As an IPF Patient, My Mood Sours When People Tell Me to Rest

Learning to live with a chronic illness is the hardest thing I’ve ever done in my young adult life. It’s stressful mentally, financially, socially, and emotionally. That’s in addition to the difficult physical challenges. Sometimes that stress manifests in ways I’m not proud of.

Since my diagnosis of idiopathic pulmonary fibrosis (IPF), a progressive and life-threatening lung disease, I’ve noticed changes within myself. Some of these changes are due to anxiety, but others are harder to understand. It can be hard to admit sometimes, but I find myself increasingly losing patience with others. This may be due to my cruel lung disease or perhaps a result of the COVID-19 pandemic and the long periods of social isolation that are necessary to keep me safe.

In addition to being less patient with others, I’ve also been experiencing increased irritability. This is likely due to the physical exhaustion from IPF, as living with failing lungs leaves patients fatigued in many ways. That irritability can be prompted by something someone else does or says.

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As my disease worsens, it’s obvious to others that I’m struggling to keep up with tasks, and friends, family, and colleagues are noticing my physical exhaustion. Naturally, they encourage me to rest when this happens, and while they mean well, I’m sometimes triggered by the word “rest.”

There’s more to it than rest

What those who’ve never experienced IPF don’t understand is that rest really doesn’t help with some of the difficult IPF symptoms such as shortness of breath, fatigue, or chronic dry cough. This disease is different from many other chronic illnesses because the problematic part of the body can never rest; our lungs always need to be working no matter what the rest of our body is doing.

Since I was an active child and still struggle to sit still as a young adult, I’m convinced that people think I just don’t want to comply when they encourage me to slow down. That was true early in my diagnosis, because I didn’t want to give in to the disease, but unfortunately it’s changed over the years.

To help others understand why resting won’t help me, I try to explain that living with IPF isn’t like having a broken leg or another type of injury that heals with rest. I mention that even lying on the couch for a few hours or taking naps throughout the day won’t really give my lungs a chance to rest because they must continue to function.

After this explanation, people tend to understand, but don’t have an alternative solution to offer, because unfortunately there isn’t one. While I usually don’t mind explaining why rest doesn’t make me feel better long-term, sometimes I’m irritated by having to explain it.

Are you triggered by something others say? I’d love to hear your thoughts in the comments below or at the Pulmonary Fibrosis News Forums. 

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.