When I engage with the pulmonary fibrosis (PF) community online, I frequently hear about the difficulties of living with an invisible illness. Sometimes it feels nearly impossible to convey my experience of living with this chronic lung condition, which is characterized by progressive scarring of the lungs, shortness of breath, and extreme fatigue. Those closest to me try their best to understand the exhaustion associated with poor lung function, but they can’t fully comprehend it.
Many of my friends and family members offer assistance with tasks such as loading and unloading the car, walking my dog, and shopping for groceries. My lung function is about half that of a healthy adult, but unless I’m using my supplemental oxygen, I look capable of doing these things on my own.
Since my diagnosis with the idiopathic form of PF a little over three years ago, I’ve experienced many situations where people made assumptions about my capabilities based on my appearance. When disclosing that I need help with particular tasks, I become emotional. Because I am a young adult, I often feel that I should justify why I need assistance, especially when I’m in public environments such as airports or shopping malls.
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When I’m wearing my supplemental oxygen, attitudes toward my physical capabilities are drastically different, and I receive offers of assistance even when I don’t need help. My friends and family understand my limitations now. However, strangers make assumptions based on my age and appearance. Little do they know that these activities have become extremely difficult for me since my diagnosis:
- Climbing stairs: I’m sure that most people living with IPF would agree that this task becomes incredibly challenging as their disease progresses. While I can still manage stairs, I have to stop several times on the way up to catch my breath, so I prefer to take an elevator or escalator to save my energy. I am unable to climb stairs if I’m carrying heavy items. I also need time to take breaks, so multiple flights are impossible when I am in a rush.
- Talking while walking: When I am sightseeing or shopping with friends, I become extremely breathless within minutes when I try to carry on a conversation even when we’re walking at a leisurely pace. I wrote about my increased breathlessness in a recent column.
- Carrying heavy items: When I am shopping at a large department store, I always take up offers of help with large items. However, it is harder to ask for assistance at smaller locations, such as a grocery store. My requests for help are often met with disapproving looks, and I fear that people assume I’m lazy.
- Staying up late: I am notorious for staying up into the wee hours of the morning with my girlfriends, talking while enjoying a glass of wine. However, as my IPF progresses and my fatigue worsens, I can no longer stay up late if I have to get up early or have a busy schedule the next day. I need a full night’s sleep to ensure that I can function. Unfortunately, I believe that my late nights are coming to an end until after I receive a transplant.
- Standing in one spot: As readers might know, I’ve recently returned from a vacation in Hawaii. While traveling through airports, I noticed that I have difficulty standing in lines for extended periods. My muscles cramp and my joints ache. The pain is particularly severe in my feet, which tend to swell. I try to avoid standing still while waiting in a line by shuffling back and forth.
Do others make assumptions about your physical capabilities as a patient with IPF/PF?
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.