The Importance of Offering Ourselves Grace Along the IPF Journey

Indulge me for one minute and think of some of the firsts you’ve experienced. What comes to mind? Is it the first time you tied your shoes? The first time you held your firstborn? The first time you drove a stick shift?

If you flawlessly executed that last one on your first try, then let me congratulate you. If you didn’t, what was your response? Did you offer yourself grace?

PF is a journey of firsts

Following my January 2017 diagnosis of idiopathic pulmonary fibrosis (IPF), I soon discovered that on this journey, firsts would come along fast and often for both patients and caregivers. Some you pick up quickly, while others require several attempts to master. New firsts may come up as PF progresses, or when the patient returns home post-transplant.

Patients may be frustrated by new challenges, limitations, and medical procedures. If your physical capabilities are impaired, you may need assistance with even routine daily tasks. For some, seeking assistance may be a first.

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As an IPF patient, I didn’t always get tests right the first time. I recall one swallow test where I drank a liquid and was asked to swallow on command. It took me a few attempts to get the timing down.

In pulmonary rehabilitation, I had to be reminded several times early on about proper weightlifting techniques. In my defense, I have never enjoyed weightlifting as a form of exercise.

Once I was extubated following my bilateral lung transplant in July 2021, I took my first breath on my own with my new lungs. It was an anxious moment for me, but after that breath, I didn’t look back.

Caregivers also experience their own firsts on the IPF journey, often finding themselves in a new role. My wife, Susan, became my second set of eyes and ears in medical appointments and learned to change an oxygen cylinder and clean incisions like she’d been doing it all her life. The truth is, those things were new to her.

Susan also found herself taking over most tasks outside our home, in part because of the COVID-19 restrictions my care team implemented. It was Susan’s first time doing many of these tasks.

Our loved ones experienced some firsts also. For more than two years, we didn’t allow people into our home. This was a significant change for many close friends and family who were accustomed to simply walking in. Visits began taking place on the porch, with more than 6 feet of separation between us.

Mastering grace

While the concept behind many firsts is simple, the execution can be far from it. Regardless of your role, you may feel frustrated trying things for the first time. That’s OK. Please give yourself and those around you some grace.

My journey has led me to be more mindful about this, as IPF can be an incredibly humbling disease. I admit I haven’t mastered it completely and am a work in progress. Still, I believe that as I continue to grow, I become better at providing grace to those around me.

Five years into this journey, with a bilateral lung transplant behind us, Susan and I are still experiencing firsts. We still get frustrated, but we can now laugh at ourselves and commit to getting better at whatever the challenge is. We try not to allow the frustration to get the better of us. That is grace.

Ironically, I have learned that giving myself grace is the hardest challenge. I think this is true for many people with pulmonary fibrosis. We’re often hardest on ourselves and more critical of our performance than we need to be.

The concept of grace is simple, and although mastering it takes some practice, it’s worth the investment. Susan has helped me improve tremendously. If she sees that I’m frustrated by a challenge, she’ll simply say, “Grace.” It immediately alerts me to be gentle with myself. Grace is another tool that helps me make every breath count.

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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.