What Are Your Priorities As a Patient with Pulmonary Fibrosis?

It is inevitable as we grow and develop throughout the years that our priorities will change. Throughout the last decade, which I believe is considered “young adulthood” for me, I have adapted mine seemingly hundreds of times. The greatest adjustment, however, came with my diagnosis of idiopathic pulmonary fibrosis (IPF), a life-threatening lung disease, at the tender age of 28.

Until my diagnosis of IPF, my priorities had aligned with those of my peers. They included securing our careers, spending time celebrating our friends’ milestones, and buying our first car or house. Many of my peers were focusing on finding their partner and getting married or “settling down.”

I was still in the career phase at the time of my diagnosis, but the others would follow shortly. Unfortunately, my course changed dramatically when IPF suddenly thrust itself into my life.

I remember being told that the doctors were unsure how my disease would progress, since I was so young. I was told that there might be no change over several years, or that everything could be different in a few months. Unfortunately, the latter statement was correct — within six months, I was lugging around oxygen. This left me very frustrated and sad. I’d go as far as to say I was depressed in the short term following my IPF diagnosis. During this difficult time, my priorities started to shift.

Suddenly, I was reevaluating everything that I’d considered important in my life before my diagnosis. Was working so hard to establish my career important now? Should I be saving as much money as I was? What about my dream of being a dog owner? Would a pet outlive me?

All these questions were running through my mind, and I had no idea which goals to emphasize now that I was living with an earlier expiration date than my peers. I felt lost and confused. This was a dark time in my life.

Thankfully, opportunities have arisen since my diagnosis that I never would have imagined, and along with them, friendships that I never expected. One instance is when I became a columnist with BioNews Services.

Connecting with other rare disease patients and having colleagues who understand what life with a chronic illness is like has been life-changing for me. Their stories and experiences have also inspired me to reevaluate what I consider to be priorities in my life. Things I used to think were important don’t matter to me as much anymore, and that has ultimately been a gift.

Recently, I had another pulmonary function test that revealed a decline in my lung function. This always sends me into a downward emotional spiral for a few days. Thankfully, I have recouped from it, but I am left pondering my priorities again. I also often wonder what other patients living with IPF choose to put first.

Here is my current list:

• Traveling: I am aware that seeing the world is not going to be an option for me forever. As my disease worsens, there will come a time when I will no longer be able to travel. Unfortunately, I have student loans, so my finances limit my options, but I’ve come to realize that my trips don’t always have to be extravagant. I can simply explore parts of my country and province that I’ve never visited before!

• Spending time with my dog: My 3-year-old golden retriever makes me so happy, and I need that happiness as I navigate this life-threatening lung disease. Therefore, I set aside time with her in the evenings. I also benefit from the quiet, as my days at work are very busy and filled with social interaction.

• Family events: I enjoy spending time with my family at our cottage in the summer and just relaxing on the beach. I’ve come to realize how important my family is to me and how important it is to be around them often. 

• Reading: In addition to appreciating the quiet weekends I get to spend at home, getting lost in a book helps me forget about some of the difficulties of living with IPF. Reading has proved beneficial for me mentally and physically, so I am now spending more time with some of my favorite authors. 

• Self-care: It seems obvious, but I never prioritized self-care in the past. Now it is extremely important to me and I don’t feel guilty about saying no to something that will jeopardize my time for self-care.

 What do you prioritize as a patient with IPF/PF? How have your priorities changed since your diagnosis? Please share in the comments below.

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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.