Thursday, June 9, 2011

Talking to your children about RA

There was a question on one of the websites as to how to talk to your kids about RA.  I knew my answer would be long so I am throwing it out here.  My disclaimer is that when I was diagnosed at 38, my son was 18 and so he was not quite a "child".

What interested me was the sheer number of people who don't tell their children anything because they don't want to scare them or make them feel bad.  RA is an illness that can span from a "great" day when you are up and moving to being left flat on the bed unable to get out of it.  We pop pills every single day of our lives just to keep going and be able to get on with our life but even so, it doesn't always work.  I am of the generation that grew up in the 1980's the decade of excess.  Visualize with me for a moment.  Imagine having a Mom (in my case) who is constantly popping pills, "can't" do this, "can't" attend that, sometimes is barely able to get off the couch and sleeps a lot of the time.  If we as fellow RA'ers didn't know better and understand the cycle- we would look like addicts.  Can you remember someone whose parent was like that when you were a kid?  I can.  I can remember a parent who was an alcoholic and was mostly non-functional.  You had to feel bad for that kid and I know he was embarrassed.  I feel that if I were to withold information from my child, I would be setting him up for that same embarrassment. 

Children are SO very resilient, and out of the mouths of babes comes all sorts of wisdom.   We have an illness with no cause and no cure. There is nothing for us to be ashamed about. We didn't "do" anything to contract it.  It's no one's fault that we have this monstrous disease so why would we hide this from people who love us?  

When I was diagnosed, I was very straightforward and honest with my son.  While he was sad for me, he also took it upon himself to research online as much info as he could about RA and my medications and what not.  We talked about it and he asked questions that I would never have thought of in the middle of dealing with the diagnosis that I then took to my Rheumatologist.  Yes, he was older, but even younger children will ask questions and perhaps spark a new discussion with your Rheumy. 

Another reason I feel it's necessary to be honest and forthright with our children is the resentment issue.  When they go to their friend's house and see a "normal" mom, doing "normal" mom things and then return home to their Mom who is too tired or in too much pain to get down on the floor and play with them or take them here or there, children will most likely resent it if they don't know why Mom is the way she is. If they are aware, however, that Mom has an illness that never goes away and sometimes she can do all the things they want and sometimes you just can't, it's much easier to understand. 

The final reason I believe in being open with them about the illness is acceptance.  The child who knows that their mom (or dad) is "forever sick" will be much more likely to be more compassionate with others who are disabled.  If they understand that Mom has to use a cane, a walker,a wheel chair or any other assistive device will be far more understanding that little Tommy in their class who is in a wheel chair or Suzy who has Downs Syndrome may need assistance but they are just "people" just like Mom.  They will be more accepting of people who are disabled and more able to see past the challenges to see the person inside. Ironically enough, children are far more able to see that our RA or Fibro, Lupus, whatever we have is not who we are but just that it is just another part of your life like your hair color or eye color.  It's very hard to spiral down into being consumed by our diagnosis when we have someone that loves us unconditionally expecting more from us.  If the children are very young or not even born yet when we are diagnosed they grow up thinking it's "normal".  If they are in the 5-12 age group, they tend to take the information and process it quickly and then get on with their lives.  My nieces and nephews were that age when I was diagnosed.  They were just like "okay" and it didn't change our relationship at all.  I was still "Auntie" I just happened to have an illness.  We can learn a lot from that age group about dealing with our diagnosis.  If the children are teens- then they can be your best support- period.  They can help more with the things we are limited from and they can help us find the information that we need to become an informed patient. 

So there you have it- that's how I feel about talking to your children about RA.   Many will not agree but it worked for me.   


Deb aka murphthesurf said...

Agree 100% with everything you wrote. I am adding just one additional reason we should tell our children..they may one day also get this disease. If they understand it, have witnessed it, see the progress we have made (and setbacks sometimes), witnessed our determination then they to may be able to cope if they ever get a diagnoses.

Jules said...

You have a GREAT point. I never think about that because the only person in my family that had RA was a great Aunt-and I had no idea until I was diagnosed. It would be so helpful to know first hand what the "real" RA is if you were to be diagnosed.

It would also be good to have someone that closely tied to you to talk about it because they would certainly understand.

Jan said...

Only having a diagnosis of RA for one month (after six months of unknowing), this was an excellent post for me to read. Thank you.