Author Topic: a bit scared - just disgnosed  (Read 7930 times)


  • Guest
Re: a bit scared - just disgnosed
« Reply #15 on: February 23, 2010, 07:53:54 AM »
Unfortunately, I think you'll always see more venting than celebrating here.  I know that when I'm feeling OK, I don't hang out here as much.  I don't need the support in those times, and to be honest, I don't want to think about my illnesses.  When I feel cruddy, that's when I need this board. 

I do like the silver lining thread that's going right now (it's called something like "The Best Thing About Sjogren's"), but I'm usually looking for other people with the same weird problems that I'm having when I come here.  Is it bad that I feel better when I at least know that I'm not alone?  I don't want others to suffer, of course, but it's nice to know what I'm dealing with and other people's experiences have proven so helpful in that department. 

Barbara Ehrenreich recently published a book called "Bright Sided" about, in large part, the pressure on sick people to be positive.  I think that we need to be careful not to push ourselves to be happy about something so miserable, even though I think we all try to be as positive as possible. 


  • Guest
Re: a bit scared - just disgnosed
« Reply #16 on: February 24, 2010, 11:42:43 AM »
Like DragonflyC, I tend to come on here much more when I'm feeling grotty.  Partly because if I am off sick I actually have the time to visit the boards.  I do dip in when I'm well because sometimes other people need good vibes because they're down and they are there for me, so it seems only fair to return the favour.

On the bright side, life can and does go on and you do adjust.  I'd rather not have SJS, but it really isn't the end of the world.  When I feel sorry for myself I often think - well there are people living with far worse things like my friend who has cancer and is currently undergoing chaemo (is that how you spell it?).  Her life is in the balance, for me it's just my livelihood - no contest really!



  • Guest
Re: a bit scared - just disgnosed
« Reply #17 on: February 24, 2010, 05:39:52 PM »
I agree when your down it is good to hear words of encouragement and it does give hope, at least for me I am only just (well just a little) starting to put this into perspective and learning to cope with it.  I have another counselling session tomorrow and these also has been helping.  I think a major factor in helping me cope is coming to this site and hearing from ppl with sjogrens that the diagnosis is not a death sentence, which I originally thought.