Forum

Uncompassionate Replies to Desperate Posts

Hi everyone

I haven’t been on the forum for a while as I have felt unsettled when reading some of the uncompassionate replies to people who are desperate and at their wits end and looking for help.

Most of us are very caring and kind individuals who like to help those in need of our advice and guidance. I for one over the past 8 years have received a massive amount of reassurance and helpful advice and made a huge amount of friends.

Please think twice before replying to someone who is in dire need of help if your reply is going to be negative as this may make matters worse for the individual concerned.

Sorry to moan but I felt I needed to say something.

Shazzie

Dear Anon

The same Moderators work across the forums. It is unfortunate that you cannot see the work we do in the background to prevent bullying, personal attacks and hi-jacking of threads, but there are many lovely people on the forums who do know exactly what I mean.

Moderators do not ‘turn a blind eye’. It may help to remember that the most ‘hands on Moderators’ are volunteers carrying this task out from home - sometimes we have to leave our computers to work, eat, sleep, live. Whilst we try very hard we cannot be expected to catch every post.

That is where forum users come in. If you see a post or a thread that makes you feel uncomfortable or angry we ask you to report it. Doing this immediately sends us an email with the link to that post, at that point we will immediately review the post. If necessary we will have inter-moderator contact to decide whether or not action is necessary.

We do our best. Without us the forums could end up being so chaotic that every post would have to be pre-moderated at MSNC. This would mean that anything posted on a Bank holiday Friday could not possibly be posted before the following Tuesday - taking away the almost instant replies/assistance that people currently rely on.

Actually - perhaps we do turn a blind eye - your post is anonymous and contains no personal information, as such it is in breach of our T&Cs and could be summarily deleted…but it hasn’t.

Liz [Moderator]

Here here shazzie!

Ditto. Popped over to young people and hopefully helped a bit. Xx

Totally agree Shazzie, my granny always told me - if you can’t say anything nice then don’t say anything!!

But as you say thankfully most people here are sympathetic and dispense good advice!

Shazzie, l have often - over the years - felt the same as you. But sadly thats life. The majority of folk are the most kind and considerate people ever. Always there will be an element who - and l don’t think they realise - answer with quite blunt and hurtful replies. There has been many a time that l have messaged someone to apologise for some of the replies they have received.

With MS - l know most of us struggle with mobility problems and pain. Also many of us have depression - even though we do not always realise it. So when l see a sharp hurtful reply - l always think ‘Oh Dear - they need help’.

So don’t feel intimidated by anyone - the majority love all your posts and you would be missed.

Fx

Thanks F. I really appreciate your lovely words. Means a lot.

I have not been on for a while but I am back now and I promise I won’t be going anywhere and I will try not to be intimidated. Afterall, I have a lot of lovely friends on here, including you!

Shazzie xx

One of the many reasons why I don’t post!!

That’s why I’ve posted this. Something needs to be done otherwise genuine people like you miss out.

Shazzie x

Well said Shazzie. I always thought of this as a nice helpful and reassuring site but agree that sometimes replies can be out of term and offensive not just to those they are posting to but others who are reading it. I feel certain that if I had come on here as a newly diagnosed MSer and read such replies I would not have come on again. So I’m in total agreement with you Shazzie xxx

Awww. I am so pleased you are in support Lisalou. I am glad as I was speaking for all of the lovely people on here not just me!!

Shazzie xx

It’s a great site but I really don’t think people realise how posting horrible responses can affect someone especially it they are already in a bad place- Jemima on the young persons forum is a example of this. She is already in a bad place mentally and physically … The wrong kind of post could do irreparable damage and its detrimental she gets the help she needs. So your post is very much supported hun. Xxx

Hi Shazzie, there have been a few lengthy arguments going on and it saddens me when I read them. I prefer not to get involved when it becomes confrontational. Life for us is difficult enough, with out aggro, eh?

I have, 3 times in the past 4 ish years, that Ive been a member here, been sent messages I dont feel I have deserved. It is easier to play nice or ignore bullying` words. If I feel I have said the wrong thing, then I always apologise. If some people continue to be unkind, I block them from my PM box.

