, of course, re-reading the post, as Cathy has said, and trying to consider how it might affect others.
I hope I haven't added flames to the fire by these comments, but I wanted to add my thoughts, as one of the 'old-timers' of the board who has been a little upset by recent posts!
I hope I,m not being too macho about this but unless someone is deliberately ""over-egging"" their stories or simply making them up,surely everything else is fair comment -isnt that what forums are for??-Personally,I wouldnt want anyone to be distressed by anything that I post and I would almost certainly accept a moderators decision if they decided to withdraw anything I posted but arent people just telling their own experiences?,I,m sure they dont mean to scare people.
I would disagree that anything that is true is 'fair comment' - I certainly don't think it's fair to go into excessive amounts of potentially frightening detail in posts which contain little or no warning that they might be distressing. Some of the details that people include in posts do not seem to serve any purpose or be targeted at providing specific information or clarifying specific queries.
Although the things that people have said might well be true to them, in that they are a genuine representation of their experience, they certainly are of dubious wider 'truth' and relevance to the board, as the experiences they describe are not typical of most asthmatics. Whilst it is often valuable to be able to discuss some of the more extreme experiences that we may have had as asthmatics, I believe that we do have a responsibility as a public forum to give a reasonably accurate representation of what a newly-diagnosed asthmatic may reasonably expect, and to be careful when we post that we are not gratuitously frightening people.
Imagine how you would feel, if, having just been diagnosed with asthma for the first time by your GP, you rushed home to look it up on the internet and the first thing you stumbled on was descriptions of Intensive Care, ventilations, and CPR. For the vast majority of asthmatics, that is not going to be their experience, and I don't think it is fair that we should give the impression that it might be. Of course, we have to encourage people to take asthma seriously as a potentially serious (and indeed potentially fatal) condition, and it is sometimes a difficult balance to strike. I do think, though, that sometimes we fall on the wrong side of the line.
I include myself in these comments - I am sure that I have said things, occasionally, that could be frightening or worrying to others, and if I have, I apologise. I like to think that these days I would chose a more appropriate outlet if I wanted to discuss potentially difficult topics in detail, such as a personal communication with a friend who I know has been through similar things.
One thing did occur to me, apart from the idea of preceeding potentially frightening posts with a warning in the topic subject. I wondered whether it might also be possible and appropriate to have an introduction or FAQ in which it was specifically stated that this board tends to attract a disproportionate number of severe asthmatics, and thus gives a rather biased view of what asthma can be like. It would also be good to point out to any newbies that the vast majority of people with asthma will be almost completely controlled with the right combination of medication.
Once again, I don't want to cause offence or worry to anyone, but I do think our Mods are right and we do have to think carefully about what we post.
Take care all
Em
Allow me to draw an example from the not-so-distant past.
A few hours after the 7th July Tube bombings in London, the BBC showed pictures of an ambulance being unloaded outside one of the city's hospitals, with a bomb blast victim inside. In clear and obvious view and focus, CPR was being performed on this person.
This was true. This was fact. But it was completely inappropriate and horrifying to see that portrayed on television news. *I* found it completely inappropriate and horrifying - along with many thousands of people who complained to the BBC within hours. And I am someone who is not at all unfamiliar with performing CPR and seeing CPR performed.
An extreme example, perhaps, but it illustrates the concept.
Hi
I hope you don't mind me adding my twopence worth to this subject. I usually don't post but read daily and pm a couple of people. I have been diagnosed with brittle asthma for 3 years and, from reading posts regularly I never feel that my attacks are too severe. I end up in A&E almost every month needing O2, nebs, IV magnesium etc but, I think because it is quite common place on here to talk of being in HDU/ ITU etc I play down the severity of my attacks. When my consultant comments that I had a bad attack ie couldn't talk in sentances etc I don't agree. The point I am trying to make (rather long-windedly sorry) is that as well as scaring some people with experiences, it is possible to lead them to underestimate their illness and fail to seek appropriate treatment early enough.
evening all.. there's a few of us up late tonight (well- early, perhaps would be more accurate!) the delights of nocturnal asthma, or in-patient insomnia!
just been having a read thru this thread, (and having re-read my posts over the last few weeks) and wanted to say a few things...
i'm hazarding a guess that I may be considered to be one of the culprits, and if so I'm sorry for any distress that I may have inadvertently caused.
