Finding Comfort in the Chronic Illness Community

by Anna Jeter: For Complete Post, click here…

My grandma’s favorite story to tell about me is when I was 5 years old and she was staying with my siblings and me while my parents went on a short trip.

A home nurse was summoned one morning to take care of my central line and prepare the medicine for my IV infusion pump. According to my grandma, I was diligent in providing instructions to the nurse, making sure she performed every step correctly, from washing her hands with the right solution to removing the bubbles from the syringe.

After a while, the nurse exclaimed, “You sure are bossy for a 5-year-old!” My grandma got a kick out of this and never let me live it down.

The truth is, my early diagnosis with pulmonary hypertension (PH) demanded that I grow up more quickly than others my age. Perhaps part of it is my nature, but I believe my illness contributed a great deal to my old-for-my-age demeanor, which was contradicted by my small-for-my-age stature.

I think this is a shared truth among those of us in the chronic illness community. While I had a wonderful, joyous childhood, I also had an inherent sense of responsibility and awareness. If something went wrong, I had to be able to respond. When going off to school or sleeping at a friend’s house, it was my responsibility to communicate what was needed for my care in the event of an emergency. With chronic illness, we must become our own advocates, regardless of age.

While I’m grateful for the ways that this has shaped me over the years, it also sometimes made it difficult to be on the same page as my peers. Even now, as an adult, I find that I connect more with people over things like hardship and life experience rather than age or other commonalities.

Leave a Reply