Talking to older kids about your chronic illness

girl_upsetWhen your kids are younger, they are more willing to accept things the way they are.  They question less, and are happy with simple and brief explanations for why a parent is sick or in pain.  But once they get older, starting around age 7, simple explanations no longer cut it.  On top of that, as a child heads into the teenage years, the parent/child relationship becomes more complex, not to mention the childs increasingly complicated emotional repertoire!  Your once joyful, helpful, and cuddly child may start rolling her eyes, shutting down, or even getting angry at the mention of your pain or illness- leaving you wonder how on earth to approach the topic with them.  Or, your child may feel guilt over your condition, being unable to shake the idea that it’s their fault, or acting as caregiver and reversing the parent/child roles.  However your child handles the stress of having a parent with chronic pain or illness, communication is always key.  Here are some tips to help your family navigate the stress-ridden waters:

1.  Communicate. Create a safe environment for kids to be honest and open with how they feel.  

Does your child get prickly, sarcastic, or say hurtful things to you about your condition?  Instead of reacting the natural way- defensiveness- take a deep breath and take it as an opportunity to talk.  Ask them why they feel that way/said what they said (perhaps “you seem to have some strong feelings about that, why do you think it makes you feel angry?”), and make open-ended conversation starters like “it must be hard to have a mom/dad that seems to be sick all the time, huh?”  Additionally, speifically tell them that it is OK for them to tell you anything they are feeling, even if it could be perceived as hurtful.  Remind them that as long as they are being honest and telling you something in good faith, you will respect them and won’t be angry.  For example, if you have to use a cane, park in a handicap spot, or use a wheelchair, they may feel uncomfortable or embarrassed when they’re with you in public, but don’t want to hurt your feelings by telling you.  These feelings are totally natural for teens and kids who are working very hard to develop their identity, and they can’t really help it.  You can’t help use the cane… but at least its out in the open!  Along the same lines, it’s important for you to tell them the truth.  Are you taking a medication that can cause side effects like fatigue, mood swings, or memory problems?  Tell them about it, and why you have to take it.  Do you have to miss the soccer game because its at 8 in the morning and you just can’t get up that early?  Explain how much you want to be there, and make it clear why you can’t.  If you talk openly about your condition, it will show your kids that its ok for them to talk openly about it as well.

2. Educate. Understanding the nature of your illness breeds sympathy and less stress. 

Many of us try to shelter our children from the realities of our condition.   It’s may be appropriate to be vague for little kids, but once your child gets to the tween or teen years, it is important for them to have a clear understanding of your condition.  In addition to giving them a better understanding of WHY you hurt and what to expect in the future, it will do two additional things; give your child something to be angry/frustrated at besides you, and secondly, have it blatantly spelled out that this isn’t their (or your) fault.  Find some easy to read, reputable resources online, like the mayo clinic page on your illness.  Better yet, get them pamphlet or book on the subject; this may reduce random internet searching which could lead to misinformation.

3.  Community.  Feeling alone never helps.

If you’re like me, you may have spent years feeling totally alone in the world, and not knowing a single other person with the same condition as you.   I am now active in several online communities where I’ve met wonderful people living with the same condition who have kids the same age as mine.   This experience was life-altering. If your child is really struggling with your illness, it could help to introduce them to a child, or group of children, their age who also has a sick parent, perhaps children of your own friends.  If they’re old enough, joining a Facebook group or something similar can give them a safe place to vent to someone besides you, and ask questions.  The “Kids with chronically ill parents” group is a new FB group option!

4.  Get help if your child is really struggling.

Although stressful, most kids won’t need outside help coping.  However, a small percentage of kids may.  Warning signs of potential problems include anxiety, sadness, and difficulty relating to peers, sleeping disorders, changes in appetite and school troubles (cms.carepages.com).  If your child is struggling, don’t ignore it and assume everything will turn out fine- take them to a qualified therapist, ideally someone experienced in chronic illness and caregiver support.

5.  Make time to have fun.

There are always ways to have fun and spend quality time with your child, no matter how difficult things may be.  Make time to spend alone with them, and focus on something besides your illness.   If you can’t leave the house, you could play a board/trivia game, watch a special movie, learn a new craft, order take-out, make pop-corn or bake, watch silly cat videos on youtube… lots of options!

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Elizabeth Christy

Elizabeth Christy is an author, writer, and IT professional living in Sterling VA. She lives with her husband James and 4 year old son, Jimmy. In addition to basic survival, Elizabeth enjoys reading, sewing, and nature. She also runs the nonprofit organization "Books and Bottles", which promotes reading to young children. (Facebook.com/booksandbottlesorg

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