i've found the camping thread on the boards a very useful resource, both for advice and information and in hindsight, as a 'venting' channel. as a relatively new brittle asthmatic, going thru some quite traumatic times recently, it has been very useful to be able to let off steam about what has been happening. i've not got any local contacts with any personal experience of brittle asthma, so there's not really been anyone to talk to who understands- it is bad enough when most of the doctors looking after u in acute attacks (ie not the respiratory ones) are freaked out by the rather unusual management required, but also struggle with dealing my being a junior doctor myself and therefore a friend and colleague who can be critically ill in front of them.
however- having re-read what i've written, I can fully understand where the previous posts in this thread were coming from- and appreciate that this is a totally open forum, so private messages to willing individuals would be a more appropriate channel for this sort of communication in the future.
apologies once again, hope u all are staying well, and escape wishes to those in need...
ksd
Bluejam - I agree that fora *should* be a place for fair comment, but don't agree that this means you can post about *anything* just because it happened. I'm sure the doctors on this board could scare us all witless if they got the inclination by recounting some of the things that they've seen.
I don't think it's been mentioned yet, but everyone also needs to remember that this board has no lower age limit for access; children as well as adults use this message board, which is why we sometimes have no choice but to edit the more graphic posts.
Thanks Cathbear, I agree that people should think about what they post and maybe put a warning on their messages before they post. I also think it is up to us to make sure that we don't read those messages if we are feeling vulnerable as people have a right to be able to talk about their experiences.
Is there anyway to have a discussion forum where people could talk about stuff specifically related to brittle/severe asthma? People could be given a warning that they may find things in those topics distressing and might not want to read them. Also stating that the majority of asthmatics can be well controlled on the right medication? People understandably want to be able to share these experiences but it also has to be balanced with people newly diagnosed and children are coming to the board and could be frightened by what they read.
Sometimes I can feel like I shouldn't post on this forum because I am mostly well controlled and I am too well to be here. But other times I think that being around may help others who are newly diagnosed to see that there are people who have got on the right medication and are well controlled. Its always going to be difficult as people are more likely to come to the forum when they are struggling to get information and support (as I did) and not post when they are well.
I hope I didn't ramble too much!
Beth
I am glad all of this has been brought up. People have mentioned many times that this board draws a disproportionately large number of brittle asthmatic vs. the rest of us. I myself have come to know this, and so I try not to let myself get any distorted impressions about asthma from this. I go by how I feel and by what my doctors tell me. Some of the things I read can be a little distressing, and I agree that PMs can sometime be a better mode of communication between willing board members, as sharing this information can be extremely useful and comforting, if it is between the right people.
I just wanted to have my say as one of the non-brittles on here. Sometimes I feel as if I don't really fit in, and I know I don't. I stay though, because it is so nice to have somewhere to talk about asthma with people who actually have it. There is just a whole other level of understanding on this. Thank you Cathbear, and thanks to everyone else who responded so well.
Brynne
I just wanted to say that I don't think anyone should feel that they don't belong here or don't have a right to post here. This is the Asthma UK board, not the Brittle Asthma UK board. I would hate to think that people felt that they did not have a right to post, or that their views and experiences weren't valid, just because they did not have a diagnosis of brittle or severe asthma. We all have something to contribute.
I have always believed firmly that we should all be here to support each other, whatever the issue. I know from my own experience that a new diagnosis of asthma, the first exacerbation, the first time one has to use a neb, the first hospital admission etc can be every bit as frightening as an ICU admission or ventilation is to the more 'hardened' among us. I hope I never forget that the things which now seem common-place to me used to really worry and frighten me, and I hope that I can always put myself in the place of others who are going through these sorts of things, and not dismiss their worries just because they don't happen to have had an Intensive Care admission, and so on.
Let's not be elitist about it; this board is for everyone who is affected by asthma in any way, whenever they need our support. As long as we all post sensitively, and bear in mind the wide range of experiences that we do have, I don't see why the board can't continue to function in this way. I also think that Beth's point, that it is good for people to see that asthma can be controlled and allow one to get on with ones life, is very valid. I know that I find it encouraging to remind myself that asthma does not have to be what my current experience of it is.
I don't think we should try to categorize ourselves (a fairly impossible task anyway). After all, there is always someone who is worse off than ourselves, and taken to its logical extreme, the idea of us segregating ourselves by severity could result in the 'worst' asthmatic (however we might measure that) talking to themselves in a little group of one, because no-one else is bad enough to understand!
