Raising Teens With Chronic Illness
by Linda Bevec
Ten to twenty million children and adolescents in the United States have some form of chronic illness or disability. Chronic refers to a health condition that lasts anywhere from three months to a lifetime. (www.healthychildren.org) ARPKD/CHF is chronic, progressive and lifelong; a disease full of much uncertainty as no two children seem to be affected in exactly the same way.
When my daughter was younger, I made the decision to talk openly with her about her chronic disease and help her cope with all the uncertainties, invasive procedures, pain, sickness and lack of control by being her advocate and facing each and every moment with her. We’ve been a team rallying together as mother and daughter against the adversity of a horrible disease and facing it with strength, determination, hope, joy, a sense of humor and a lot of faith.
I’ve often wondered over the years how she will cope as an adolescent when the teenage years bring on additional turmoil and turbulence to even the littlest of things. Will I have taught her the best coping skills? Can she transition into the adolescent years with a chronic disease and remain as happy and resilient as she was at age eight? Will she know how to take care of herself?
My daughter will soon be 15 years old and these first few teen years have honestly been a bit rocky; okay, maybe even tumultuous. In addition to the normal challenges that most teenagers go through, children growing up with a chronic disease are bound to hit many more bumps in the road. It’s not that I didn’t expect something to be different than the smooth adolescent transition of my easy-going17 year old son who is healthy as a horse, I just didn’t know WHAT to expect.
Here are some of the things I’ve noticed based on how my teenage daughter with ARPKD/CHF has transitioned through adolescence so far:
Denial: An example of denial is the teen who insists on riding her horse very fast and wanting to learn how to barrel race even though her kidneys, liver and spleen are enlarged and her mother is completely neurotic. Or, not drinking the recommended 2-3 liters of water each day to keep her newly transplanted kidney healthy and happy. Or, the transplant patient who goes off the college and decides she doesn’t need to take her meds all the time. Suppressing the reality of a chronic health condition is an effective coping strategy that allows people, especially teens, to go on living “normal” lives (whatever they think normal is). Denial becomes a problem when it leads to dangerous outcomes, which this particular mom thinks could certainly happen more often than not. This is a difficult one to manage as a parent, but important to work through before your teen is out of the house. They have to face the reality of their disease, take charge, and be responsible.
Intellectualization: This defense mechanism, probably more often seen early in the adolescent years, is partial denial. The teenager accepts her condition and can display deep knowledge about it, but chooses to block out how she feels about it, or may even insert partial fiction about living with the disease to make the facts more acceptable and appealing. Intellectualization can be useful when it gives the child time to sort out and deal with her emotions. But if it persists, the adolescent may never truly come to grips with her chronic disease in a healthy way. She may also fall into the pattern of shutting out all uncomfortable feelings. For example, my daughter rarely makes eye contact or converses with doctors. We’ve talked about being respectful and looking at doctors when they talk to her, but I think it’s always been her way of shutting out unpleasant information or painful experiences ever since she was little (she used to pretend to read a book when doctors came into the room and was so absorbed she couldn’t hear them).
Regression: When going through difficult health situations, even the most outwardly resilient teen may revert to childish behavior. Regression provides temporary escape from painful or stressful situations. My daughter has curled up in a fetal position in her dad’s arms when feeling stressed. She sometimes holds on to her almost thread-bare baby blanket in the weeks both before and after a surgery, illness or hospitalization. I personally don’t worry about it and certainly don’t shame her for it either. In time, I figure she will learn to cope with the stress in a more mature fashion. I don’t blame her at all for feeling scared and seeking comfort with something she both loves and cherishes. But I do try to get her to talk and sort out her feelings too.
Acting-Out Behavior: This is where I have been worn down the most. Defiance, disobedience and testing limits at home and at school are all expressions of a teen’s anger, lack of control and depression over her chronic illness. I can say first-hand that acting-out behavior is most often hurled at the one parent who is most involved in the day-to-day medical care, which in my case is me. My husband manages a multitude of other things like the insurance, the bills, the prescriptions, etc. But I’m always the one “in the trenches” so to speak when it comes to our daughter’s direct care. I am not always her favorite parent, but I think she will eventually see what a challenge this disease has been for me too. And I resolve to stay the course with as much loving patience as I can muster. I know her anger may be directed at me, but her anger is not about me. I have to repeat that mantra often. It’s about an ugly disease that she can’t escape from, ever. And I hate too.
I’m learning my way through how to live with this disease one day at a time as a mother. I am not a mental health professional by any means and suggest that any parent seek the help of a mental-health expert to prevent things from spiraling out of control….for the health of the parents, their marriage, the family, as well as the teen. We should never be ashamed or embarrassed to do so, if this is needed. Seeking professional help teaches our children to reach out, open up and seek healthy ways to learn and grow from adversity and live happy lives in spite of all they face living with a chronic disease.
