Explaining your diagnosis to others

Your healthcare team

You will likely be provided with a great deal of unfamiliar medical information in the months following your diagnosis. It may be helpful to maintain a dedicated journal and write down all of your questions to discuss with your physician. Use the journal to take notes during all your appointments to inform other members of the healthcare team. Knowing as much as you can about your situation will empower you as you move forward.

Sharing at school

Living with a PI can affect your child’s education. They may be absent more which can lead to falling behind on school work and missing time with friends. If their school day is not affected by PI, it is up to you whether you say anything to the school about their diagnosis. However, it is important to tell your school about your child’s condition in the following situations:

• They are absent or expect to be absent more than other students. 
• They take medication at school. 
• They need accommodations or adjustments made to their day, like more frequent restroom visits or rest breaks during physical activity.

If any of the above apply, you will want to meet school staff to explain your child’s PI and develop a written plan. Most parents of children with PI do not view their child as having a disability. You probably feel the same way. However, if you want the school to provide an accommodation, you should identify your child as having a disability since federal laws include requirements for how schools should respond if a student’s learning is affected by a health condition.