These are all difficult issues, that we are currently considering, and I think it shows that we are a mature bunch of people, that we can have such a discussion without it degenerating into acrimony. I can think of other fora where these issues would not be able to be discussed with equanimity. I don't think we need specific rules about who may post where, and what can be discussed - as Cathy says, that would be somewhat draconian. I just think we all need to post with a little sensitivity, and we will be fine.
Take care all
Em
I'll add that, despite being a moderator of this board, I don't have asthma AT ALL; my connection is through CathBear and my volunteer work on the Kick Asthma childrens' holidays.
Hi EmH
I really shouldn't have put it in that way. I have always felt welcomed and supported and have never felt like I shouldn't post. What I should have said is that not having brittle asthma stands out a litle bit around here. Thanks for making me think back on that
Brynne XX
Hey peeps,
I'll stick my nose in here lol, as one those people that does not always use his head when posting, i can see the problem. i think, like has been said that there are a large number of brittle/ severe asthmatics here and i think sometimes what is 'normal' for us, is not for most asthmatics, thank goodness! and could cause distress to newly diagnosed, mild asthma suffers.
i personally have found a number of gr8 friendship from a number of people here and there support is vital to me! For the 'brittles' here, not to groups us, ICU ect are experiences that most of us have had and we should be able to share experience and find support in each other, while bearing in mind that fact that there are people her that could find it distressing!
sorry that is really just repeating what has already been said, but hey! hehe
hope all is well with everyone!
rob
x x x
Bump....
Thanks for all responses so far.
hello,
just to say sorry if I have upset anyone - I have perhaps not always thought too hard about what to post and will try to engage brain a bit more in future.
Also happy to be a sounding board for those who are struggling with scary experiences who don't want to post on the open forum in case they upset folk.
Sarah
I'm going to bump this again, on the back of a recent post from a new member:
""I did read on here a post about how it can flare really quickly and hey needed to go to hospital straight away. I must admit I kept worrying all night, that it would happen in the night, I couldn't sleep very well.""
Thanks, folks, for your comments on this thread; here is a perfect example of why overly-dramatic posts can be a problem. Yes, there is a need for those who have severe/brittle asthma to be able to post about what is happening to them, but there's also a case for moderation.
Cheers,
Steve
(Mod mode)
In light of recent concerns expressed to moderators, I'm bumping this back up.
Thanks for this thred, everyone, I found it really good. From my point of view as a moderate non-brittle asthmatic, I'd say that:
1. This forum is a real blessing. In addition to giving a possibillity to share thoughts and ask questions, it gives you certain balance. I mean, I personally know many mild asthmatics, and most of the asthma-information available is about mild asthmatics. So, here in this forum you can see things from the perspective of the severe and brittle asthmatics. Then you can place your self in this world and say: 'well, now I know who I am. I'm not a normal mild asthmatic as everyone I personally know. Nor I'm a severe brittle asthmatic as most people in the AUK forum. But, I'm someone in between, so I know where I stand in this world.'
I just wanted to say that I'm happy you guys tell about your lives, it also helps us 'inbetween' people.
2. I see, of course, that newbies might get frightened, which would be sad. And of course you always have to think a bit what you write in a public forum.
I see you have this nice habit of writing at the beginning of a message something like ""Warning: I'm going to murmur here!"" so people know what's coming. I agree that similar habit might be good with this issue, too, so people could read it 'with an appropriate eye' or totally skip it if they want to.
I'm happy you people exist here!
The snow flakes outside my window send you their greetings!
-Niccia
Sometimes its good to talk but I think sometimes its bad enough strugerling without having to explain it also. I think a sensitvity warning should be put on post 1st before going into post. I to have put my foot in it before but not about asthma. I realised it was a very sensitve subject to talk about and I should not of posted it.
take care
xx
Hi folks, just thought I would add my contribution! Sometimes I find that particular posters on here make flippant comments about their experiences with brittle asthma and seem to exaggerate their experiences. Guess it's easy to be flippant and make jokes about being admitted when we are so used to the experience. About the exaggerating, you can never prove this but there are people who post about being out of hospital with SATS of 51% and people posting of staying at home using ridiculous amounts of medication and going blue. Either they are exaggerating the truth or they have no education about managing their asthma. Also, how do they manage to post to tell us that they are going blue/grey! Quite honestly, when I am in the throws of a brittle asthma attack, the last thing I would be thinking of is ""Oh I must log onto the asthma forum to tell them I am going blue and that I'm about to go to A&E !"" I would not have the energy to post during an attack.
