One of my biggest fears after being diagnosed with idiopathic pulmonary fibrosis (IPF) as a young adult was losing my independence. In previous columns, I’ve talked about how I regularly participated in work and volunteer roles throughout the years, building a large network of friends and colleagues. Some described me as “the Energizer bunny” because I’d be busy from sunrise to sunset, and I loved it.
After IPF crept into my life, I was fearful that I’d lose my ability to be as fiercely independent as I had been growing up. While I am still self-reliant in many of my daily tasks, sometimes I wonder if this has worked against me as my IPF progresses.
An invisible disease
One of the most difficult things about this disease is that it is invisible. Many people have no idea how much a patient with IPF struggles to breathe. Sadly, that struggle is sometimes perceived as laziness. When I am wearing my supplemental oxygen, many people are willing to help me. It might be holding a door open, or asking to load my groceries into the cart. While these tasks are greatly appreciated, the caveat is that I don’t need this help only when I am wearing my oxygen.
When I am running errands, going to work, caring for my dog, and preparing meals, it is hard for someone to know that I could use their help. The truth is, I would always welcome a hand with any of these tasks, even on good days.
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I regularly struggle with finding a balance of wanting independence and needing assistance from others. I know that wearing my oxygen will let others know that I am feeling tired or breathless, and they are more likely to offer their help. That said, I also don’t want to wear my oxygen too often and have my lungs adjust to always having that support to breathe. My fear is that my lungs will decline faster if I always coddle them by using oxygen. The difficulty is that people think I don’t need help when I am not wearing my supplemental oxygen. Am I doing myself a disservice because others presume I am doing well and don’t need their help? It often feels this way.
Understanding the struggle
To the caregivers, friends, or family members of patients living with IPF, I wanted to write this column to help you understand the struggle many of us face with this invisible disease. We want to maintain our independence as long as possible, and we want to push our lungs to remain strong, which sometimes means not using our supplemental oxygen. It doesn’t mean we don’t need your help. We would welcome assistance with any of the tasks we’re still able to do, allowing us to conserve more of our energy.
As my disease progresses, certain tasks that I used to do have become difficult and I’ve had to learn to ask for help. Where I struggle most is wanting independence, but knowing the assumptions that I don’t need help will frustrate me. This is likely true of all patients living with IPF/PF, but I’d love to hear about your experiences.
Does your ability or desire to be independent obstruct the help you need, and otherwise might receive from others?
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.