Rheumatoid Disease/Arthritis – Telling Your Kids

This question came to me via a friend on Facebook.  I thought it was big enough to be worthy of a blog post.  This is only my story.  I hope others will chime in.

How did you tell your kids about your ra and at what age? Thanks

I was diagnosed with rheumatoid disease long before my son was born.  My flare after he was born was severe and several years long.  I don’t remember the exact time I first told him about it.  It was always a major impact on all of our lives.  Mom/son activities rarely involved anything requiring me to get on the floor.  We read, a lot!  He’s currently reading several grade levels beyond what is typical, he enjoys reading, and I feel somewhat responsible for that (daddy has a lot to do with it too).  I do feel badly because I probably instilled a little too much fear in him (don’t climb on that or you’ll crack your head, don’t run or you’ll get hit by a car).  He was never a daredevil, and I’m probably to blame for that.  I couldn’t catch him if he fell, run if he dashed into the street.  The “be careful or else ___” were constant.  I’m also trying to raise him to be more independent, which actually helps me as we can do more if the little things don’t tire me out.

Cavan, surrounded by beauty and absorbed in a book, at the top of Trail Ridge Road, Rocky Mountain National Park, Summer 2013.

Questions probably started coming around the age of three.  They were simple questions like, why can’t you open ___, why can’t you carry ___, why can’t you take me on this amusement ride, etc…  At first, the answers were simpler.  Mommy’s leg isn’t working good today.  You’re getting so big, mommy can’t carry you up the stairs anymore.  There were a lot of “ask daddy” answers.

Around 2 1/2, my son was diagnosed with allergies and asthma.  I was diagnosed with allergies and asthma around the same age.  I always felt it important for him to be able to speak to how he’s feeling, understand which medicines help him in which ways, and give him a voice in his care.  Around 3 or 4, discussions started happening around why his body makes him wheeze, and how most other kids don’t have this problem.  It was around then that I was able to start talking about an immune system.  Then I broke out bigger words (cells, attacking joints, bones)  We used some of his children’s books about the body.  I compared his asthma with my RA.  I never gave him any reason to think that he would get rheumatoid disease.  My body is broken, not his.  I am also extremely careful to not make it seem like his birth is at fault for my flare (my RA was under excellent control before his birth).  This is just how it is for me.

He’s now seven years old.  He knows that sometimes he has to be careful with me.  Sometime he’s good about that, other times not so much.  Now that he’s 7, the daredevil is coming out a tiny bit.  I let him climb on the kitchen counters now, but I still hold his hand in the parking lot.  He doesn’t ask many questions about it any more, although sometimes he’ll state what he knows.   “Yeah, you can’t do that because it will make your bones hurt.”  His bigger questions lately have been about why we have this website.  He’s starting to understand it as a good thing, where I can get help from others and give help to others.  Doctors don’t know everything, and he already seems to get that.

I’d love some comments on the blog or Facebook about how you told your kids!  Thank you, T.Z. for this question!

– Lori

For those of you who don’t know, I am now supporting the notion that rheumatoid arthritis (RA) ought to be called rheumatoid disease (RD), to separate it from the notion that it’s anything like osteoarthritis.


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