My Son is Sick of Being Sick....And Frankly, So Are We!
By Melissa Carpentier, Ph.D.
Type 1 diabetes at the age of 10, it took everything you had to tear yourself away from him for just the slightest moment. Now, at the age of 14, the time you spend interacting with him is not one you look forward to at all.
How he’s doing…
Over the past couple of years, your son has become increasingly angry and withdrawn, the friends he was once inseparable from no longer come around, and his grades have dropped from all A’s to all C’s. He hasn’t kept up with his insulin injections as he should, and this has resulted in two hospitalizations in the past year. The nonchalant, happy, and compliant boy living with diabetes is long gone and in his place is this new person who is virtually unrecognizable to you. You’re baffled by the transformation and not quite sure what to do. Things seem to be getting worse, too. As high school is getting closer, he’s making comments indicating that he would be better off if he was home-schooled. Although the thought of high school can be scary for any 14-year-old, the fact that your son has been living with diabetes for the past 4 years means that he is, unfortunately, not a typical teen. Rather, he has faced significant challenges throughout his short life thus far, and this will continue for the rest of his life unless something changes soon.
How you’re doing…
You’ve had it pretty rough, too. You’ve been so busy taking care of your son’s needs that you’ve failed to realize that you haven’t been taking care of yourself and neither has anyone else. You’ve gained 20 pounds in 2 years and you can’t remember the last time you spent time with friends. You’ve also been falling behind at work, which is completely unlike you. You’re exhausted in more ways than one, yet you are determined to keep putting up a front that everything is fine and you’ve just “been busy”. Behind closed doors, though, you often find yourself wondering “Why him? Why our family? What if he hadn’t been diagnosed with diabetes – would we have had more children?” Life just doesn’t seem fair. You imagined your life with your son to be a certain way and things have turned out far different than you could have ever imagined.
You’ve experienced a loss – but since it is not a tangible one, it can be difficult to put into words what this is. This has been a problem for both you and your husband. It seems like you lost the ability to communicate and support one another once you heard the word “diabetes”. You’ve let your relationship slide to the point where there hasn’t been any “we” time in a very long time. The limited interactions you do have consist of arguments about how to get through to your son. Recently, things have progressed to the point where you’ve each thrown out the “d” word in the heat of the moment, something which was once never an option.
What the research suggests…
The available research suggests that you and your family are not alone. Many children and families have struggled with very similar issues. Fortunately, research indicates that psychological intervention can lead to significant improvements in chronically ill children’s behavioral and emotional outcomes, social competence, problem-solving, and adherence to the treatment regimen. We also know that parental involvement in therapy is associated with more positive and persistent positive effects on the child, and better family functioning is also associated with a number of improved child outcomes, including decreased anxiety and depression symptoms, acting out, and post-traumatic stress symptoms. Taken together, the research suggests that it is possible for families to overcome this stressor and impact one other’s adjustment in a positive and meaningful manner.
How you can begin to turns things around, starting today…
Change is a process – it will not happen overnight. But, you can start on the path toward change for your chronically ill child, for yourself, and for your family today. One relatively easy thing to try in the short-term involves setting up a contract and reward system to motivate and reinforce your child’s compliance with his treatment regimen. Sit down with your child and discuss what would be motivating to him. Once you’ve identified this, develop a contract together that specifies what he needs to do (e.g., comply with a certain percentage of injections), how often he needs to do this (e.g., over the course of one day), and what you will do in return (e.g., increase computer privileges). Whatever you do, make sure that you each stick to what you’ve outlined in the contract. This will increase the likelihood that your child will learn to trust what you say and thereby increase his level of motivation to hold up his end of the bargain.
How we can help…
The recommendation described above is just one example of how you can start to successfully manage childhood chronic illness. At the Tarnow Center, our Chronic Illness Self-Management Program provides comprehensive diagnostic and treatment services to chronically ill children and adolescents and their families. To inquire about individual, family, and/or group therapy to help you and your family successfully manage childhood chronic illness contact Melissa Carpentier, Ph.D. at 713-621-9515 or by email: This email address is being protected from spambots. You need JavaScript enabled to view it.. In the meantime, please stay tuned for additional topics related to managing chronic illness in forthcoming newsletters and blogs on our website. See website for references.