A Beginners Guide to RA: Being a Chronically Ill Parent

My son was 7 when I was diagnosed & it put the family into a confusing time of change.  It broke my heart when I overheard him talking to my husband about "when Mommy used to be fun." 

However, we made adjustments & did fine.  He's a pretty well adjusted 20 yr old & we get along well.  Here's some things I learned.

1. Focus on what we can do, rather than what we can.  I couldn't take him sledding, but we could read together & do other things. 

2.  Part of dealing with RA is prioritizing & pacing.  I would try to determine what was most important for him & give up other things, even take a day off work when necessary. 

3. Have back-ups and plan for contingencies.  It is disappointing for children to look forward to an event & then have Mom cancel because she's in pain or exhausted. I would try to arrange him to go to an event with a friend's parent or someone else if I couldn't do it.  Or have alternatives; like instead of going out to eat, ordering pizza.

 4. It was better to say things like, "Everybody in the family has responsibilities & you have to help because you are part of the family" instead of "You have to do this because Mommy has arthritis."

5.  Tell children about the disease.   I talked to a couple of his friends who I thought might be curious about why his mother was in bed during the day, etc.  They asked important questions I had not thought to cover...1)Was this something I could die from? and 2)Is it catching?