Thanks for saying that Karly. I'm relatively new to asthma and I must admit, I wondered how people who appeared to be so unwell had the wherewithall to write about it.
When my asthma was uncontrolled, prior to diagnosis, it took me all my time to walk about, let alone do anything that needed my brain cell!
Hugs to everyone who needs one.
Kathyx
I think everyone is indiviidual and what counts as ridulous amount of drugs to one person may be perfectly normal to the next. My son is fortunate to be under the care of a top resp prof which means he on some very silly doses of most drugs. Im sure there would be many who would jump up and down and say I was exagerating which is why i dont really post anymore. I have been told many a time by work colleagues and friends I am flippant about my sons symptoms/admissions but it isnt meant to be flippant it is just that you get to a stage where you cant freak out at every event or you would be nervous wreck.
I think we all have to be very careful about insinuating that people are exaggerating their symptoms or treatment. Asthma treatment is constantly changing and sometimes, out of desperation, doctors will try new and random regimes.
I think Cathbear is right that we should be very careful about assuming that descriptions of experiences that we are unfamiliar with are necessarily exaggeration. I can understand that some of the posts on here may arouse scepticism in some people, particularly if you have mild or moderate asthma yourself and don't know anyone with severe or brittle asthma. Personally, I feel that the vast, vast majority of people on here are posting in all good faith about genuine experiences. Treatments for brittle asthma are often very individual and can be outside of normal BNF limits, which may give other people the impression of exaggeration. Some of us also deal on a day-to-day basis with a level of symptoms that would trigger hospital admission in others; to an extent, we get used to these symptoms and live our lives as much as we can. If some of the things that are posted seem extreme, that is because some of us are living with a condition that is extreme.
When I first started posting on here, I remember very vividly the feeling of relief when I realised that there were others who had been through similar experiences to me. Prior to posting on here, I had only spoken to a couple of other people who had been ventilated for asthma, many years ago. When I first started posting, I was probably guilty of being too graphic about my experiences of ICU, ventilations and so on at times - which was really a reflection of my incredible sense of relief and of unburdening myself about these horrible and difficult experiences. I still believe that being able to do this is an important part of what this forum is about - but the more graphic and potentially frightening descriptions and discussions are probably more appropriately tackled via PM or MSN conversation, perhaps, than in posts on the open forum.
I think those of us with severe asthma also have a responsibility to discuss our treatment appropriately and with consideration for other board users. Newer board users may not realise that a particular treatment being discussed is not the 'norm' for asthma and is not necessarily safe for everyone. I feel that those of us with severe or brittle asthma should be very cautious about discussing our treatment protocols in general posts on the boards - there is too much potential for these sorts of posts to be misinterpreted, potentially dangerously so. Obviously, there is great value in discussing alternative treatments, particularly some of the more unusual treatments used at the severe end of the spectrum, and it would detract from the board greatly if we were not able to do that. I think we all need to be a little bit careful in the way we do this, though, and think about how it will come across to someone who doesn't necessarily know the board or our histories.
I think we have a great community here; it is very valuable to be able to share some of our experiences - extreme or otherwise - and to compare ideas on treatment. We just need to tread a little bit carefully to ensure that everyone's needs are met. This is Asthma UK, not Brittle Asthma UK.
Take care all
Em H
(frantically juggling moderator's hat and brittle asthmatic's hat)
Just a little bump!
Bump for reference.
As I said on camping PLEASE drop this till I either get the yes or no for my right to reply from the web admin !!
It is not fair to carry this on when I have no right to reply !!
Moved from ""camping""; sorry, there's no better way to do this!
--- begins ---
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EmilyH 27 Mar 08 6:30pm 84.66.59.115
Donna, you have every right to reply to comments made on this forum as long as you stay within the bounds of the Terms and Conditions. You don't need special permission to do so.
We've reviewed the comments made on both threads, and I don't think anyone was 'attacking' you. People were expressing surprise and concern and I think the comments were very balanced and reasonable.
If you have concerns about anything specific that was said, you are of course welcome to inform the moderators of these concerns in the usual way.
Take care,
Em H
(Forum moderator)
Edit Delete Message this user Report this post
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Donna W 27 Mar 08 5:43pm 86.130.87.62
For information purposes !!
Well ""Luke"" then but it was a woman last time this happened.
