Explaining Lupus To My Daughters

How do you explain what lupus is to a child?  My daughters are always asking me questions about how I’m feeling because they know that I am not healthy, and their questions are usually easy to answer.  Most of the time they are asking me if my back hurts or if I am feeling tired.   Lately, they have been getting more in depth with their questions and a simple yes or no answer is not good enough.   I am trying to figure out ways to explain to an almost 4 year old (Lexi) and soon to be 7 year old (Arianna) what lupus is and why it makes mommy feel so icky.

The girls are my shadows and follow me everywhere, asking question after question, telling me a story, or talking to each other.  There is never a moment of silence for me until they fall asleep, and last Saturday was no different.  I was putting on my foundation and the girls wanted me to put some foundation on them too (I usually brush their eyelids with a hint of shadow, their cheeks with a touch of blush, and their lips with a dab of gloss).  I told them that they couldn’t use foundation because they were too young and that their skin was beautiful.  I said that I have some rashes on my face and I need to cover the redness up to make everything look even.  The girls know that I am not supposed to go out in the sun, so Arianna asked me if my rash was from the sun.  I told her that it was.  Then she asked why the sun gives me rashes.  I told her it was because I have lupus.

The girls are familiar with the word lupus, as they know I have lupus but we have never had any true in depth conversations about it other than the fact that mommy’s back hurts a lot, mommy cannot go out in the sun, the medicine mommy takes gives her pimples and makes her gain weight, and they need to take naps because mommy needs to take naps.  This particular day, however, the simple answer that mommy has rashes because she has lupus was not good enough.

Lexi looked up at me with her big blue eyes, looking so serious, and asked me, “What is lupus?  You keep having it mommy.”  I looked at her, and then at Arianna.  Both girls were staring up at me as I’m rubbing in my foundation, waiting for my answer.  It took me a minute or two to think of how to explain to them what lupus is and due to my silence, Arianna said to me very firmly, “Why don’t you just get rid of the lupus?  I want you to go in the sun with us.”

I collected my thoughts and started by telling the girls that lupus is a disease and a disease is something that you have that makes you feel sick all the time.  Sometimes you feel very sick and want to stay in bed all day and sometimes you feel a little sick, but can still do things.  I told them that I will always have lupus and cannot get rid of it, but that all of the medicine they see me take helps me to feel better.  I said to them, “Remember what I used to look like?  I did not have all of these pimples and I was smaller?”  They shook their heads in unison and then I went on to tell them that one of the medications I am on (methylprednisolone) helps my body to feel better but when I take it it makes me gain weight and get pimples.  I let the girls know that my body is starting to feel better so the doctor told me that I can take less of the medication.  I told them that it will take a little bit of time but I will start to look like I used to look.

I tried my hardest to use the most simple terms possible and waited for Lexi and Arianna to process all of this information I was giving them.  They were quiet for a couple of minutes, and it was as if you could see their little minds working in overdrive.  Then, Arianna looked a little bit concerned and asked me how I got lupus.  I felt a bit more comfortable answering this question because there was indeed a specific event in my life that triggered my lupus.  I was not about to go into detail with the girls on how some people are born with the predisposition to develop certain diseases, as that is WAY above and beyond their comprehension.  Instead I said to them, “When I was younger, before you were born, I went to Ecuador with some friends from church.  Ecuador is a country just like the United States, where we live, is a country.  When I was in Ecuador I got very sick from drinking their water because it was not very clean.  My body had a hard time getting rid of all of the icky stuff in the water and I stayed sick for a long time.  Because I was so sick for so long, my body got sick with lupus.  Lupus makes my bones hurt, my muscles hurt, gives me rashes, and makes me very tired.”

I thought I did a great job explaining to Lexi and Arianna how I developed lupus so that they would be able understand a little better why I developed lupus.  I was ready to pat myself on the back when Arianna’s eyes lit up.  She said to me, “I know why you got lupus mommy!  When you were in that country did you shake anybody’s hands and forget to wash your hands?  Maybe that country has lupus and you got it from those people.  You know mommy, you should always wash your hands or use hand sanitizer.”  I’m telling you, I bit my tongue so hard to keep from smiling and laughing, as I thought it was both hilarious and just so cute all wrapped into one on how she was trying to play detective.

I gave it one more shot and said, “Lupus is not something that you can get from touching someone.  Lupus is not like a cold or a cough.  If one of you girls have a cold or cough, I tell you not to hug and kiss each other because I don’t want you to share your germs and get the other one sick.  Lupus is like having a cut.”  I took Lexi’s arm in my hand and said to them, “Pretend that Lexi has a cut and then she touches you.  You will not get a cut because Lexi touched you.”  Lexi reached over to touch Arianna and Arianna started to get worried.  She told Lexi not to touch her.  Then Lexi got worried and thought she actually had a cut on her arm and was looking all over for the cut.  I had to tell Lexi that she didn’t really have a cut, I was just pretending that she did and tell Arianna again that if Lexi had a cut and touched her she wouldn’t get cut too.

The girls asked if they would get lupus when they got older and I told them that they would not get lupus and that they have nothing to worry about.  I told them that the most important thing they can do is to eat healthy food, get lots of sleep, and have a lot of fun and that if they did that, they would stay healthy.  They started to feel better about our lupus conversation.  I am not sure how much they understood of what I explained to them about lupus, but they seemed satisfied with my answers.  I’m glad that they had asked me all of these questions and now that I know that they are interested in knowing more about lupus, I will be a bit more prepared in the future.

The last question they had asked me in the bathroom that Saturday morning was, “Can you put make up on us too?”