Talking To Your Kids About Having A Chronic Illness
My four year old asks questions constantly and wants to know everything about the world around him. So it really came as no surprise when he recently started asking more and more questions related to my rheumatoid arthritis.
“Why does your knee hurt today, mama?”
“Why do you have to take that medicine again?”
“Why can’t you pick up baby brother right now?”
(Side note: OMG with the “why?” questions, kid!!!)
In response, I’ve been trying to start an open and honest dialogue with him about rheumatoid arthritis and the impact it has on my life. I obviously don’t want to scare him, but I also don’t want to hide it from him either – because ultimately he is also going to have to learn to live with any limitations that rheumatoid arthritis places on my abilities. I want him to understand what is happening to my body and feel comfortable asking me any questions that he may have and expressing his concerns.
So I’ve been telling him about rheumatoid arthritis and how it makes my joints hurt sometimes. It’s actually been a really good learning experience so far, because our conversations have also given us the chance to talk about other things in the world – like exactly what a joint is, how your immune system is supposed to protect you from illness, and why it’s a good idea to visit the doctor for checkups.
As it turns out, at least some of what I have been telling him must be starting to sink in! The other day we were talking about a cut on my lip that was taking forever to heal – thanks to the immunosuppressant medications I take to control my RA – and my little guy announced: “It takes longer for your owies to heal. Your healer is a little bit broken because of arthritis.” Which I think is a pretty astute description of the situation!
I’m very happy with my plan of honesty so far, but I have to admit that I don’t actually have a whole lot of experience with this topic yet. After all, my oldest has only been able to talk at all for a couple of years! So I reached out to some amazing and experienced moms who are living with chronic illnesses for advice on this subject. Here are their wise words:
Kids will totally feed off your emotions. If you are reassuring and hopeful while explaining things to them, it will help them cope. – Martha, mom to 7-year-old & 3-year-old
I gave myself an Enbrel shot in front of my almost 3-year-old. She took it pretty well when I explained that it was medicine that makes mommy feel better. – Heather, mom to 2-year-old
My 4-year-old is more aware now. He knows that mommy gets shots to make my knees or wrists feel better. He is so sweet when I’m hurting. He says “I will rub cream on your owie, mommy” and wants to help apply the bio freeze. – Skye, mom to 4-year-old & 10-month-old
My daughter is now 9 and I started peppering in the facts about arthritis as young as 3. I stick to the facts and try to keep any negative commentary out of the conversation. That can be hard to do when I have a bad day, but I manage to stay on message most of the time! – Laurie, mom to 9-year-old & 3-year-old
I’m just honest. My rheumatologist suggested bringing my kids to an appointment with me. That really helped them. They were really scared and needed to see that mom was getting good care. – Katie, mom to 13-year-old & 9-year-old
I have always been open with my boys. My 12-year-old son actually came up with a great analogy for RA. He said, “Mom, so it’s like your joints are frozen with ‘ice’ in the mornings and you have to warm them up with a hot bath or movement to melt the ‘ice’ so your joints can move again.” Pretty much! – Amanda, mom to 12-year-old & 3-year-old
I explained to my older kids that I have medicine to help with my pain, but sometimes it doesn’t work and I hurt a lot. They have always understood that I need assistance sometimes, so it’s getting easier now that I can ask them to open things or unbuckle the baby’s car seat for me. – Bethanne, mom to 9-year-old, 8-year-old, & 1-year-old
When my kids were little, I used the comic book from Medikidz that was at my rheumatologist’s office to help explain rheumatoid arthritis. I’ve remained completely honest and now my teenagers are so incredibly compassionate. We have a couple of friends with chronic illnesses who were shocked that my kids understood their limitations and didn’t try to push them. – Julie, mom to 15-year-old & 13-year-old
On flare days, I tell my daughter how I feel. She appreciates the honesty and openness. She does worry, but I always reminder her that her job is to be a kid and to play her little heart out. There have been times when she has seen me struggle to walk or break down in tears in public. When someone asks what is wrong she tells them, “my mom has rheumatoid arthritis. She is just hurting but she will be ok soon.” It always amazes me how in tune she is with me. – Tessa, mom to 8–year-old
My daughter also has juvenile arthritis, and my son was only about 6 weeks old when she was diagnosed, so this is all they know. We are always, always, ALWAYS honest with the kids. We talk to them in ways they understand, always age appropriate. I take them with me to appointments and my son attended my daughter’s appointments. He held her hand for labs and he’s done the same for me. They have both given me injections and my son gives my daughter her injections sometimes too. My son is the first person to help anyone, whether he knows them or not, and I believe it is because he has seen his mom and sister struggle. – Stacey, mom to 14-year-old & 11-year-old
I certainly appreciate these words of wisdom from moms who have already “been in the trenches.” I also find it really encouraging to hear about the positive outcomes of being honest about your chronic illness – such as helping your children develop understanding and compassion for others. I certainly plan to continue being as honest as possible about my rheumatoid arthritis as my boys continue to grow!