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BeatnikChick
08-05-2005, 01:29 PM
I'm having a difficult time trying to figure out how to break the news of my lupus diagnosis to my children. They are twlve and soon-to-be eleven years old. When I first got news from my doctor that I may have lupus (I received my official diagnosis from the rheumatologist on Monday, this week), I very carefully eased into the subject with my son (the 12 year old). He wanted to know why I was not feeling well and why I was going to the doctor so often. I told him that the doctor wanted to test me for a condition called lupus. His response was "Lupus? So, does that mean you're a werewolf now?" :lol:

Given that response, I don't have much worry that my son will take things in stride (as he always does). But I am worried about how my daughter will react. She is an extremely sensitive child and already has a slightly worrying preoccupation with the idea of me dying. Last month when I tried to broach the subject of lupus with her, the aftermath was disasterous. She began having nightmares about me dying and became very, very clingy. It doesn't help matters at all that they are both currently living with their father, nearly 3,000 miles away.

My mother succombed to MS when I was thirteen years old, and her death had a horrible impact on my brother and I. though we knew she was ill and had always been aware that she had MS, the details were kept from us and we were never informed about just how serious the disease could be.

Is there a happy median between giving children too much information and not informing them enough? Has anyone else had to deal with this same situation, and if so, how did you manage it? Are there support groups for children of parents who have Lupus?

reg-tt
08-05-2005, 03:04 PM
Because it is so hard for you to deal with this yourself, as hard as it may be you have to sit your daughter down and talk to her. The Lupus Foundation,has alot of information to help people and family just like yourself. Even all though all but one of my children are grown and I still don't think they fully understand how bad this thing can be. I not even shore sometimes. So I understand I have dramatic daughters also. Check out that foundation you can find it on the intenet. Wish Luck :!: :!: :!:

Saysusie
08-07-2005, 10:26 AM
Hi BeatnikChik :lol:

I agree with reg-tt; it is very important that you children be informed about your illness (but not frightened!). That is a fine line to walk, I realize, but it is an important one. Your family can be just as overwhelmed as you are about your diagnosis and may have a difficult time understanding and adapting to your disease. They may feel confused, helpless, and afraid. Because of your physical limitations, traditional roles and responsibilities within the family may need to change.
That is why It is important that everyone talk openly and honestly with each other. It is also important that your family learns about your disease so they can better understand your physical and emotional condition and the changes in your family that may result.
Lupus may initiate the need for changes in your family life; some of these may be permanent, others may be more temporary. There may be some friction between family members if for example, you are no longer able to do all the chores you used to be able to do. You may have to ask for and accept more help. Your family may be understandably worried about your health and go to the extreme of not letting you do any of the things you used to do. This will lead to you feeling undervalued and make readjusting your lifestyle harder. Try to think of how this change is affecting your family: they also will need time to adjust. Make sure you find time for your family, especially your children, and try to share your fears and anxieties with them in an open and honest manner. Consider how you would feel if the change was affecting them. Allow time for the things you enjoyed together before you had lupus and continue to enjoy them with some moderations.
Remember, knowledge is the best defense against fear. Keep yourself and your family knowledgeable and informed!!

Peace and Blessings
Saysusie

BeatnikChick
08-07-2005, 12:09 PM
Thanks so much to both of you. :) http://img78.imageshack.us/img78/1531/hug29la.gif

I did talk to my kids about my health situation, and they took it so well. I was/am so proud of them. I guess I shouldn't have worried so much, really. But last week was just awful and I was worrying about everything. Whew! Good thing its in the past now. :wink:

reg-tt
08-08-2005, 04:28 PM
:B-fly: We should allway's remember that lfe is only one day at a time. We can make it as beautiful as we want to be, or let it woe's make hard, it's really all up to us. I say go through it, let go of it, and move on with a smile. And sometimes knowone would ever know but you. Hang in there! You be are right. I chat with you later.

Mitch
08-08-2005, 07:14 PM
Hi BeatnikChic!

Just as reg-tt said, the Lupus Foundation of America does sell a book titled "When Mom Gets Sick" by: Rebecca Samuels. The description says "Geared to young children, helping them to understand their feelings when a parent gets sick." The price is around $6.00.

I wondered myself how much to say, or not. My son is now 14 and my daughter is 9. I was dx'd 3 years ago. They would occasionally hear my husband and I discussing things. I never "hid" it, but didn't talk too much about it either directly with them. I did answer any questions they asked me, though. I felt that if it was on their mind and they asked, I would tell. I was pretty "matter-of-fact" about it and explained to them what it was, but I also made sure to mention that I may need more rest and the way medicine is today, most people live fine with lupus. So, I just have to take my medicine and try not to get too much sun, etc... I kept a confident attitude about it. I felt that if I didn't act afraid, they wouldn't be either.

