You Just Can’t Have It All With Idiopathic Pulmonary Fibrosis
Idiopathic pulmonary fibrosis (IPF) is a cruel and greedy chronic illness. I’ve had to accept this, albeit begrudgingly, since being diagnosed with this life-threatening and debilitating lung disease in 2016. Just how cruel and greedy IPF is has become more apparent in the last couple of years as my disease progresses and my symptoms worsen.
The lack of energy a patient with IPF experiences is not captured realistically in the literature on this disease, in my opinion. When I spend time looking up symptoms of IPF, I commonly see things like breathlessness, clubbed fingers, or fatigue. You may equate fatigue with lack of energy, but as a patient living with IPF, I consider them to be different.
I’m regularly fatigued, I certainly won’t try to deny that, but the lack of energy I’m referring to is when my mind wants to do something, but my body just can’t. It doesn’t mean I’m tired and want to sleep; it just means I need to do something where I’m not exerting a lot of energy, such as lying on the couch reading or watching a movie. This happens a lot, especially while trying to balance working full time.
In my seven years of living with IPF, I’ve had to realize I just can’t have (or do) it all. I haven’t fully accepted this fact, but IPF forces you to make sacrifices due to energy limitations. Often, especially as a young adult trying to make a living and thrive in my career, my energy must be reserved for work, which compromises social or other important activities in my day. This can feel like a vicious cycle.
When I’ve had a busy workday, for example, I sometimes don’t have the energy to cook a healthy meal for dinner, though I know my body needs it. Since eating healthy is one of the important things I can do to continue fighting IPF and manage medication side effects, I’ll often order in something healthy for dinner. As you can likely imagine, the cost of ordering in a healthy meal is not cheap given inflation these days, and I already have added costs due to this cruel lung disease.
Another sacrifice I often have to make is choosing which social events I can attend with friends. This decision isn’t taken lightly; I have to weigh the importance of the event, such as a wedding or other milestone, with the risk to my immune system, especially given the COVID-19 pandemic. I just can’t afford to get sick right now, so the number of people present at an event is factored into my decision. While my friends say they understand this, I know it’s hard when I have to decline an event that’s important to them.
I recently attended a weeklong management retreat with the rest of my team, where we were focused on what we needed to do as leaders of an organization. Since we are new to working together, this retreat was also an opportunity to socialize and get to know one another outside of work. I wanted to give the sessions my undivided attention and effort, which took a lot of mental energy, and I was exhausted by the end of the day. Sadly, this meant I had to sacrifice an evening event as a result.
As a team we decided to go see a live performance of a musical, something I’ve been wanting to do for a long time. I was the only one who chose to wear a mask at the venue, and I was also the only one who had to bow out at intermission; I was just so tired from the day. While driving back to the hotel after only seeing half the stage performance, this notion of not being able to have it all or do it all because of IPF was reinforced.
I try to give my mind and body some grace when things like this happen, but it’s hard. I’m in my early 30s; I should be full of energy and capitalizing on social events with friends and family. But this cruel and greedy disease doesn’t permit that. I hate this disease, and I pray daily for a cure for me and all of you reading this column who are likely plagued with the compromises IPF also forces upon you. Hang in there!
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.