Originally Posted by
JanW
Your take is very interesting, and I will only add this about your daughter and the forum. When I was first diagnosed and found this forum (keep in mind I'm 45), I had friends ask me whether I thought it was "good for my mental health" to hang out on line with a bunch of people who were sick and saw the worst of this disease. Some people thought that it would "interfere with the positive mental attitude" that I needed to "fight and win my battle against WG."
Later, I had friends even say that maybe I shouldn't tell people (this was funny because it was in the context of one telling me that people around were asking her if I was ill -- I had been shedding weight -- and her assuring me that she wouldn't reveal my secret.") Even later, I had people strongly advise me against going to the Vasculitis Symposium (held about 7 months after my dx) because it would be too stressful.
It may be that your daughter is the kind of person who would not communicate on a forum, but I would encourage you to let her know that we are here for her (and you as well of course). I am so fortunate to have found such a wonderful group of friends, and it has meant so much to me even though I appear "well" and can continue to participate in many of the activities I was involved in before diagnosis. I loved going to the symposium and meeting others just like me (and because WG initially severely impaired my mobility, it was nice to not be the only 'young' person in a room without a limp and cane).
There may be also things that she doesn't want to share with you as her mom that she would want to share here. I in fact won't let my mom or husband come on her (although he could find it easily enough; she never could) because I want to be able to vent without worrying them.
This post is a response from Joy
Jan-thankyou! I definately plan to give her the info as she learns more abt. living w/ Wg. I will phase out & it can be her place to find friends & support. This is a gradual acceptance process for her & there will be a time that she will be here. I agree that she could be worried abt. sharing everything w/ her mom - right now this is still so new to her & it is her treatment that we are focusing on. I am glad you are here! I read your symposium info- that was very helpful. it def. sounded like a good thing that you went. I do think she would communicate on the forum as time goes on. Thanks again for your input.
Forum Administrator
Diagnosed March 2003.
Currently but not permanetly residing in Canberra, Australia.
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