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

A columnist confronts the irritability caused by her chronic illness

Charlene Marshall avatar

by Charlene Marshall |

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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.

Comments

Barbara Short avatar

Barbara Short

I also suffer from IPF. I am a lot older than you. I guess I could never understand why after I ‘rested’ I was still fatigued. After your explanation I get it. It’s always nice to hear what other patients think and feel.

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Barbara J Blair avatar

Barbara J Blair

My husband recently died of IPF after a diagnosis 4 years ago. I was his caretaker the entire time and he was on oxygen 24/7. I encouraged him to explain to me how he felt, especially on days when he could hardly breath as I felt I was not doing a good job taking care of him. He did not want to talk about his illness which was very difficult for me both as wife and a caretaker and I felt very isolated throughout this time - Your letter was a good education for me even after the fact - thanks for sharing - it helped me immensely! Best to you!

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Elizabeth Price avatar

Elizabeth Price

My spouse has IPF and has become very irritable with my questions and offers to help. I understand she does not want to talk about her illness or anything related to the disease. Still, I miss being there for her. The less I say or do, the better. I am realizing she has to manage the stress on her own. Thanks for your post. Every reminder to give our loved ones space is a good one. Also thanks fir your response Barbara Blair. This isolation creates such a helpless feeling in me. Im trying to inhabit a “here if you need me” mental space.

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Steven Dragoo avatar

Steven Dragoo

Hi Friend,

I need more rest and can't find it while working nights for the USA time zones. Soon I will need O2 24/7 BUT I am grateful (most of the time (a work in progress)) for that which I have. Yep climbing the stairs and out of breath - if someone said just rest I might find a pushing exercise helpful (as in whoops you fell down the stairs) as a valid response - See "I don't need no stinking rest". If you ever watched Blazing Saddles that last comment will resonate.

Blessings...
Steve

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Zoila Castro avatar

Zoila Castro

I suffer from IPF and was diagnosed over 15 years and now I am 78 years old. O2 to 3 O2, 7/24. It gets me extremely insane when friend
ask me to go to bed and sleep. It sounds to me like they want to leave and do not want to say it. I believe in God
and know He has help me to deal with IPF and God will help me until the end. Blessings to all of you.

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conni borwick avatar

conni borwick

I often feel like screaming,rest doesn’t help! As you mention even lying on the couch I still have to breathe.
I am trying to figure out ways to exercise as some days I just don’t have the energy which is the most frustrating for me since I was so active . So I understand the irritable ness and short temper when normally that is unlike me,then I get frustrated with my self. What a mess.

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Jill Crystal avatar

Jill Crystal

My husband finds the spoons metaphor helpful

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Colin avatar

Colin

I suffer from a different but still severe lung disease and feel frequently irritable. My doctors say it is because of carbon dioxide retention. Hypercapnia apparently affects the brain in uncertain ways to cause increased aggression. But some say it also relaxes patients. Who knows?

Stress must also play a key role.

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