Explaining Lupus to Friends and Family

[Guest guest]

Sometimes it helps to have small 3x5 cards with a short description of

Lupus to hand to friends who don't seem to understand what you are

going through with Lupus.

When explaining to friends and family about Lupus .. don't lie to them

or "sugar coat" the explanation .. tell them the truth .. let them ask

the

questions .. then give the answers. And remember .. when delivering

news such as this .. the setting is just as important as the words.

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

I had them all to dinner at my house .. a very casual pot-luck type of

get-together.. I explained to them while we were all sitting down at

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;

being able to turn your attention to 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 these

mutant cells 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.

When you ask me to go to the mall with you and I say I can't, it is

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

it is because

I can't.

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 can't

because

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

and I am in too much pain, or am just too weak.

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 .. the

people who you work with .. friends and family.

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"