Helping Children Through Chronic Illness

Dr. Laura,
My heart is hurting for my little girl. She is 11 years old. About a year ago she was diagnosed with Juvenile Arthritis after many months of illness.

Even with treatment and medication, she still has flare ups and pain in her joints. The arthritis affects her hips, knees and elbow mostly. She also tires more easily than other children. Some weeks she feels okay and can participate in normal activities, but some days she can barely get out of bed or walk without assistance.

I really could use some advice with how to help her deal emotionally with her illness. She cries and screams that it is unfair that she has arthritis, has to take medicine every day, get shots every week and go to the doctor all the time. She keeps saying that she just wants to be a normal kid.

The medicine that she takes also contributes to her mood swings. She gets so angry and upset that we have a great deal of trouble calming her down. She lashes out at me and my husband and she is just so angry. Before getting sick she was the happiest, most cheerful child ever. She has told me that she hates being different and that none of the girls in her new class will play with her. She thinks that it is because she is limping from her hip hurting.

The other issue we are facing is if we should pull her from cheerleading. That is the one activity that she truly loves. She has been in a cheer program for 5 years - since before she ever was sick. She enjoys everything about cheerleading. When she is hurting, she still insists on going to practice even if she has to sit off to the side and just learn the cheers. Plus she has known the girls on her team since before she was sick, so they do not treat her any differently.

Her coaches are really understanding when she is not feeling well or in pain, but the program is getting more and more intense as she gets older. My husband feels like it is too much on her and we should pull her. I know that it might be too much for her right now, but she is miserable at school and mad at the world, how can I take away the one thing that she truly loves?

Thank you so much.

What a heart-breaking situation for your daughter -- and for you.

Naturally, your little girl is angry. First, she's in pain, and that makes anyone miserable, frustrated, and ready to lash out. Second, she can't do the things she wants to do, that most children can take for granted. Third, her whole life is medical-ized and this illness dominates her life. Finally, she feels different from other kids, just at an age when children get so worried about being accepted. This would be a lot for anyone to handle, let alone an 11 year old.

I am not a physician so I am going to give you psychological advice, not medical advice. But I do want to pose some questions that I think are essential for you to explore:

  • Are the doctors aware that you think the medication causes mood swings? This seems like something that needs to be addressed. At the very least, you could explore meditation with your daughter, which has mood-stabilizing effects.        
  • Does the medicine provide adequate pain relief, and if not, is there an option for you and your daughter to learn hypnosis to manage the pain? Hypnosis has no side effects, and is very empowering.
  • Have you explored diet options? I have not seen research studies on this, but I have seen compelling accounts that link "leaky gut syndrome" with autoimmune diseases like Juvenile Arthritis. Here's one such story from the New York Times

So, how to help your daughter deal emotionally with her illness?

1. Let her cry and scream. It IS unfair. She has every right to be upset. When she lashes out, stay with her and empathize with how upset she is. Of course don't let her hurt you, but stay as kind and calm as you can and keep an emotional bridge with your soothing voice. If you accept her rage, she will go under it to her grief, for the life she has lost and will never have. That grief is huge because the loss is huge. I know it is hard to see your child grieve and rage, and part of you just wants your happy girl back. But before she can adjust, she has to accept this situation, and that means grieving. So when she's upset, your job is to accept her feelings and empathize about how mad -- and how sad-- she is.

2. Give her other outlets to deal with her grief and rage. Art is a wonderful way for children to process emotion. Pounding clay can be therapeutic. Or encourage your daughter to "draw" her upset on days when she is grumpy. It doesn't have to look like anything to be therapeutic. Just nod and say "I see you used a lot of blue today" or "I see a lot of energy in this drawing" or "Tell me about this picture." Then listen, empathize, and hug her. You might put dates on her artwork, and put it all in a big folder or portfolio. That shows her you value the art, and see value in her self-expression, even when it's about pain.

3. In order to stay calm with your daughter when she is upset, it's important that you have a way to process your own pain about her situation. Journal, cry, talk to a friend or counselor to support yourself through this hard time. Your daughter has a lot of crying to do, and she needs you to have worked through your own emotions enough that you can deal with the rawness of her pain. Otherwise, it would be natural for you to find her pain unbearable and to give her the message to shut it down. But repression won't work here; she needs to express it to a brave, compassionate witness--you!