Until I have heard back I am not posting more and I feel that if people don't want it discussing to stop pushing it.
It isn't on or fair to attack someone in public with no right to reply.
Until I either get the okay or not from the person in charge then I suggest it be dropped because it is not fair to carry it on while I cant reply.
I should have the right to openly reply but am waiting on the boss.
Edit Delete Message this user Report this post
#
cathbear 27 Mar 08 12:23pm 194.176.105.49
Luke (Webed) may get a little upset at his gender re-assignment, Donna - LOL!
For balanced reference, you may also like to read the discussion that went on on the ""Sensitive Subjects and Sensitivity"" thread at the same time, which I'll bump up for easy access.
Glad you have escaped.
Cathy
Edit Delete Message this user Report this post
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Donna W 27 Mar 08 9:10am 86.130.87.62
Well after a rushed dash back to hossie I got out late on yesterday
Thanks Kirsten (Hops) and Andrea (Wheezyab) for keeping me going while in - you made it alot easier
I am going to contact the web editor to ask permission to post something in reaction to some of the replies here but will await HER permission firstly
--- ends ---
Would everyone please note that this is a *general* thread, and not a place to debate any single issue. It gets bumped on a regular basis, and does not pertain to any particular event, post, poster or PM.
Steve
(moderator)
This stops NOW till I have had contact from web admin - end of !!
If and when I get a reply I will post the outcome BUT for the third time DROP IT !!
This is exactly what happened before and its happening again !!
Nought new is it !!
Donna, please calm down.
Webed always involves the moderating team in all decisions, and Emily H has quite rightly pointed out that you have every right to reply. As I have pointed out, the purpose of this thread is not to discuss any single issue, it regularly gets bumped and contains some very useful discussion and information.
However, I have also asked that you take any further discussion of this away from the public message boards, as it is not in the interests of the members to discuss this in open forum. Both Bex and Andrea have also asked for this on ""camping"".
Steve
(moderator)
I dont need to calm down !!
Well after reading and re-reading again the T&C's over and over and over I believe I have the right to be upset !!
I didnt break ANY of the terms and got a formal warning for what exactly ??
Stating the truth !!
So what are we actually MEANT to lie now !!
Unlike some of the replies and insutations flying back ""AT ME"" since my post !!
I have emailed the web admin (luke) and hopefully he will get back to me when he notices the email because this is not the first time similar has happened but it will be the last !!
But until I have an answer from admin ""My considered and typed reply"" will stay fully unposted !!
I will email him again tomorrow until I get some form of communication from him !!
I do not find it appropriate for any of this to be said in public but it continues to be and I am getting text messages over it and its enough !!
Drop it totally now !!
Donna.
You have now been asked twice to take any discussion regarding this into either PM or email.
You have ignored this.
Your posts are aggressive and you seem to be under the impression that attempting to shout down the moderating team is acceptable behaviour. It is not. It is not acceptable to be as aggressive and threatening as you have been in your last two posts towards ANY message board member.
None of the moderating team posted denying the veracity of the statements you made the other night. In fact, both myself and EmilyH deflected posts from others suggesting that you may be exaggerating. We both stated that brittle asthmatics often have unusual management plans. However, you don't seem to have taken this on board.
There are an awful lot of people on this board for whom asthma is a new and frightening experience. As moderators and doctors, we have a duty to ensure these people do NOT gain an entirely warped perspective of asthma. It is also important that people are not unduly worried or distressed by things they read here. Hence the origins of this thread, and the consensus was that such topics as death, details of ITU/HDU experiences and unnecessarily graphic details were NOT appropriate for this message board. Ideally we'd like a separate section for sensitive subjects like this, but at the moment we don't have one.
I bumped this thread yesterday to make sure you had read the discussion, to make sure you were NOT under the impression that we thought you were lying. We have at NO point said, or insinuated, that. Later, Steve removed our posts from Camping and re-posted them here in order to take this discussion away from Camping. You seem to have construed that as some sort of personal attack. I am not entirely sure why. You complain that you have no right of reply, yet you have already been granted explicit permission to post. By your last sentence in your post, you seem to wish to dictate that no-one replies to you at all, despite your veiled comments. I am afraid that this message board is fully moderated and will remain so; there has to be some kind of application of rules else the entire place would descend into anarchy. I apologise if you don't feel this is ideal.
I suggest you reconsider whether this message board is the right place for you.
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