An unfortunate reality of living with a chronic illness is that most people will never fully understand your experience. They can’t understand the complexity of living with a chronic lung disease or other debilitating chronic illnesses. Even when someone else has the same diagnosis as you, their experience likely differs, sometimes drastically. I’ve experienced this as a person living with idiopathic pulmonary fibrosis (IPF), a life-threatening lung disease.
The inability to understand leads to some inaccurate perceptions of what life is like for those of us living with a chronic illness. In conversation, friends, family members, colleagues, and even strangers try their best to look at the “bright side” of my IPF. They try to reframe it as a difficult experience or compare it to how much worse things could be. While this is well intended, it isn’t helpful for me, and I end up agreeing with them just to end the conversation.
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I really struggle with the people who wrongly perceive that there are “perks” of having IPF. These are some that I’ve heard of since being diagnosed with IPF:
- Getting to sleep a lot: I’m confident that other patients living with a chronic illness, regardless of which one, experience crippling fatigue, too. I’ve found that it is impossible to push through my fatigue, so I give in when my body tells me that I have to nap. Others can perceive this as choosing to nap or having extra time to rest and sleep. The fact is, I don’t have a choice. If I push myself too far, I wind up either sick in bed or admitted to the hospital, so my excessive sleeping is actually a self-preservation method.
- Having people do things for you: Back in May 2017, when I experienced the worst exacerbation I’ve ever had, I lost my independence entirely. I needed friends and family members to do things for me while I rebuilt it. People made me meals, cleaned my home, covered my tasks at work, and cared for my pets. As luxurious as this sounds, it was a horrible time for me. Asking people do things for you or accepting their offer is one thing, but being unable to complete the tasks you want to due to chronic pain, fatigue, or the inability to breathe is mentally agonizing. Although I’ve recovered from that exacerbation, there are things I still cannot do fully on my own due to the progression of my lung disease. Believe me, there are no perks to having someone else complete the tasks you desperately want to do on your own but can’t.
- Working from home/working part-time: One of the most difficult things I had to accept after my diagnosis is that, at some point, working full-time would be too difficult for me. Sadly, that time has come. A part of my identity was wrapped up in my career, so no longer being able to excel at my job has left me feeling completely lost. I’ve heard people comment on how great it must be to be able to work from the comforts of home, and that part-time hours must enable me to do so much more. These also are not perks. I’m forced to work from home due to fatigue, pain, or shortness of breath. Losing the ability to work full-time and be good at my job has been very difficult.
- Getting a disabled parking placard: Yes, having this permit enables me to park closer to a store entrance. Arguably, it also increases my likelihood of finding a parking space when a lot is nearly full. I have it for a reason, though: I’m unable to walk long distances without running out of oxygen. It’s not that I am lazy or just want to have the benefit of parking close to the door. While this does make my life a bit easier, I’d give anything to be able to walk and breathe like those who have healthy lungs. Getting a disabled parking placard as a young adult is not a perk — it’s embarrassing.
I would give anything to feel like the person I did before IPF crept into my life, and I do not consider myself or anyone else living with a chronic illness lucky.
Have you heard of any other wrongly perceived “perks” of living with IPF/PF? 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.