We are not here to say mine is worse than yours only here to share story's and help each other!

Hi everyone.

I am feeling the need to write my second blog, Ive been away from the computer for almost a week now due to a flare that has left me unable to use my right hand much at all due to pain and stiffness.

However I could not wait to return to this site as you all make me feel better and sharing our storys helps me feel not alone in all off this.

I switched my computer on this morning eagar to read everyone's blogs, only to notice I had a message in my inbox, I went on to read it feeling excited (sad I know but sharing on this site helps me cope) only to find a very rude message accusing me off thinking I am worse off than others.

If in my previous blog or in my little description off me I have made it sound than I am in anyway more worse off than any off you then I am so sorry and I did not intend to do this!

I dont think I have made anything Ive written sound this way, but acording to the message I recive this is the way I am putting myself across.

So I would like to put this clear than under no circumstances do I see myself as worst than any off you, after all everyones RA is different and each day is different again.

24 Replies

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  • Hi, thank you for leaving me a message after reading my Blogg, and now after reading yours am appalled that someone as left you a message like that. I am new to this site and didn't think such people existed especially if they are also a sufferer of RA. I've not read anything you have written before but anyone who as this unbearable illness should know we are here to support each other not in some sort of competition. just ignore them as I'm sure you were just trying to express how you feel, which sometimes is very difficult to put into words.Each day is different that's true, so just be strong today and forget about this message. mandxx

  • Hi, I am new to this site and have just posted my first blog and agree that it has been great to find a site where we can all share our stories and get to know other people who really understand the impact of RA on our lives.

    I am really sorry that you got such a message but don't let it put you off of blogging. We will all have different experiences of RA and very different life experiences. Each person has something to bring to the table which we can learn from, empathise with, laugh with or cry with. Just knowing that we are not doing this alone is the most important thing.

    Maybe that person was just having a bad day like the following quote says:

    Be kind, for everyone you meet is fighting a hard battle. ~Plato

    Take care.

    Ann x

  • Hi Julie

    Sorry to read that you have been subjected to this type of accusation in a personal message. It is upsetting to think that anyone would choose to be so unkind. RA is a large umbrella beneath which we all live; we all have our own problems that are very individual to each of us. What affects one may or not affect another. It's not a game to see who has the most symptoms, the most joint damage, the best consultant! We are here to share our experiences of living with an incurable disease so that we can each learn and benefit from it.

    I think I would be inclined to report it because it should not be allowed to continue. We want this site to be a friendly place where NRAS members are welcomed not somewhere we might live in fear of reprisal for something we 'may' have inadvertently said. I'll be extra careful what I type in future!!

    Try not to worry Julie,

    Lyn x

  • Thanks Ladies

    Lyn I am not sure how to report a message this is the reason I didnt. Do you know how to?

    Ann, I love that quote you are so right I have replied to my message in a kind manner and I will be kind even though this person has not been like you say she could be having a bad day.

    Thanks Mand I enjoyed your blog, and hope to read more.

    Hope you are all having a lovely evening Julie xx

  • Hi Julie just wanted to say sorry you have had this experience but chin up. I am sorry you have so many health issues to cope with. When I first visited my new Clinic after asking to be referred there a lady said to me "why are you here". I said "I have RA". She said in a nasty tone "Well you don't look like there is anything wrong with you". What can you say to that? So you are right some people do think that they are worse off you just have to rise above it. I look forward to reading more of your blogs.

  • Sorry you had to go through this Sharron. One of my friends on the NRAS forum has a wonderful reply to all those who say to her "You don't look as if anything is wrong with you" and it is "And you don't look ignorant"

    Keep smiling xx

  • Actually Julie I'm not sure!! However looking at the Directory up at the top Emma 13 is 'Admin' so perhaps a message to her might just nip things in the bud. It is a shame if one person might be spoiling it for others. We all have bad days but we don't take it out on others!!

