Chronic illness and transition to adult health care providers can be a challenging task for parents and teens. Working in a major children’s hospital, most of the teenagers I meet are faced with the daily struggle of living with a chronic illness. Some of these youth look ‘normal’ on first glance and others might fit the more stereotyped idea of an unwell child. Adolescence is tough enough to go through if you are completely healthy, but adding a chronic illness on top of that complicates things even more. This post isn’t meant to cover every aspect of living with chronic illness, but just to get parents thinking about how illness and disease can affect a teen that is living with it.
For any teen, peers and social life are a top priority. It’s a normal part of adolescent development to rely on peers and social interactions to help define what you do and how you act. Teens with chronic illness may constantly be having their social lives disrupted by doctors’ appointments, treatment therapies, nutrition visits, etc. They may struggle with the decision to even tell their friends about their illness, which can make some self care and recommended treatment approaches a big challenge. Imagine being a diabetic who requires insulin and not telling friends about it. How would you eat in front of them without someone noticing you’re giving yourself a shot of insulin before the meal? Being open about an illness may expose a teen to ridicule and bullying or just being viewed as ‘different’ from peers. This can lead to poor self-esteem, body image concerns, and even depression or suicidal thoughts.
Teens with chronic illness will also face the challenge of transitioning to adult care as they start to ‘age out’ of pediatric care. For parents, this can be extremely tough: they may have provided all the decision making and all of the communication to medical providers for the teen including making appointments, picking up refills on medications, even reminding the teen to take a medication or perform a treatment. For teens, the responsibility of being the sole person in charge of their own body can be daunting! They know and are comfortable with their pediatric providers; their parents may have taken on most of the responsibility for their health. Just the thought of going to the adult hospital where you have to pay for parking can be scary!
Transition to adult centered care and discussing chronic illness with peers are a topics to bring up early with your family and your teen’s medical provider(s). Here are some things you and your family can do:
- Start by passing along some of the responsibility. An example is to have your teen call to schedule a follow up doctor’s visit.
- Let your teen talk with their medical provider alone, then summarize recommendations to you at the end of the visit.
- Ensure your teen knows which medications they take, the dose, and what the medications are used for.
- Help your teen establish a support network of trusted peers. A great resource is here: Deciding and Telling About Your Health Condition.
- Check out websites like the Center for Children with Special Needs for resources on transitioning to adulthood.
Do you have a teen with chronic illness? What were some of the challenges you as a parent noticed that may have been different for teens without chronic health conditions? Have you and your teen begun the process of thinking about these life transitions? If so, what tips do you have for other parents of teens?