[bunty29]

Hi there - just found this site after hunting on facebook for a lupus group who weren't into marathons!! (with no success)
I found out that I had SLE in '96. I was in hospital for a couple of weeks to try and get to the bottom of what had been wrong with me for the last year.
(lack of mobility, aching joints, low mood, sleeping as if there was a prize for the person who could sleep the most in the world, no interest in food etc)
During a shift hand over, two nurses stood at the bottom of my bed, nurse 1 told nurse 2 that i had SLE and was in for obseveration.

My first reaction was, "great this thing that's wrong with me has a name" - quickly followed by "what the **** is it"

not long after that my consultant said those magic words "we know you have a problem and were are going to help you" what a wonderful man.

So here I am 13 years later still trying to work out how to deal with this, tried ingnoring it but thats difficult when every days starts with a pic'n'mix from my tablet box - the strategy i went for was to try and make sure as few people as possible knew - didn't want to come over as a drama queen, looking back this was a mistake, cause now i'm the one at work who always needs time off to recover from holidays and the staff don't know why
do you think it's too late to "come out"??
Maybe it's time i controlled the SLE rather than the other way round...
it must to good to talk right enough i feel better all ready

look forward to chatting some moe
xXxXx

 

[Katharine]

Hello Bunty and welcome

Your post describes so well what many of us have gone through - denial and hiding our disease from others. I have done those and came to the same conclusion as you, you can't always hide it and hey, why should you say I'm fine with a toothpaste ad smile when you feel like something from the waking dead!

I think that you'll find the forum is a great place for support, advice and simply sharing what living with this disease is without burdening our loved ones or trying to explain the unexplainable to people who simply won't be able to understand. It doesn't have to define us but it is there and we need to deal with it whether we like it or not :wall:

Bye for now,
Katharine

 

[greenhaggis]

Hi Bunty, nice to meet you!

 

[debatat]

Hi and welcome to the site. You have obviously done well to manage the illness so far. I found this site just before I was diagnosed and it has been a huge source of support. It is so friendly and full of great info. Join us in chat sometime!

Deb

 

[lazylegs]

Hi Bunty,

It was nice to meet you in chat today.

The decision to "come out" at work is a difficult one. Employers aren't supposed to discriminate however some do. On the other hand once they know about the problem you might be able to get some accommodations to help you do your job.

My employer knew when I was hired. Hopefully members in the same situation in the past will post with their experiences.

Take care,
Lazylegs

 

[Pink Pearl]

Hi and welcome to the board.
I don't know what to tell you about your job and informing them about sle. I guess it would depend on the job you are doing and how supportive the company is. They can't discriminate against you, but that doesn't stop some. If you are needing time off, it may be the right decision. Whichever, I wish you good luck.
Sally

 

[KarolH]

Sorry I am late to welcome you but sure glad you found us here.

I am happy to hear that you have managed your illness pretty well.

Join us in the chat room sometime.

 

[jocogirl]

hi bunty 29. i've had SLE for 16 yrs & i'm that girl at work also. i've always kept my diagnosis to myself b/c it's so difficult to explain, even though i'm a nurse. i don't want a pity party either. i've told a few people at wk but am hesitant to totally "come out" also. know how ya feel.