Should Certain subjects such as RA and the mortality statistics be censored on this site?

I have just been asked not to raise morbid subjects on this site. I have to say that I am disappointed to have recieved this response but recognise that not everyone appeared to be offended by it.

I too am recently diagnosed and my way of dealing with problems is to become informed/ so that I can do everything I can do deal with the situation positively. Please note positively!!!!

I found it very helpful to have all the advive from others about the steps that they were taking to reduce their risks- ie diet, exercise, and in some cases drug trials.

Had I been afraid to raise this I would not have learnt so much new info. A purpose of Health unlocked or so I thought?. So once again thanks to all who gave me pointers.

Now however I am slightly muddled as to the remit of this site?

I am not sure how helpful it will be to me if I feel under presssure to always be sanitising everything and worried about saying anything that is percieved as less than " positive" by others using the site.

I would appreciate clarification from the moderator as to how it should be used?

I feel very strongly that we all have different needs and although some my handle their condition by not verbalising certain realities - others of us do- and should not I feel be forced into silence.

I only asked for current evidence based facts. I was not wallowing in negative thinking. Far from it. It is only by knowing my situation that I can take some responsibility and control for it. eg implementing all the advice we do have from medical reseach to reduce our risks.

I am sorry if anyone newly diagnosed ( like me) objects or objected to my blogg.

I respect anothers persons right to avoid researching this subject if they find it too distressing. Rather than censor the subject I would suggest that any people not happy with the subject DONT READ THE BLOGG !!

Well no doubt this is my second and last blogg........ Im just waiting for the bomb to go off .....

15 Replies

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  • Hi Sparkle, I myself am not offended my discussing anything morbid, after all were not here forever. I have had RA for 17yrs and many times have thought my end was near as the pain was so unbearable and I wasn't getting any nearer to a diagnosis.

    I hope you stay on the site as we need to talk to each other and help each other, I'm sure if Lyn reads your blogg she can shed more light on it.

    Good luck anyway

    take care

    mand xx

  • Don't be daft! Death is a major part of life and we shouldn't be afriad of discussing it! The same could surely be said of anything posted on this site?!

    Someone, somewhere is always going to be offended by something...if we are too frightened to say things for fear of upset then we would just walk round with our mouths shut and our eyes down.

    It is a subject that bothers me more since my diagnosis and it's helpful to know I am not the only one that feels that way or thinks these things! x

  • I totally agree with you all. We should be free to ask and discuss any questions that we feel someone can help us with, that is bothering . My goodness that sounded muddled. Any rate, I for one am not offended and like Jo says it is so helpful to know that there are others who are feeling like we do. Keep posting Sparkle. Julie x

  • i personally dont mind as in healthcare or life in general death is the final thing, for us all but for some one very depressed or newly diagnosed it can be upsetting.......

  • I don't know what the morbid issue was, but I'd agree with others that we do need to be able to discuss the realities of having RA and changing life expectancy and attitudes is sadly part of it. So yes, fine to ask that blog titles perhaps indicate to very sensitive people that they may wish to skip reading - but I don't think that censoring issues is the answer. I for one think it's more important to try to share info and inform ourselves about the different aspects of RA, physical and mental, as this can help us each work out how to manage this rollercoaster ride we didn't ask to get on.

  • Hi Sparkle

    Meant to add a post here last night but was way too tired so hopped it off to bed!

    Please continue to blog Sparkle :) Your input is very welcome on all matters bright and breezy, grim and morbid. Often the latter are the subjects that people want information on but refrain from asking for various reasons. Providing subject matter is dealt with honestly, factually and with discretion no-one should feel offended.

    I posted a comment on the other thread last night. I feel most rheumatologists would agree that the risk of reduced life expectancy.applies mainly to people diagnosed more than 10 years ago when the lack of medication that could actually control the disease was sparse, leading to long term joint damage and other problems. Nowadays the disease is highly controllable and majority of people live a near normal way of life with the usual life expectancy.

    Sometimes the grim and morbid is a part of RA life and issues such as this will be raised from time to time. None of us are medically qualified and can only comment from experience. If anyone has particular issues about their own disease pattern and prognosis they should seek clarification from their rheumatologist.

    I, for one, don't like this private messaging where who knows what sort of comments are being made behind closed doors as it were. If people want to post, no problem, at least others get the chance to have their say and matters can be clarified; the written word can easily be misconstrued.

