Learning to live with a life-threatening, chronic lung disease as a young adult is the hardest thing I’ve ever done.
Idiopathic pulmonary fibrosis (IPF) is characterized by irreversible and progressive scarring of the lungs, known as “fibrosis,” which ultimately diminishes a person’s ability to breathe. While the prognosis of IPF was previously only three to five years, this estimate is now considered to be outdated, and experts say that the survival rate is unpredictable.
Since my diagnosis of IPF three years ago, I’ve had to learn to do many things differently. Thankfully, I can still confidently say that while many things are harder for me, nothing is entirely impossible yet. I’ve recognized the importance of pacing myself when it comes to both physical and mental activities.
I was a very active and busy person before my diagnosis, so this lesson hasn’t come easily to me. But I know that when I don’t heed my body, it forces me to rest — sometimes I get sick and require hospitalization.
While I’ve gotten better at pacing myself, maintaining balance is an ongoing challenge for me. I don’t know if I will ever master it, but I’ve picked up some tips along the way. I am privileged to know many other people with IPF through the PF News Forums and other online communities, so I thought I’d share my advice in the hope that it helps others.
Following are some of my tips to help you pace yourself:
- Take frequent breaks: While this may seem obvious, patients with IPF often consider only the physical effects of the disease. I’ve written about my mental fatigue, which happens as a result of chronic under-oxygenation and physical exhaustion. When I’ve been working longer hours than I should, I notice that it affects my mental clarity and ability to problem-solve and plan various tasks. Taking frequent breaks is essential for my mental health as well as my physical well-being.
- Reframing language: A work colleague who holds the position of organizational development lead recently discussed the connotations of the word “try.” They asked, “How often do you use this word? Did you know that from a professional development perspective, the word ‘try’ indicates that completion of the task is unlikely?” I use “try” all the time, and I had thought that others believed me when I told them that I would try to do something even when I knew it might not be possible. This experience has made me more aware of the words that I use and determined to commit to only those things that I know I can do. For example, I use statements such as, “I will complete that task,” instead of, “I will try to.”
- Set realistic expectations: My close friends and family describe me as a classic overachiever. I have high expectations of myself, and I believe that others do as well. However, I now have physical limitations and need to be realistic with myself about what I can manage. I also have to communicate openly and honestly about my capabilities to help others set reasonable goals for me.
- Learning to say no: This is a work in progress for me. I don’t like to say no due to my fear of missing out. Turning down something that is unimportant helps to conserve your energy for meaningful activities. If you fear missing out on an opportunity, I suggest saying, “Not right now,” instead of declining. Putting something off allows you to avail of the opportunity at a later time while prioritizing what you need to take care of at the moment.
- Asking for help: My lung disease will inevitably progress, and some tasks will become impossible for me to do. When this happens, I will have to ask for help to pace myself and conserve my energy for carrying out the essential tasks.
Do you have any other tips for pacing yourself as a patient with IPF/PF? Please share in the comments below.
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.