I’ve spent a lot of time reflecting these last few weeks. I don’t know why — I haven’t hit any special milestones such as a birthday or diagnosis anniversary. But I’ve been thinking about the adversity I’ve faced since my diagnosis with idiopathic pulmonary fibrosis (IPF) as a young adult.
Sometimes the grief caused by the losses from this disease overwhelms me. However, I have moments when I appreciate that I can still accomplish a lot while living with IPF. I have to take a different approach and make accommodations, but I can create and follow through with plans that are important to me. I resolve to remind myself of this during the emotional turmoil that’s inevitable while navigating life with a fatal lung disease.
I recognize how different my life is now compared with the years before my diagnosis. I’m aware of my physical and mental limitations. However, my friends sometimes need a gentle reminder. Unless I’m wearing supplemental oxygen, they can forget that I have a chronic illness and expect me to be able to do as much as I previously could. When they realize that I can’t keep up, they work hard to alter their plans around my needs and include me in social events. Unfortunately, the reality for me is that my health often dictates my plans.
This concept can be difficult for others to understand, especially those who don’t have a chronic illness. They might question how a disease can dictate social plans, especially on my “good days.” I’ve been thinking about how to explain this to my close friends.
Following are some recent examples of how IPF can dictate my social plans:
- Reducing exposure to germs: Many patients living with IPF take immunosuppressant medications. One of these is CellCept (mycophenolate mofetil). Those who are post-transplant may be on tacrolimus as well as other immunosuppressants. Because IPF is a lung disease, I must avoid exposure to any respiratory illness. My friend is getting married in September, and I’m looking forward to her bachelorette party. I can participate in the daytime portion of the event, but the night component includes going to a club. Though this is a normal activity for young adults, I’ll have to skip this outing. My medical team would be furious if they knew that I had exposed myself to all the germs in a crowded public space.
- Adjusting to heat and humidity: Dealing with extreme temperatures — whether it’s hot or cold weather conditions — is difficult for people with IPF. In the summer months, I love spending time at our lake house. This summer I’ve noticed that I am more severely affected by the heat than in previous years. I’ve made some adjustments, which include bringing supplemental oxygen with me and limiting my time at the beach when humidity is high. I recently wrote about the topic of overheating — a new symptom — on the Pulmonary Fibrosis News Forums.
- Elevation and air quality: I struggle to breathe even in ideal conditions, so I need to modify my itinerary when traveling to areas with poor air quality or high elevation. One example is my upcoming trip to Hawaii. I’m disappointed that I won’t be able to visit some of the main attractions, including the Road to Hana on the island of Maui.
- Fatigue: Those living with a chronic lung disease experience intense fatigue. It feels like my body is running a continuous marathon, and by the end of a workday, I am exhausted. I often miss out on after-work activities such as going out for dinner with my colleagues, which is part of our company’s wellness initiative.
How does your IPF/PF dictate your social or daily plans?
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.