    Lyn x

  • i think it is important that we face facts. Recently NRAS published a fact sheet about reduced life expectancy which I ordered and studied carefully. This in turn caused me to go to my GP to ask for a chlorestoral check. I will now keep a careful eye on this (it is good at the moment, which I find reasurring) I imagine most of up want to feel fully informed so that we can do whatever we need to deal with RA. if you prefer not to know, don't read posts like that one -the title made it very clear what it was about. Some people prefer to be ostriches. Me-I want to know as much as possible and that is why the forum is so good.

    Sue x

  • I don't think it is morbid at all. It was one of the first things I looked up on the internet about the condition when I was diagnosed in 2009. I think most of us like to have the full facts! Also to be able to say 'lives can be shortened by 10 years' means that the statistics were done before a lot of the new treatments where in common use - as the people counted must have now died!! I am also reminded that both my parents died 15 and 13 years before the so called 'average life expectancy' - they both got cancer - so there are many other factors in life! I think the more aware you are of health issues, the more likely you are to research the drugs etc, and make a joint decision with your rheumatologist on what is the best way forward for you... obviously with both your current health and future in mind. (EG I'm still on steriods at the moment, but am looking to reduce them as the Humira kicks in. I know this is my aim as long-term steriods can cause other problems.)

    Me, like others - like all the facts and like to know as much as possible which is why I love the forums - as you can learn so much.

    Anne

  • I agree that we should be free to discuss all aspects of RA honestly and openly. If we only focused on the more palatable aspects of RA (are there any?) then we would be denying ourselves the opportunity to be honest about what we're thinking and feeling.

    Keep blogging about the good, the bad and the ugly!

    Ann x

  • This HealthUnlocked site is here for you to share your experiences and knowledge with others and offer support to other people who have RA.

    Topics such as those about mortality will not be censored and you are free to discuss/give information/debate about such topics; as long as they are written in a mature, positive and helpful manner. We try to intervene very rarely – and really only where we feel a subject has been inappropriately (even offensively) expressed to the extent that it may reasonably be considered to cause alarm, offence or distress to others.

    As some of you have already mentioned, we do have our own article called “Why is Life Span Shortened by RA?” which is also available on our website for everyone to see. This article is not written to upset anyone, but it is there to inform and educate people about their disease, and as a charity we encourage self-management.

    Some things are hard to come to terms with when being diagnosed and different things affect people in different ways. Some may find taking medication very difficult, others find operations the scariest part, and for others, talking about mortality and other conditions that may come with RA will be hard.

    Therefore, when writing a blog we encourage you always to consider how your words may affect others who read it; be it laughter or tears.

    Please remember that we also offer a freephone NRAS helpline from 9.30am – 4.30pm Monday to Friday - if you would like to talk about anything and everything to do with RA, or if you just need to chat to someone on the phone who understands your RA, please do not hesitate to give us a call.

    Emma

  • Thank you Emma for your considerate posting on this subject. Education and Information is key for all of us living with RA and if we are able to share our experiences, good and bad, everyone will ultimately benefit.

    Thanks again

    Lyn x

  • Hi Sparkle, I had put thoses thoughts to the back of my mind for a long time, knew about them but just pushed them away, it should encourage people to ask questions about their health. lets be honest here RA is a part of us no matter if its in remission or not it defines us now as well as dictates.

    zimmie

  • Sparkle I for one was not scared or even thought that the subject was morbid, I shared the link with you from Dr Holly John and as LynW says we have to think that this and other issues may come up in a blog but if we share our experiences and support each other that has got to be good, the thought of not being able to discuss this wretched illness with anyone else other than your medical and family team leaves me scared, I want to know good or bad whats out there, and as NRAS Emma has said they have an article on this subject.

    Love and Hugs.

    Tricia x

  • Thankyou Trich and everyone else !

    I really appreciated the link. I would never want to be the reason for any ones distress and so will always try to consider the potential impact of what I am saying but I do think that without becoming informed we can not be empowered

    to fight RA.

    Think its really important that we can feel safe to help and support each other and you have all made me feel that.

    Love and thanks and lots and lots of wellbeing to all who replied

    xxxxxxxxxxxxx

  • ps Thankyou to lynn for coming back to the thread after feeling tired +++++ the other night. Comments gratefully recieved.

    Hope you are a little bit better now xx

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