Like in the world as a whole, the majority of members here are kind, supportive and friendly. I have made some really good friendships and value the site greatly…more so as everyone knows I dont have MS (anymore!), yet I am encouraged to stick around…which I do!

I think if posts get awkward, it is best we dont reply, unless we feel so strongly that our opinions must be voiced, and in not replying we shorten the life of an unpleasant post. They can go on for pages and pages, until the mods step in and close them.

It is a worrying point, that new members may feel there is too much hostitily around, which would frighten them off.

Enough said!

luv Pollxx

I agree Poll. It takes a lot to get me riled. I always laugh my way through life and almost never have a bad day.

It is encouraging to see that all the replies to the post have been 100% in support. Fingers crossed the new members will see all the positive feedback and they will then see how nice we all are and how we all look out for eachother.

Thanks for your reply Poll and I hope you are having a good couple of days after your hectic last few weeks. You did have us all in stictches though!!

Take care

Shazzie xx

Good topic Shazzie. I was on the receiving end a while back. Was diagnosed January this year then had the worry/stress of what dmd’s to go on so posted on here. What with being neddle phobic and the list of potential side effects I was so upset,confused and just lost. One reply basically told me to stop whinging and to think myself lucy! I was. being put on dmds so what was the problem! I was devastated and was in tears. I was so pleased to get a private pm from “treek” aka Theresa who was lovely and understood. I wanted to hide, it was bad ebough digesting the diagnosis. I had very dark days and these comments really affected me. I am so glad I have moved on and love this forum. Poll you are fab! And the rest of you guys I know are here for us newbies with great advice. Thankyou again for raising this. Dawn xx

Hiya Shazzie

I agree that people should think a little bit before replying to a post. As with everything in life, people have different opinions, that’s fine but when someone is obviously not coping very well, answering in a negative way is really not going to help anyone.

I personally would much rather not reply, than add to someones distress. There are times when I read a post on here and think that a person needs a good ole slap to snap them out it and in life I can’t stand people who like to wallow in their own self pitty. However I wouldn’t dream of replying to some one in that way on here. I have no idea of who that person actually is and what their life experiences are, so who am I to judge them and their feelings in such a public way especially as I don’t know how a person may feel or react to what they may see as a negative response.

I’ve seen posts quite recently when I didn’t post because I couldn’t think of a positive way to respond so I didn’t post, I ended up reporting it to admin as the original poster was obviously distressed at the negative responses. If everyone decided not to post a negative response, the original poster wouldn’t have ended up so distressed by it.

There’s often some great debates on here and I really wouldn’t want to change that. Just a little thought to how your response could be taken is all it needs really.

Sue

xxx

Awww Dawn. Thank you so much for your reply.

I didn’t know whether I should or not but thought it was time to say something on behalf of all us lovelies on here and there are loads, like you say. Poll and Theresa have helped me lots too as well as loads and loads of more friends on here. Too many to list.

We all worry about you newbies as we want to help and be there for you all.

Thank you so much for your kind words. They mean a lot. Hope you are doing ok on the dmds and I am so sorry you got some negative replies too.

Look forward to chatting with you.

Shazzie xx

Life is good now Shazzie thankyou. Started rebif in May. Not 1 side effect!! Just red site marjs and I am doing the jabs with the help of my rebismart all by myself lol. My critical illness paid out so I can now breathe a sigh of relief knowing as a family we are okay ( not that anything is going to happen -I WILL BE OKAY). I have sensory issues but that’s fine with me. I am alive, it’s not the brain tumour as thought. I am not going to die. (Previous thoughts). I work full tine as a teaching assistant and am back to work on Tuesday. Once again thankyou for caring. There is only do much family and friends can know and understand. Dawn xxx

Hi Dawn - thanks for those kind words (and from shazzie). Ive not been on here for a while as ive not been too well and ive had computer problems (as you can see from my post today!) Im so glad you are feeling more positive and things are going well with the dmd. Teresa.x

I totally agree Sue.

Thanks Teresa. Hope you are feeling a bit better today even if your computer still feels poorly!!

Shazzie