I'm just recently starting to tell some people. It was a very difficult decision for me to go outside the family with it. I initially only told like 2 of my friends. That was it for the longest time. Then if happened: I ordered a Lupus car magnet (the ribbon kind) and held on to it for months. I just couln't put it on my car. Then one Saturday, after a much needed car wash, I put it on. My first trip out of the driveway - I felt very obvious, but at the same time like a huge load was being lifted off my shoulders. I, myself, couldn't believe how it made me feel. I was NEVER the kind of person who liked to draw ANY attention to myself, but it felt very liberating in a strange/bittersweet kind of way.

I was glad to hear your discussion went well! I just thought I'd mention the book in case your might still be interested.

Bye for now!
Mitch

reg-tt
08-09-2005, 07:56 AM
:B-fly: I learn with having lupus sle that if I don't have a good :D at all times it can take you under real fast, a postive mind as much as possible. There is no room for shame, because you cannot make disappear! Children can be understanding you must learn to trust them and there jusment, please excuse my writing. Allways willing to chat! :D

BeatnikChick
08-10-2005, 07:11 PM
reg-tt you are so right. I know that I can't pretend that I'm not ill, but I have been trying very hard, mentally, to stop thinking of my lupus as something scary and threatening, and instead, think of it as something that has just made me have to reorganize how I live my life. I've found that if I can keep it to a very basic concept like that, it's so much easier to deal with. I still get very emotional about it sometimes, but I'm trying to be patient with myself. It's still a process of transistion. And though I've been ill for a very long time, I only just recently was diagnosed. There's bound to be a period of coming to terms with it all.

http://img78.imageshack.us/img78/1531/hug29la.gif

reg-tt
08-12-2005, 09:49 AM
:B-fly: Hey, Just hang in there, they're going to be some good day's and some bad day's. This is why we have communication boards, keep on using it just know that there is ofter who do understand and who do care,and do love you and that you never have to be alone! You know sometimes I try to be as cheerful as possible with this because it's what keep's me from focusing on all of the things that going on sometimes. And I find that helps sometimes, my disfuctities comes with my lupus sle is that I have all these systoms and there are to be seen there no doubt about that the test that do comes out saying a negative resect, beside the arthor,in the knees, back,legs. and This lupus shit is very, is truely a pain in the ass, please excuse my french sorry!I chat with a little later, Hey, please have a good day! :lol:

twinniesplus1
08-12-2005, 08:11 PM
Just wanted to say I've had SLE since 1989 and it just becomes a way of life, although I do stress a little about the tests. Just recently though, my 5 year old was talking to me and I told her I couldn't do something and she quickly replied, "It's because of your lupus huh Mommy? That's why your hands don't work that good!" Kids can understand! She doesn't know everything but for her she understands I just don't always feel good. That's enough for now.

As for you, please don't look at your having lupus as a "death sentence". Take care of yourself and do what you can, when you can. My mom and aunt with me to support group meetings for a long time after my dx. That helped! Now, I sometimes have to remind them "hey you know I can't do that!" or even more they tell me "You shouldn't do that, stay out of the sun!" But, who turns down a trip to Cozumel without your kids? I just took lots of 50 sunscreen and searched for my own cabanna. You gotta live too! Anyway, listen to your body and get lots of info. especially places like here. The drs always give you the worst case scenario and we must remember they just "practice" medicine, God does the healing (hope my dr isn't reading this!). Keep informed and breathe a little easier. The medicines can help tons and if yours isn't ask for a different one. I've been on several for various SLE issues and have found out I'm allergic to some! And a lot of times I've been that one in a million that does react weirdly. But, I found a dr I trust and then found an internal dr I trust and then we take it one visit at a time. Before long you too may look back and realize "Hey, I've been dx for over 15 years and have adopted 3 kids. My life isn't over: God's still using me!" My prayers are for everyone faced with this terrible disease, may God give you peace and lots of time to rest!

PS Got a call from dear rheumy's office: have an appointment Mon and haven't done my tests (ordered 6 weeks ago). I know, I know, but who has time to pee in a cup 24 hours and chase twins around? Needless to say, I rescheduled.

ClaireMacl
08-20-2005, 04:47 PM
I was 12 when my dad first became ill, it was another few years before he was diagnosed, so I guess we'd become used to him being sick by then.

But as a child of a lupie and as someone who is undergoing the diagnosis process myself, I'd say be completely honest. My dad let us read the literature which is produced by Lupus UK, explained to myself and my younger brother that although he would always be ill, he would be better sometimes and worse at others and we would have to work as a family to get through this difficult time.

Best of luck to you, I am sure your children will support you 100%, oh and by the way, for years I referred to my dad as a wolf and "Manimal" (because his joints swelled), the humour helped all of us come to terms with the challenges it held :)

Claire