Living with Rheumatoid Arthritis: Tips for Parents

At a friend’s baby shower, I was asked to write my most personal parenting advice in two sentences. First, I said, “There will be so many times that you will have to say no; so never say no without a reason.” Second, “Try to give the child what he needs, whether or not that’s always what he wants.”

I have five children. Two daughters are grown. Two sons are teens. My youngest turns five this week. Parenting is certainly different with full blown Rheumatoid Arthritis. Tips and methods might need to be modified like everything else.

21 Rheumatoid Arthritis tips: parenting with RA

  1. Be patient with yourself.
  2. Tell your children as much as they want to know, not more.
  3. Use laughter to distill pressure of awkward moments.
  4. Focus on long term goals instead of instant results.
  5. Tell your children where you hurt and how it feels.
  6. Then let them talk about something else if they want to.
  7. Accept help with mundane things like laundry, saving your joints for more tasks that are special to you like their combing hair.
  8. If you can’t do something like comb hair, maybe you can read a story while someone else combs.
  9. Put your effort into what matters to them like reading stories or blowing bubbles or playing Scrabble.
  10. Focus on one another. Take lots of small moments to look into each others’ faces.
  11. Tell the child a little fact about you at the child’s current age so they can relate to your viewpoint or imagine you before RA (if you don’t have JRA).
  12. Be clear about what you expect from them. Give reasons for rules.
  13. Be nearby even when you are unable to participate in their activity. Cheer them on.
  14. Make the relationship a priority over behavior.
  15. Use RA to teach sensitivity concerning disability or limitations. Everyone has a limitation.
  16. Save graphic information about RA for age appropriate situation.
  17. Let the children help you. They could make a bed, cut up food, or carry something too heavy.
  18. Say something hopeful sometimes about your condition or a new treatment.
  19. Play out loud together as often as possible. Tell jokes, watch funny shows, read the comics…
  20. Store medicines where children cannot find them. Be sure little ones do not know where to look.
  21. Help them not to be afraid that they will have RA. The majority of our children won’t get RA.

What has worked for you? Let’s talk about what else we can do with RA and kids.

Recommended reading:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

25 thoughts on “Living with Rheumatoid Arthritis: Tips for Parents

  • June 16, 2010 at 8:12 am
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    Great article as usual. All I would like to add is that I always told/tell my kids the truth. Admittedly it maybe an edited version of the truth dependent on their age and understanding but the truth nevertheless.

    Reply
    • June 16, 2010 at 8:20 am
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      Hi Tricia, I was just talking w / fellow Aussie on another post. 😀
      Great advice. I knew I’d miss something important!

      Reply
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  • June 16, 2010 at 9:56 am
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    Focus on long term goals not instant satisfaction…. this is one I have come to accept as being quite possibly the most important.

    I always told my kids together we can take the T off can’t and get it done. Also, never make a promise if there is any chance you will break it. Give an honest answer about your ability to fullfil the promise or just say, “we’ll wait and see and i’ll do my best”.

    Great list.
    Tazzy

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    • June 16, 2010 at 10:03 am
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      Great points, Tazzy. I think I say, “I hope so” to Roo all the time! 😀

      Reply
  • June 16, 2010 at 12:03 pm
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    Thanks Kelly! I really need to follow #1! I think I am too hard on me… I was diagnosed almost 2 years ago prior to that was in the best shape of my life- I ran & taught group fitness classes during both my pregnancies (I am a fitness/wellness coordinator). I started having foot pain, then hand pain when my youngest was 10 months old… got the RA dx 9 months later. I have found parenting 2 toddlers (now preschoolers) the most challenging, especially with discipline, sometimes I am sooo exhausted that I let things slide, then beat myself up about it later. I also want to be active and play, hike, rough house with my kids and somedays, I just can’t (again, guilt strikes). How do others do handle these things?