4. Stay positive. Empathize with your daughter's grief and rage, but keep your expectations high. Kids who have a "poor me" attitude are cultivating a chip on their shoulder and a sense of powerlessness. That's not what you want, obviously. Instead, empathize with her pain but hold the expectation that she is a unique individual with much to contribute to the world. Tell her that everyone has trials, hers just came earlier than most, and you know she is strong enough to make it through even this.

So expect her to do well academically and to find other passions, such as art, music, writing, reading, etc. Expect her to be a kind and compassionate person, even if sometimes she can't be because she is just too pained or angry. Expect her to pull her weight in the family by doing chores (just like her siblings, if she has any), and find chores she can handle. (If she does have siblings, be sure to spend one on one time with them every day, as well as with her.)

Your daughter is trying to make sense of a very unfair situation. You can completely validate that, even while understanding that your daughter has unique gifts in spite of her burden, and maybe even because of her burden. If that makes sense to you, it will communicate itself to your daughter over time -- not in a way that invalidates her pain, but in a way that makes sense of it. Even if you are not a spiritual person, you can certainly communicate your belief that we can all lead meaningful lives that make a contribution, even those of us with a chronic illness.

5. Books are a great way to help children process emotion. Keeping A Secret: A Story About Juvenile Rheumatoid Arthritis  by Elizabeth Murphy-Melas is one book about Juvenile Arthritis, but any books about kids struggling with illness, with being different, and with making friends will touch a chord and be helpful to her. Expect her to have big feelings about these books as she reads them, see it as an opportunity for a great discussion, or maybe a good cry. The more your little girl has opportunities to feel and express her big feelings, the more quickly she will get past them.

6. Play physical games with your daughter. One of the issues she is grappling with right now is that she doesn't feel physically capable. She needs an antidote to that. Wrestle with her and let her win. Put your hands against hers, let her push at you, push you across the room while you resist (a bit) and even push you over. A great book that describes how to do this is Playful Parenting by Lawrence Cohen. He thinks it is important for all girls to gain a sense of their physical power, and for a child with physical issues it's even more imperative.

7. Your daughter needs a friend, and she needs your support to make one. Talk to the teacher. Is it true that the other girls won't play with her because she is limping? Does the teacher have any ideas about a child your daughter could become friends with? Can the teacher pair her with another girl for a special project, and you can build on that to invite the girl over to work on it, go for ice cream, etc? What does the teacher suggest?

It is painful to be different, and maybe especially so at the age of 11, so finding ways to promote friendships needs to be at the top of your family list. What happened to her friends from before her illness? Is there a club at school where she could make friends with the same interests?

Your daughter will probably need your help to come up with some lines to "explain" her limping etc. She may also need to participate in a social skills group so that she has the skills to make good connections.

8. Contact a local juvenile arthritis support group.  As you will read in the comments below, it will be empowering to your daughter to connect with other kids who are going through the same thing. It will also be a relief to you, giving you both emotional and informational support.

9. Encourage her passions. Your daughter needs something in her life that she loves, and that makes her happy. It sounds like so far, that thing has been cheerleading. I understand why her dad feels it is too much for her, but I think it would be a mistake to pull her from it. She needs it right now. Even if she just sits on the side and learns the cheers, the bonds with the other kids are very important to her right now.

BUT she will become more and more frustrated with it, almost certainly. And at some point, she will most likely tell you she is ready to stop. Let her make that call. If you can work with her in the meantime to discover another passion, it would be very helpful to her. There are many passions that don't depend on physical strength. Your daughter is being sent in another direction. Help her learn to listen to those messages.

I hope these suggestions are helpful. You have a lot of heavy lifting to help your daughter right now. Kids can make it through almost anything, as long as they have a parent who listens to all their pain and walks through it with them. That's not easy, but it is the greatest gift you can give her. Remember that sometimes our greatest tragedies are also our greatest gifts, in ways we could never have foreseen.

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