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Discussion Starter #1
I have an 8yr old and an 11 yr old and I have not told them what is wrong with me. I don't think I can explain it on their level so that they would understand and not worry about me on a daily basis. They know I am sick, that I get tired and hurt alot and that I take alot of medicine but they do not know why. Should I tell them?
 

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Personally I would tell your children. My children are 3 & 4 and they know I have lupus. One day my 4 year old asked why I had to go to somany doctors and take so much medicine. I said that I have something called Lupus and she asked if it was because they didn't always behave. I realized at that point that I needed to explain some things to them. I basically just told them that the lupus makes mommy sore and tired. That is about all that I went into it with them but your children are a bit older and you may want to explain more to them. Kids tend to think that they are at fault and that was my worst fear.

Only you know your children and what they can handle but that is my story.
 

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Hello :)

I find that being as open as I can with my kids makes for a happier atmosphere all round. There are sometimes things I can't do with my kids and I can't always tell in advance. Because they know about my lupus they also know that this is a possibility and are not "disappointed" if we say that we are not going somewhere. In any case when we think of doing something we tend to say "possibly" rather than make promises we can't keep.

My children are the same age as yours. I have found that they don't worry as they can't in any way comprehend the enormity of it. I don't spend my time shoving it in their face but things are always better when explained and when kids realise you're being straight with them.

Also, both mine have done some work on the immune system at school - really basic stuff telling them how their immune system protects them so it was quite easy to explain to them that mine malfunctions.

Apart from that, I think it is also important to be reassuring and let them know that you are not going to die (you'd be amazed what they can imagine if we don't talk about it). I'm lucky there in that my Mum (who's 71) has dermatomyositis and lupus and looks the picture of health so they just think "oh, it's the same thing as Granny".

Hope that helps,
Katharine
 

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I would definately tell them, you just need to plan how and what! My nephews are about that age, and I'm amazed at how mature they are, and what they can cope with. If you leave them wondering it will probably be more upsetting for them - and they may draw their own wrong conclusions.
 

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elisabethm
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My two are adults but i do have two grandsons that know i have lupus.For them i think it is impotant that they know as there are days when i am in bed when they come in or in my jammies so they know that they have to be carefull on how to get the hugs and kisses that they want.The youngest is only 16months so he does not no anything is wrong but as he grows he will learn Hope this helps Elisabeth
 

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It is rather like explaining the facts of life I'd say in that it all depends on what the child can take in. I explained it in greater detail recently to my 9 yr old grandaughter with the analogy of the immune system being being like the defenders of a fortress from attack by enemies, with the body being the fortress the enemies being "infection". She already had a rough idea of what the immune system does and knew a little about allergies from school biology and stuff.
I explained that the immune sytem gets a bit mised up sometimes and starts 'attacking' things it doesn't need to as in allergies to foods or contact allergies. I went on to explain that sometimes the immune system gets very mixed up and even more confused and starts defending the body from itself
:rolleyes: That stage is represented by some of the troops defending their castle from beseigers suddenly turning on their comrades within the castle. Assurance and honesty are very important.

My mother hid an illness from us kids and I well remember the extreme anxiety it caused us, not having the faintest idea what was going on but well aware that something was wrong. It would have been much easier if we had been given the opportunity to help and understand something of what she had been going through.

Best of luck
Clare
 

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Oh This made me think. My kids were very young when I got dx, but when they were around 5 and 9, I told them I had something wrong with my blood and that it made me so tired and made my joints hurt. It was when they were 13 and 9. I explained it in more detail. I think myself it would be worth explaining as soon as you can.

Sheila x :)
 

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I have a 4 year old and she doesn't know that I have a disease called lupus, but she does know that sometimes there are some things Mommy can't do. But overall, I don't think I'm too much different than other Moms I know with kids my age so I don't see a need to go into details with her at this point. Other mom's I know refuse rough house play, don't pick up their 4 year olds, and will sometimes tell their kids they are too tired to go to the park, etc.

I think by the time she's 10-12 though I will have had a brief discussion with her at the very least about it. A lot depends on how you are affected, how mature they are, and I think it's important to try to think of what they may think about it all and what they may worry about based on what you tell them --- to hopefully allay their fears (including the question of if they will get it too - is it infectious? etc.).
 

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Discussion Starter #10
Thanks for the advice I know it will be better for them if I tell them. I think I will go to the library and see if I can find a book that is on their level to help them understand that is how I had to get my 11 yr old to understand about her period
 

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The Other Illinois Tammy
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It is a personal choice and you know your children better than anyone. I was up front with my children so they would not worry, but they had seen people get very sick and then pass away. I did not want my children worrying everyday if when they left for school I would not be their when they came home. For me it was a choice of easing their minds that I had no plans of passing away. I also took my children to the doctor appointments with me so if they had questions they could ask me doctor and he could answer what I could not.

I was the one with lupus, but they were living my life also. I wanted their concerns addressed the same as mine. I also told my doctor that up front that I had 2 smaller children and I had choosen to tell them and he would have to treat them with me. He was very understand and respectful of my wishes.

You and your husband will have to decide if that is what you want to do and if they can handle it better knowing what is wrong or staying in the dark? You can always see if your doctor can help you with telling them and be willing to talk with them if they do have questions that you can not answer. Lupus is a family disease if only people got that and treated it that way. We have the physical and mential part of it, but the family is given nothing to help them most of the time. They to have mential things to handle and need someone to talk to about it all.

I hope this helps you in some way. It is hard questions that we have to answer, but it is a good one for many to think about. I hope that you are feeling well and doing well.
 

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The only thing that really worries me about telling them is that my husband is not their father. They have seen their father go through a lot of illness. He is terminal and they have seen it since they were really young. When they go to visit him which is not very often they see his oxygen tank and he will walk around with no shirt on and they see his port a cath and all of the scars from his surgeries. i do not want them to put me in the same catagory as him. I have to find a way to explain it so they understand my illness is not like their dads and I am not going to die from this illness anytime soon. I have always been the one to take care of them and be there for them and really do not want them to think I am letting them down in any way shape or form. My 11 yr old is a very tender emotional child and I do not want her to hurt or worry about me.
 

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If they've seen how ill their father is, and know that you're ill, then they may put two and two together and think that you'll end up the same way. You need to find the words to reassure them. Have they ever appeared distressed about you being ill? What do they say when when you're sick? What do you tell them already?
 

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Discussion Starter #14
When I am hurting and can not get out of bed they just say poor mommy and try to snuggle up with me but they can't do that because it hurts too bad. I have just told them that I am sick but not with what and tell them that all of the meds that I take are to try and keep me healthy. They look at it like it is a cold or something. Since I am not sick all the time they do not think of me as being sick all the time. They know I have athritis in my back and it limits some of the things that I used to be able to do with them.
 

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Maybe they know as much as they need to know then, perhaps they don't need to know a name. Maybe if they're not upset about it or questioning then it's enough for them to know you have arthritis, which explains some of your symptoms. It's a really difficult one, and it's hard to know what's best. Only you know how it would affect them. If your 11 year old is sensitive anyway it maybe it would upset her where it doesn't now. If they ask questions then it's best to be honest, but if they accept that you are ill and understand you might not do the things you used to, then maybe they know all they need to right now.
 
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