    Reply
  • June 16, 2010 at 12:08 pm
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    Something my counselor told me to do and it worked beautifully. At one time or another they all get up in the middle of the night crying mommy. I would be in tears or rage by the time I got to her bed because I couldn’t get there quick enough. HERE’S THE SOLUTION. Talk to them honestly about your situation. Then give them a “magic flashlight” to put by their bed. If they wake up and need you just tell them to turn on their magic flashlight and come to your bedside. Even toddlers are smart enough to do this because they know your limitations. She got what she needed, I felt MUCH better about the situation, and Dad didn’t always have to get up with her. Goodness knows he does soooo much.

    Reply
  • June 16, 2010 at 12:11 pm
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    Start in the Spring looking for summer activities YOU can do that are easy and free. This summer we are doing the library shows on Friday, she has fun, I get to sit. Water Activities at church on Wednesday night, again playing with her friends and I can watch! Then our local movies is doing a $5.50 early morning show. Plus my hubby and I found a drive in pretty close by. I don’t have to worry about my appearance all too much and she can move around, I can sit or move around when I need to. I agree with the telling them, we’ll try. Just gotta try and do what you can do and GOD will do what you can’t.

    Reply
  • June 16, 2010 at 3:00 pm
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    Three kids–now all teenagers. It’s been four years since I was diagnosed. I agree–get help when you can and save your joints and energy for the important things. Let yourself off the hook and forget about guilt. There’s plenty of that in parenting without adding RA into the mix. Have them help. And look for humor in EVERYTHING, even the pain! Your kids are watching. How you handle this models to them how they’ll handle the difficult times in their lives. If you can laugh, pray and keep going, so will they.

    My husband and son rewrite hymns to match my symptoms. . .”she falls down, she breaks her crown when her knees stop bending. . .and she cries ouchy, ouchy, ouchy. . .” We laugh even in church, while everyone else sings the “right” words. They worry about my pain, but this lets them know that Mom is still ok, that we can all laugh together.

    Thanks, Kelly, for the wonderful job you do here. I’ve been reading for a while. Just thought I’d add a bit here today. You are in my prayers.
    Sherry

    Reply
    • June 16, 2010 at 8:45 pm
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      I completely agree. Thanks for wisdom of experience. Humor is a gift. Like I said, it can distill some pressure. I think I’d really like your family. Add more to any blog you’d like to. :yes:

      Reply
  • June 17, 2010 at 1:01 am
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    thanks so much for your tips. i was diagnosed 3 years ago after delivering my first son, and delivered my second son last november. i often need to remind myself that my situation is different than that of my healthy mom-friends. it’s so easy to think that i’m not doing enough for my children, but your reminder (and everyone else’s) that it’s not the “things” one does with her kids but how she spends the time will stay with me. i plan to re-read this article, and all the comments, when i’m tempted to compare myself with others. my older son knows about the “owies” in my body, pretends he’s giving me my shots, and tells me that soup will make me feel better. he and his brother will never know me as a healthy mom. ironically, i never knew my mom as healthy either because she has had lupus most of her life; however, since i didn’t know life differently, i did not think i was missing out on anything. hopefully my sons will feel the same.

    Reply
    • June 17, 2010 at 8:27 am
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      Amy, You are right – it’s not how much you can “do.” Your sons will know you love them and that is what they will remember.
      Did they tell you when you were diagnosed that it’s common to be dx’ed after childbirth? Was is easy to dx?

      Reply
      • June 17, 2010 at 10:56 am
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        my rheumatologist told me it was common. diagnosis came really quickly, too. fortunately, my primary care physician specializes in sports medicine, so she suspected something was unusual in the way my foot joints hurt. after a very high sed rate, she sent me to my rheumy. the sed rate was, and has been, the only thing on official tests that indicates something wrong. however, my strong family history of autoimmune disease convinced my rheumy that something was wrong. once more of my joints began hurting bilaterally, she diagnosed me with RA. i think all of this happened within 7 months after first meeting her. after about a year and a half of pain management (i stalled on methotrexate), she suggested i have the other children i wanted to have so we could really begin knocking down the RA. once i had my baby, i started humira, and methotrexate injections (25 mg). i added acupuncture, which i think helps make my body more receptive to the drugs.
        wish we could have a playdate, kelly! you sound like such a cool person to know. 🙂

