There’s no need to apologize for changes in our abilities

“I’m sorry” is a simple, two-word phrase I’ve used many times. For me, it can take two forms: It can be a statement of regret, or it can be a question. Because of my hearing loss, I use the latter to indicate that I need someone to repeat what was said. But throughout my journey with idiopathic pulmonary fibrosis (IPF), I’ve often issued the phrase as an apology.

Even before I was diagnosed with IPF in January 2017, I used the word “sorry” far too frequently. Primarily because of my cough, which I later learned was a symptom of IPF, I found myself apologizing at work for having to stop speaking during presentations and for disrupting or stepping out of meetings.

Early on

I blamed that early cough on seasonal allergies, though it lasted year-round. That cough eventually led my wife, Susan, to insist I ask my primary care physician to order a chest X-ray. The fall of 2016 was the beginning of my path to diagnosis.

The chest X-ray indicated that something was wrong, but it took several months before the diagnosis was confirmed. Yet I continued to say “I’m sorry,” even though I recognized my cough was beyond my control.

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As my IPF progressed, “I’m sorry” became more of a crutch. When I told my leadership team and then co-workers about my diagnosis, I apologized because I felt I was letting them down at a critical time for our company. Later, when I told my colleagues that my doctors had recommended I stop working, I again felt the need to say I was sorry, as I’d brought our team together and elicited high performance.

Apologies continued throughout the pre-transplant phase of my journey. When the distances on my six-minute walk test began to decline, I wanted to apologize to my care team; despite all they were doing, my body was letting me down.

When I needed to rest during social events and when I could no longer complete tasks around the home, I felt compelled to say I was sorry. Susan picked up many of those chores. One particular event that bothered me was watching her shovel snow from our driveway while I was unable to help. She was fine with it, but I apologized and thanked her in the same sentence.

Following my bilateral lung transplant in July 2021, the apology tour continued. When I couldn’t stand up independently immediately following my surgery, it felt necessary to apologize. It was humbling as an adult man to have to ask for assistance with a bedpan. That required an apology, I thought.

Did it, though?

The challenges of IPF are already difficult enough to manage. I should’ve recognized sooner that apologizing for every change in my abilities wasn’t necessary.

IPF affects each of us differently, but it often affects what we’re able to do. My life changed after my diagnosis and I became differently abled. (I dislike the term disabled, as I feel it lumps everyone into too broad a category.) Accepting these changes reduced my compulsion to apologize for being unable to participate fully in everything I once could.

For example, one of the biggest changes was that I needed mobility assistance some days as my disease progressed. I’d use a mobility scooter to move around, especially when Susan and I were out for extended periods. I had no idea how humbling a scooter would be. While I was able to spend time with Susan outside our home, she often had to remind me to slow down.

Post-transplant, I had to use a cane for a period. However, I no longer felt the need to apologize for moving at a slower pace. For me, this aid was a sign that I was getting stronger and regaining some of my mobility. Today, I no longer use my cane.

Dealing with a cough, mobility issue, or other physical challenge is no cause for apology. When I’m around people who don’t know about my illness, instead of saying I’m sorry, I now use those moments as opportunities to educate and increase awareness of IPF and transplants. The more I learn on my journey, the more I’m able to help others understand the challenges our community faces.

Don’t be sorry for the things you’re no longer able to do. Celebrate what you can do. Celebrating those abilities with you is how I can 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.