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Know Your Limits When Parenting Children with Chronic Illness

boy in wheelchair laughing with father
 

Being the parent of a child with a chronic illness can feel as if the world is on your shoulders. Why? Chronic means the illness is persistent and lasts longer than three months. There is no cure for chronic illnesses, and symptoms vary in intensity and can change over time. A chronic condition can affect everyday activities, cause frequent hospitalizations, require home health care, increase financial strain, and trigger school absences.

Dealing with all of this uncertainty is taxing! One out of four children in the U.S. are diagnosed with a chronic condition—that’s 15 to 18 million children age 17 years and younger (Compas et al., 2012)! Examples of chronic illnesses are diabetes, cancer, juvenile arthritis, AIDS, spina bifida, and asthma.

A chronic medical condition not only affects the child with the diagnosis, but also the entire family. Think of the family system as a car: all the parts have to work together to make the car run properly, right? Something as simple as a flat tire can cause the entire system to slow down. Similarly, a chronic illness can cause hiccups in the family system.

Let’s focus on you parents, the family car’s engine. Parents of children diagnosed with chronic illness report stress from seeing their children in pain, witnessing academic struggles, and undergoing endless doctor appointments, therapies, hospitalizations, and financial burdens. You generally feel pulled in different directions. Talking to others may be embarrassing, or you may not want to be pitied. You most likely don’t have the energy for doing separate activities with your nondiagnosed children—not to mention getting intimate with your partner!

Parents are role models for children in every way. We model healthy relationships, problem-solving, and stress management. If we’re not coping well, neither will our children. According to the American Psychological Association, “A study of children with type 1 diabetes found high levels of parental distress were associated with higher stress and depressive symptoms in their children,” (Bourdeau, 2013). Simply put: The better you cope with the diagnosis, the better your children will cope with it.

So what are you to do, as parents, when you feel pulled in different directions, but want to help your child cope in a healthy way? Here are four tips to help:

  • Know your child’s limits: Are there any limits (physical or emotional) when dealing with this particular illness? If so, what are they? Learn about the illness and about the challenges that are associated with it, and then assess your child’s abilities. Understanding the illness and its potential limitations can help your family be better prepared for those adversities.
  • Challenge your child: Help your child find ways to achieve his or her goals. Find new and feasible interests like adaptive sports, art, music, or other hobbies. Getting involved with peers raises self-esteem and helps children with medical challenges feel “normal.”
  • Lose the “get out of jail free” card: Many parents feel bad (guilty, sad, or responsible) that their child has a chronic illness, and they sometimes lower expectations and rules to make up for it. Discipline your child when he needs to be disciplined. Hold her accountable for her behavior and attitude. Not disciplining causes bigger problems than enforcing rules and expectations.
  • Put your own needs first: I know this is difficult for most parents. Remember that you are the engine in the family car—you need fuel and oil changes, and you need to be flushed out on occasion! Take care of yourself. Feeling angry, guilty, or sad is a normal part of the process. Talking to others and asking for help shows your children how to problem solve.

Coping with your child’s illness is challenging and exhausting. But it can also bring your family closer together when you know your limits and others’, encourage each other, and work together. Your children will imitate you, like it or not. Be a positive role model for stress management and open communication by taking care of yourself.

References:

  1. Bourdeau, E. (2013). When your child is diagnosed with chronic illness: How to cope. Retrieved Oct. 2013, from http://www.apa.org/helpcenter/chronic-illness-child.aspx
  2. Compas, B., Jaser, S, Dunn, D and Rodriguez, E. Coping with Chronic Illness in Childhood and Adolescence. Retrieved Oct. 2013, from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3319320/

© Copyright 2013 by Andrea M. Risi, LPC, therapist in Denver, CO. All Rights Reserved.

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Comments
  • Thomas November 18th, 2013 at 3:55 PM #1

    One thing that you have to remember is to always find the time to take care of yourself too.
    It is hard parenting one with an illness that lasts for a long time, I have watched friends who have done it and have lost a part of themselves in the process.
    But there are times when you give and give and give until there is nothing left of you nor for you anymore.
    It has to be difficult watching a child go through this and any parent that I know would probably give their own life to see that their child didn’t hurt. But since that is usually not the case, you just have to take a little time to feed your own needs and your own sould too; otherwise after a while there is nothing left of you to give to others.

  • charla November 19th, 2013 at 4:39 AM #2

    I see parents like this who almost go into overdrive, thinking that they can do anything and everything but eventually it will get to them and wear them down. The kids don’t need this and the rest of the family doesn’t need this either.

    It is enough that you take care of your child- you don’t have to let this turn you into some kind of super parent because none of us can withstand this for an extended period of time.

  • Andrea M. Risi, LPC November 19th, 2013 at 9:23 PM #3

    Thomas – Thank you for your input! It can be difficult for parents to take care of themselves, and as you pointed out, it is essential. The better we take care of ourselves, the better we can help our children will cope.

  • Andrea M. Risi, LPC November 19th, 2013 at 9:26 PM #4

    Hi Charla -

    I appreciate your feedback! Many parents feel that they have to handle everything on their own…to be a “super parent”. It is OK to ask for help, and it’s one way to be a good role model for your children. I suggest parents make a list of everything they have to do, then choose some tasks they are willing to “give up” to others. Your true friends and family are more than willing to pitch in!

  • Carrie November 20th, 2013 at 12:04 AM #5

    I’ve never witnessed what you’ve described. I lived in Vegas for over two decades, and I believe the gambling element is what caused people/parents to not only neglect there owns needs, but the needs of their children and family. Vegas is a hodgepodge of transits. However, I have seen typical parents attending to typical needs. Off point I know.

  • Lake November 20th, 2013 at 4:42 AM #6

    This has to be the natural reaction, something is wrong with my child and I am going to fix it.
    But how many marriages have we seen go through this with a child and then end up breaking down in divorce?
    This is because throughout it all you become so focused on saving the child, rightly so, but that you forget about the partner and the marriage and all of the other things that need to be supported on a day to day basis.

  • Andrea M. Risi, LPC November 20th, 2013 at 1:15 PM #7

    Carrie – I imagine that Vegas is a distracting place to live, but no matter where you reside, many people neglect their needs for different reasons. Hopefully you find ways to take care of yourself too!

  • Andrea M. Risi, LPC November 20th, 2013 at 1:18 PM #8

    You’re right, Lake – parents are problem-solvers. I’m not sure how many marriage end in divorce in families that deal with chronic conditions. What I can say is that most families struggle at one time or another, and that can cause marital stress. It’s definitely important to cultivate your marriage in the midst of the illness.

  • Kathy January 24th, 2014 at 9:54 PM #9

    This was a great article. I have three kids with a fatal genetic disease. I always thought it got easier as time went on; I would be use to the routine but that has not been the case and it was surprised me! I need to try some of your ideas. Thank you.

  • Andrea M. Risi, LPC January 25th, 2014 at 9:05 PM #10

    Thank you for the feedback, Kathy! I’m sure it’s difficult for your entire family to cope with this disease. I hope these tips can help a bit ;)

  • Donna Coleman February 23rd, 2014 at 9:47 AM #11

    Thank you for this article. My daughter was diagnosed with Systemic Lupus at age 15 and Mulitiple Sclerosis 3 months later. Your article is spot on regarding all the struggles that occur within the family of a chronically ill child. It helps to know we’re not alone.

  • Andrea M. Risi, LPC February 24th, 2014 at 8:04 AM #12

    Donna – you are definitely not alone! One of the best ways to cope with a child’s chronic illness is to find support groups and supportive people who understand your struggles.

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