How do you explain Lupus to the kids?

[Guest guest]

I have a great deal of information on Lupus on the website I maintain

for our group.

http://www.itzarion.com/lupusgroup.html

Reading some of that information will help you learn more about Lupus so

you can explain it better to the kids.

Also ..

don't lie to your children .. tell them the truth .. let them ask the

questions .. then give the answers.

I explained to my kids (and to my parents) like this ..

at a sit-down dinner and while washing the dishes .. why?

Because getting bad information is easier to take when you don't have to

keep eye to eye contact with the person who is giving the news; eating

or washing the dishes helps to put a " normalcy " sign on the information.

If you make a big deal about bringing everyone to the living room ..

sitting everyone down and then telling them ..

" I have something to tell you " .. right then you have raised their

stress and emotional level 10 fold.

Instead, bring them the news in a casual setting ..

" You all know I have been sick a lot lately. Well, the doctor says I

have Lupus .. it is a disease that has no cure .. but .. the symptoms it

causes can be treated. If I take the pills and listen to the doctors and

do what is best for someone with Lupus, then I can live a very long time

... years and years. "

When they ask ..

what is Lupus?

My reply ..

well, you know the cells in your body that fight off infection and all

the bad stuff like colds and the flu? Well, usually after all the

infection is gone, these fighter cells just kind of fade into the

background until the next infection comes along.

Now that I have Lupus, these fighter cells have become mutants. These

mutant fighting cells love to fight and kill off stuff so much that now

they do it all the time. Now when all the infection is gone, they keep

right on killing. If there are no bad cells left to kill, then they

begin to destroy the good cells in my body like the good tissue in my

heart, my lungs, my muscles, my skin, and my kidneys.

That is why sometimes I will have a rash on my face .. it is the

fighting cells eating up my good skin cells and it causes a rash.

That is why when I say I am tired, taking a nap WONT make me better. It

is because those same mutant cells are messing up my muscles and making

me weak.

It is not because I don't want to do something with you .. it is because

I cant.

It is not because I don't love you .. because I do.

It is because I don't have a choice in the matter ..

no matter how much I want to do something, sometimes I just cant because

on that day .. the lupus cells are wreaking havoc in my body.

Some days I will be able to do things, because even mutant cells have to

rest some time .. the doctors call it remission. But the good days wont

be as many as the days when I cant do anything.

When they ask .. will Lupus make you die?

I tell them .. probably .. but I could also walk out here and get hit by

a bus too. We all die someday .. so why worry about when it is going to

happen. Let's just enjoy life while we are all here and worry about

death later.

The main point being .. be truthful with the kids .. parents .. or the

people who you work with ..

no one likes being lied to .. and lying only causes more problems.

Be truthful .. relate the facts about Lupus .. and enjoy life while you

can.

" Rion "

http://www.itzarion.com/lupusgroup.html