Posted By: Patient Advocate Summer Katz, M.A., NCC, LMHC

Change – it can be scary. So many thoughts and feelings that we experience both impulsively, as well as with great reflection, can create the fear of uncertainty. There are a number of examples of this in each of our lives; such as learning how to adapt to a new school, job, or town and even within a new relationship… or having a new baby and wondering, “What happens now?!”

We may think, “What if my baby is diagnosed with a chronic medical condition? How do I get all of the information needed to make sure my child has the best possible treatment to address his or her ailments?” These questions are from the parent’s perspective and they are just as valid as recognizing the difficulty and impact from the patient’s experience.

The fact is that during the childhood years, mom and dad generally take on much of the physical, mental and emotional responsibility for the child’s needs because the goal is to raise them, guide them and keep them safe. Unfortunately, so many of us connect the unwanted experience (i.e., being diagnosed with a chronic medical condition) with feeling unsafe. This experience of believing that danger is looming leads to coping with an all or nothing thought and behavioral response.

It is actually quite normal and common for parents to react to their child’s chronic struggle with overprotectiveness, then ultimately create a structure around the child’s treatment routine that may even become quite perfectionistic (or pursuing the all version of coping). It has been proven that positive health outcomes occur from good compliance and treatment adherence. This, based on the above theory, happens during the patient’s early years when mom and dad made sure that every medication and treatment was taken.

The parents of a child with a chronic medical condition ideally fall back on the support of the pediatric clinic’s medical team. The pediatric care that the child receives can be so acknowledging, supportive and personally validating. Those pediatric doctors, nurses and support staff make sure to do everything they can to guide you toward making the best healthcare decisions for your child.

The funny thing is, even your growing child/adolescent/budding young adult recognizes the support provided at the pediatric clinic. So, this can easily create factors of hesitation or resistance to move on to the adult center when neither one of you knows how your loved one will be treated under the care of this new arena. The truth is, that the clinicians at the adult clinic actually have the same level of motivation and interest in the patient’s wellbeing as those pediatric doctors. But, just reading these words do not make the transition any easier. And here are some additional reasons why…

Health exacerbations actually may rise during adolescence and early adulthood because patients are not nearly as on top of their regimen as their parents once were. This then caters to what many patients experience: feeling overwhelmed and unmotivated, leading to an “It’s too much, I give up,” procrastination perspective (which is ultimately the nothing aspect of coping).

It is not until the patient has become more accountable, insightful, and accepting that they are able to recognize the necessity of genuinely participating in their own healthcare – therefore impacting their own health outcomes. Patient issues such as wanting to be normal or desiring a simplified life can impact compliance and adherence of even the clearest treatment plans and goals.

This is where the need to explore and address adjustment issues during the transition becomes important. When children are encouraged to take part in the structure of their medical treatment in the early years, they can become more confident and develop skills to complete the tasks successfully on their own.

Whether it is involving them in medication preparations or ‘making a game’ out of completing a breathing treatment, parents have great opportunities to empower and encourage the child/adolescent/budding young adult as opposed to introducing an atmosphere of enabling and entitlement, inadvertently molding the quiet belief that, “Mommy or daddy is going to do it for me.” I realize that this sounds harsh, but trust me… I know all too well that the long-standing habit of parents jumping in and doing everything for the child can actually lead to avoidance coping in the long run.

In addition to my experience as a patient, I have seen my own parent’s struggle through the in’s and out’s of my chronic health diagnosis and it ultimately became a learning curve for each of us over the years (and certainly during the phase of moving from the pediatric to adult medical care).

Much of it boils down to one’s motivation and sometimes we can struggle to be ready and willing to engage in anything – let alone participate in a medical regimen that “we did not ask for to begin with.” So, this is where parents, caregivers and the support people in the patient’s life have to participate in healthy modeling, pick and choose your battles and apply a bit of that permission and credit equilibrium; encouraging their adult child toward the transition with reminders that “you can do this,” along with a motivating “go get ‘em” attitude.

My hope for you is that you do not default back to the all or nothing response to your own anxious experience. Adjustment is simply a part of process. It happens throughout the phases of life that we like and we don’t like, we want and we don’t want, or we hope for and even those we don’t expect. If we start to practice the opposite of that tension that we experience at any given moment, we just might realize that the comfort is found back in moments of relaxation, peace, and merely letting it go.

There are so many things out of your control. I emphasize this message to both the parents, as well as the patients. We all need to welcome our unresolved experience of fear and know that there will never be a quick fix to the frustration.

Sometimes, to best cope with the ongoing uncertainty, we actually just need to take a calculated risk. Taking a leap of faith is like jumping into the swimming pool and just knowing that you will be able to swim to the surface. What would it be like for you to consider trusting this new phase of the medical experience? Additionally, what if you (as the patient or as the parent) applied the concept of trust to the doctors and staff… to each other… to yourself?

What are some of your fears about the transition from pediatric to adult care? How would you like to make this inevitable part of the process work best for you and your family? Feel free to email me your thoughts at katzs@hhcs.com.

Summer Katz, M.A. NNC, LMHC
Licensed Mental Health Counselor
Cystic Fibrosis Pharmacy Patient Advocate

*Disclaimer: This blog is provided for informational purposes only (including brief topic exploration or reflection) and should not be used as a substitute for professional mental health or medical treatment.