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Sjogrens Topics => Living With Sjogren's => Topic started by: kathylee on April 29, 2008, 11:19:15 AM

Title: How do you get your Kids to understand?
Post by: kathylee on April 29, 2008, 11:19:15 AM
I just moved and it was as hard as you all can imagine. When I asked for some help after to get some things from my car my 30yo daughter made the remark that I could do more than "I think"'s in your mind. Now granted she had a baby on 4-16 and it was an at risk pregnancy...and she is an " in your face" kid but I told her to stop when she kept on with the subject, 3 times, finally all I could do was hang up. I curled up on my bed and cried...
If any of you have experiences, information, concise data I could use, I'd sure appreciate it.
Title: Re: How do you get your Kids to understand?
Post by: Tricia281 on April 29, 2008, 11:52:08 AM
Hi Kathylee,

I'm so sorry your daughter is finding it hard to understand your condition.  I can't think of a sure fire solution to it but just wanted to offer my sympathy.   Perhaps once her hormones settle and she is in a routine with the baby, you could try and have a chat with her and offer her a simple brochure to explain Sjogren's.  Chronic illness can be isolating in so many ways and those closest to us find it difficult to understand what is going on and so we have to be the ones that are understanding. 

I have 2 grown kids and my daughter lived with me the first 2 years of this when I had an onslaught of symptoms  and a really bad and scary time.  She is great, can tell by my face (not sure what she sees) as soon as I begin to feel bad and can almost read my mind in helping me!  I don't know what I would have done without her.  She reads up on everything and is a great wee advocate for me.  My son knows I am 'sick', is sympathetic but doubt he could repeat what I have.  He's busy with his own family but will try and help if asked!  My hubby is helpful and tries to be understanding but I know he has a hard time with it.  He says I'm not the same kidding...and sometimes he will have to just 'get away' which saddens me sometimes but then it's not him that's ill!! 

Hang on in there and keep a brochure handy for the right time,