    Lyn x

  • It's appalling behaviour and you should report it via message to Admin. Do it, else we all might get one too. I enjoyed your blog and the comments you have left on mine and other peoples - let's get on with it and leave the silly people out of it from now on. There's no call for rudeness here, we are all gentle folk after all :)

  • Well said, i totally agree, we are all new at this and would'nt like to feel anyone would be adding to our woes, why can't we feel a bit sorry for ourselves anyway, its bloody hard and unfair!!! (although I too feel ok at moment) :)

  • Julie - I like your blog very much and I love your profile pic! Everyone is right -- this is a place to be supportive and share our stories. I have been hesitant to talk about how good I am feeling now that I've started on Enbrel because I didn't want to gloat about feeling good! Your post reminds me that we need to share the good and the bad. This is not a competition, it's a team.

  • Cannot believe someone so mean! I thought your story straight from heart and very well written. How judgemental of someone! I think it is great to get your story out, and why is someone reading and on the site if they are not interested in empathising!

  • Whoever left you that message will probably realise from the reaction of us all that comments like that are unkind, rude and totally un-necessary. This blog is an outlet we all need to support one another, not to be made to feel even more depressed. Throw those comments over your shoulder!

  • Hi Julie

    Well what can I say except so sorry you got such an awful message and that I hope having read all the comments you feel supported and able to continue to express your self good days and bad on this site. I agree with everyone's comments, had read and enjoyed your blog, clearly the message sender has their own agenda and does not understand what this blog site is about. Hope you have forwarded msg to Emma 13.

    Take care

    Sue x

  • Hi everyone, first I would like to say thank you for all your lovely comments I am so feeling the love today xxx

    I also recived a reply message appologising for the message and saying they didnt mean to nasty in there message, so I will take that as an appology and rise above it and start my day new and fresh and I wish you all a fab day xx

  • Glad to hear they have 'apologised' to you, so they should have done x

  • What a rollercoaster blog. Yes, it's not very nice to think one of you has been upset by a private message but the messages of support really shows the true worth and purpose of this site.

    We have been overwhelmed by the response from people wanting to share their experiences and support others on the new HealthUnlocked site. The website is all about helping each other and it is fantastic that so many of you want to do this.

    The comments are correct -- if anyone receives a private message that they find offensive or rude they should forward it onto me so we can deal with the situation appropriately and ensure everyone is happy.

    It’s also worth us all remembering that it can sometimes be difficult to express tone in blogs, comments and private messages and even if you are very familiar with the site, you should always triple check what you have written before hitting the send button just to ensure that they couldn’t be misinterpreted. Also, using lots of capitals or ‘flaming’ can look angry, as can multiple punctuation marks.

    Although prompted by something negative, I am glad to see how others have come together to show their support and understanding. I hope that we can all continue to get the most out of this site, and to put the most back into it too. Together we will make sure it stays an enjoyable place for everyone.

  • Thank you Emma. It's reassuring to know you are there looking out for us all. The wealth of information and experiences brought onto the site are amazing and it is great to have this facility to share and support others.

    Glad you received an apology Julie ... the world is a good place once again!

    Lyn x

  • Phew - just caught up with this thread and come in now it seems to have blown over. I am glad to see that there is a way of filtering out twits like that. Thank you Emma. Take care everyone x

  • Thanks Emma! and thanks everyone else for all your lovely comments

  • Hi, Just ignore them, we have all got problems,but it seems as though they have got a bigger one, I don't know what though, cant be jealousy,cos who in their right mind would want what we have. Everyone is different, everydays different, carry on regardless, take care.

  • thanks Nutty its all sorted now and I really dont feel bothered by it anymore, feel a little silly for writting this blog now, the lady has appologized and I am totally happy with that, after all its nice to be nice. xxx

  • All's well, That ends well, Take care. xxx

  • I sometimes think when we are very ill, sometimes thinks come out incorrectly when typed, or often might be interpreted inconrectly, rheumatiod and other conditions and medication taken can cause a thing called brain fog x

  • Just saw this. Crikey. Keyboard warriors are everywhere and we have this in our costuming forums. One particular costuming club is notorious for outrageous online behaviour.

    I'm glad it was picked up and dealt with. We're all here to share the burden, not increase it.

    Take care hun

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