        Reply
  • June 17, 2010 at 4:38 pm
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    I think the hardest thing for me is remembering that I need to say NO sometimes. For some reason, maybe pride, maybe just stubborn, I will push myself too hard and then pay for it later. Sometimes I wonder if the lack of success with biologic drugs is because I don’t take extra timeouts and get plenty of rest. (Been through Enbrel, Simponi and now on Cimzia) Sometimes, as long as I can find the energy, I just keep on pushing. I still work full time, am raising an 8 year old (all activities included), all housework, Church youth activities, baby sit grand children and do just about anything else.
    I am not posting this to ask for a medal or anything, I just wonder how many of you do the same thing? Most people don’t even know that I have RA because of this. Am I speeding up the destruction of this disease because I do this? My Mom, who passed away last March after suffering with Lupus and RA, used to tell me that if she sat down, she wouldn’t be able to get back up. So she would just keep going. Guess I learned this attribute from her.

    Thanks for listening folks!
    Amy

    Reply
    • June 17, 2010 at 5:12 pm
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      Amy, I am the same way. I push it as hard as I can – I always say “I leave it all on the field every day.” Like you, I have grown kids so I know how short time is & how valuable is every minute. Saying no has become more of a habit now, but I still feel bad. One thing I had to say a flat no to a few times is Boy Scout stuff. I explained to the leader why I can’t attend certain things or sleep on the ground & they really don’t get it. But my sons are great w/ no. They realize that I would love to be still doing it all. Maybe it will be good for them that they had to “handle” all the Scouts’ stuff alone – w/out me.
      Saying No is an important point. It made me smile to click and see your name. :heart:

      Reply
  • June 18, 2010 at 12:49 am
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    Kelly,
    Thanks for the kind words. My 8 year old for the most part is understanding, but because of the mixed signals I giver by keep doing do much, it confuses her. I try to be open and honest. She helps a lot, like opening jars and we laugh at the way I sometimes have to do things “a little different” from most people, but we still get it done. Life is a constant learning experience. My Mom used to tell me that we should never stop learning. I try to remind myself that every day!
    Hope you have a great weekend in sunny south Florida!

    Reply
  • June 19, 2010 at 9:02 pm
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    I kept my disease from my kids for a long time – I did not want to burden them or scare them. I found out that when I did tell them, things made a lot more sense to them. They were often resentful when I could not get up and do things with them or asked them to let out the dogs for me. Once they knew, it all made sense and it did not feel like I was using them for slave labor. They are not scared about my disease at all. I just keep the details to a minimum. I do let them know when I am not feeling well though.
    Thanks for posting this. YOur advice was very helpful and affirming.

    Reply
    • June 20, 2010 at 12:45 am
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      aww, you are welcome Heather. I’m so glad we have each other to share ideas. I can’t imagine the old days of RA w/out the internet. It is a good point & don’t you think the kids become more responsible & confident knowing that their contributions are important?

      Reply
      • June 20, 2010 at 9:41 pm
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        Yes! YOu are so right. They have really stepped up. Today Emily was fighting a cold bug and I had a bad relapse of my symptoms today. I actually apologized and explained my inactivity and she said, “That’s okay. I have felt that way today too.” It was nice to feel like she understood. I have had more trouble with my 11 year old son, Michael. He is more resistent but he has been making great strides. I explained to them that they have to know how to take care of themselves.

        Reply
        • June 20, 2010 at 10:02 pm
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          That is a good point. Here’s a funny one. My Roo who turned 5 today likes to say “I’m not going to clean up – that’s your job.” All of his brothers & sisters look at him with shock. He will definitely get a clue pretty quick around here. LOL 😀

          Reply
  • June 22, 2010 at 8:04 pm
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    Martina’s Hands

    Some days my elbows hurt,
    some days they dont,
    Some days my knees work,
    Some days they dont,
    As for my hands,
    Well, they will ALWAYS BE,
    Praying for RA people,
    Just like you and me.

    Written by me and my 5 yr old daughter Martina who was dx at the tender age of 18 months.

    Reply

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