Back to school with a chronic illness

Getting ready to start a new school year can be a time of anxiety and even stress for any family, but especially those families who are managing a chronic illness.

In the weeks before school starts, it can be helpful to begin transitioning back to a school year routine — that might include going to bed and getting up earlier, maybe even shifting eating schedules to more closely align with the school day.

If it will be a new school for a child, visiting the school before the year starts can help ease a lot of anxiety. Finding things like the bathrooms, cafeteria and classrooms can help kids feel more comfortable. For older students, it can also help to talk through scenarios before they come up to help them plan. Situations like what to do if they forgot their lunch, left their medication at home or other common scenarios can help kids feel prepared and better able to handle the unexpected moments.

Even if there is a 504 plan in place, parents still need to be proactive and talk with teachers, administrators and even the school nurse about their child's condition and help them understand what they might expect during the school year. Don't assume they are familiar with the condition or how to manage it in the event there's a medical situation. A letter from the child's specialist can be helpful, along with an emergency plan if necessary. And, don't be shy — sometimes it can be uncomfortable to ask for assistance, but parents are their child's best advocates. It's important to speak up and make the child's needs clear and continue to stay in touch throughout the school year.

To help classmates understand their condition, a letter from the child to classmates or teacher can help. A pediatric pulmonologist who works with Cystic Fibrosis patients shares an example letter that his patients have used:

My name is [John], and I am going to be in your class this year. I am so excited to start school this year. I am an average little boy. I love playing with toys, pretending to be a superhero and making things with playdough. There is something that is a little different about me. I have a genetic disease called Cystic Fibrosis or CF. CF is a progressive genetic disease that affects the lungs, pancreas, liver and other systems due to a genetic default in the CFTR gene. Because of this, you may see me taking a pill every day before lunch and snacks. When I'm running around a lot or being very active or sometimes for no reason at all, I will cough and sometimes, it's a lot. But I promise I'm not sick. It is just my body's way of trying to get out the mucus that builds up in my lungs. Because of my CF, it is also very important that I am not around anyone who is sick, since what might be just a little cold for you, could mean days or weeks in the hospital for me. So please if you are sick, think about me before coming to school. I want to be like everyone else and be in school with everyone, but I need to stay healthy too.

Thank you,

[John Doe]

Children can also learn to how to be assertive and ask when they need something — whether that's a water or bathroom-break, a snack, or to visit the school nurse. It may be difficult, especially for shy children, but role-playing can help them feel more empowered and confident when approaching a teacher or school staff.

Through open communication and planning, families and educators can help ensure a safe, healthy and productive learning environment for children throughout the school year.