Longing for Normalcy

In my career, I am privileged to offer children and families support in some of their most vulnerable moments. These include times when children are experiencing bullying, trauma, or grief. When a child is being bullied because they are different, their parents and caregivers regularly make the comment, “Normal is so overrated.”

In many situations — especially when children need encouragement to be themselves — I agree with this message. Still, it always leaves me thinking about how abnormal my life has become as a young adult living with a terminal lung disease. Following my diagnosis of idiopathic pulmonary fibrosis (IPF), I find myself longing for normalcy.

When a child is being bullied on the playground because they differ from social norms, I say kudos to that child for being unique. When someone prioritizes their happiness over others’ expectations, I applaud them for their bravery. However, when it comes to a life of chronic illness, I wish more people understood my deep desire to be just like every other young adult.

Sometimes, I embrace my lung disease and see it as an opportunity to educate people and advocate for others living with this terrible illness. At other times, all I want is to forget about IPF and live a normal adult life. I vividly remember past conversations with my friends and colleagues in which they referred to a time in my life when I’d no longer have to deal with IPF. Unfortunately, that day will never come.

Even following a successful lung transplant, I will live an abnormal life of taking large amounts of medication, dealing with the risks of being immune-compromised, and fearing organ rejection. The abnormalities I live with on a daily basis now, as a young adult, will simply be swapped out for others following a lung transplant.

Despite all this, I consider myself lucky to have lived nearly three years with IPF, enjoying that time with my friends and family and being able to travel. I am also grateful to have built many new friendships through the PF News Forums. Though I still long for normalcy, I think it’s important to highlight some of the abnormalities those of us with IPF experience.

• Being covered in bruises: Any patient with a chronic illness can attest that a lot of bloodwork and IVs are required to keep us healthy. More than once, when someone has seen my arms, which are covered in small bruises from needles, I’ve wondered what they were thinking. It is not normal to wear a long-sleeved shirt during the warm summer months to cover up bruised arms.
• Prioritizing medical appointments and medication regimens: Most other young adults prioritize their social events on weekends. I focus on following my medication regimen and keeping scheduled medical appointments. This feels really abnormal to me, especially when I’m asked what my weekend plans are. I wish I was prioritizing social events with friends. My life is made easier, though, if I avoid those types of gatherings and rest.
• Long-term hospital admissions and weekly clinic trips: When I jokingly ask my close friends to accompany me on a road trip, they know I’m not thinking of a fun destination. I am hoping they will drive with me to the hospital or clinic, a couple hours away from my home. Long hospital stays do not enable me to have a normal work schedule. This compromises my ability to find a good work-life balance, which is the focus of many of my peers.
• Maintaining sterile access points: I have a port-a-cath in my chest, just below my collarbone, that needs to remain sterile when it’s being accessed. Following an exacerbation of my IPF in May 2017, I also received a PICC line. Knowing that these devices provide direct access to my bloodstream, I am persistent in keeping them clean and sterile to avoid infection. It is abnormal for a young adult to know how to change a sterile dressing or to obsess over whether or not these access points are clean.

What abnormalities have become part of your daily routine as a patient living with IPF/PF? Do you long for a life of normalcy since being diagnosed? Share in the comments below or in our forums.

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Note: Pulmonary Fibrosis 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 Fibrosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.