Some plans that helped me go back to school can still apply

Whether you’re 5 or 15, back-to-school season can involve all sorts of overwhelming factors when living with pulmonary hypertension (PH) or another complex illness. Along with shopping for school supplies and planning an outfit for school pictures, PH warriors also have to worry about medication management, energy allowance, and overall health maintenance.

These are a few things I did throughout my school years to help mitigate some of these concerns.

Facilitating conversation

Throughout my elementary school years, my mom came in on the first day of class to have a brief talk with my fellow students. She explained what made me a little bit different, such as the backpack I wore all the time because of my IV pump, and my occasional fatigue after playing. Since PH can largely be an invisible disability, this forward approach was helpful in unveiling situations I faced that my peers couldn’t see.

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It was also a time when my classmates could ask any questions they had, which prevented anyone from coming to their own conclusions or spreading misinformation about my condition. Of course, as we got older, most of my peers became familiar with my condition, and eventually, we stopped my mother’s ritual talk altogether. But in those early years, when my classmates and I were so young, the practice was beneficial and opened up healthy conversation about PH and how it made me relatively unique.

Other communication before the school year involved giving school nurses an updated rundown of my medications and an emergency protocol, as well as ensuring that my teacher was aware of how medical reasons, such as if I were feeling badly or had an issue with my IV pump, might cause me to leave class abruptly.

Advocating for accessibility

All schools are equipped to provide students with a 504 plan or an individualized education program (IEP). Families should feel empowered to approach their school administration to develop accommodations that will fit the needs of their child.

An IEP could include exemptions in gym class, for instance. I was never required to run the mile, for example, or complete tasks beyond my abilities. These accommodations could also include an extra minute or two when students transition between classes, so they never feel stressed or have to rush, especially in a large school.

Knowing my limits

Living with PH, I found it essential to understand my energy limitations, especially when I was sick. Students with my disease or a similar one shouldn’t feel guilty about staying home more than the average student, and they should feel empowered to request more time on assignments when needed.

Similarly, I found it vitally important to monitor my day-to-day symptoms and communicate with my parents and providers regarding any changes I experienced. In high school, for example, I noticed that the stairs there were becoming much more difficult for me, which indicated my illness was worsening. I couldn’t let changes of that sort fall through the cracks of my day-to-day life, even as I was juggling school activities and my routine PH care.

Make it work for you

Just as every child is different, so is every PH patient. Parents and their children should work together to identify the most significant school barriers and the available resources to lessen those burdens.

If you’re uncertain where to start, reach out to other PH families in the community to get ideas on accommodations and resources.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.