Finding Comfort in the Chronic Illness Community
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.
This is compounded by the fact that an average day for me differs quite a bit from that of a typical 26-year-old, in terms of the medical care I require. For years, my priorities have been different than those of a person my age, which can make me feel isolated.
I seek mutual understanding where I can find it. With PH, this has meant connecting with others my age in a similar fight. I found many of them at the Pulmonary Hypertension Association’s biennial conferences, which my family often attended. The relationships I discovered there were invaluable.
Today, examples of these commonalities are the woman on social media who is a mother and a wife, and on a ventilator at all times. Or the mother sharing her daughter’s journey with a tracheostomy. And of course, all of my fellow heart and lung transplant recipients, a truly unique club.
Through it all, I’m eager to hear the stories of others and to share mine. In doing so, things become much more familiar. Comfort is found in these connections in the chronic illness community.
I am incredibly blessed by my own close-knit community. My relationships with family and other loved ones are strengthened by our shared experiences. Those who care for me deeply have helped to carry my many worries. In this, I have discovered intimate love and a life that is much different than what others may know.
I wouldn’t wish the burdens of chronic illness on anyone, but I’m infinitely humbled to witness the tender fruits that these burdens bear. A mantra I repeat to myself often is: “There is goodness here. There is.”
***
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.
About the Author
Comments