Even With IPF, I’m Still Privileged
Given the various unfortunate events happening around the world, including the evolving war between Russia and Ukraine, I’ve been reflecting on the many ways my family and I are blessed. At times, I’ve been guilty of not realizing my privilege.
I’ve always had the basic necessities, including a roof over my head, nutritious food to eat, warm clothing for the cold Canadian winters, healthcare, and insurance coverage. The same goes for my family. No one has suffered a devastating loss, dealt with serious health issues, or faced significant adversity, such as a war or a natural disaster.
In 2016, I was the first in my family to be diagnosed with a debilitating and life-threatening disease. I felt like I was regurgitating someone else’s sad story when I told my loved ones I had idiopathic pulmonary fibrosis (IPF). Nearly six years later, I’m still not sure whether everyone truly understands the reality of my disease, which includes eventual lung failure.
Facing adversity is always difficult, regardless of privilege. While certain aspects of privilege may not be in our control, such as the family we’re born into, it’s our responsibility to be aware of those aspects and how they shape our lives. I’m learning to recognize the ways in which I’m privileged, but I’m also realizing that having IPF makes me a bit of an outlier among my healthy family members.
Following are several ways in which my disease sets me apart from my loved ones.
In theory, having IPF means I have less time than my healthy cousins. My family understands that I prioritize traveling because doing so might not be possible as my disease worsens. On the contrary, it makes sense for other young adults to prioritize things like buying a home, getting married, or having kids. I never intended to follow that trajectory, but having IPF makes my choice a little more understandable.
As a patient living with IPF, I also deal with side effects of the anti-fibrotic medication I take. No one else in my family has had to take a medication that causes terrible gastrointestinal symptoms. None of them have had to take their medications in the middle of Christmas dinner or ensure their skin is fully protected from the sun while enjoying a beach day.
Having IPF also means that I am immunocompromised and can’t attend family gatherings if there’s a possibility that someone there could be sick. While this may be a minor inconvenience, our family never had to think about these things before my diagnosis.
The pandemic has opened our eyes to the importance of preventing the spread of illness. I recently got very sick with COVID-19 for the second time, and it was difficult for many of my loved ones to comprehend the severity of my situation. For them, COVID-19 felt like a typical cold.
Having a life-threatening lung condition has also had financial implications. While my medication and oxygen supplies are mostly covered by insurance, there are additional out-of-pocket expenses — not to mention the times I miss work because I’ve fallen ill or have to attend a doctor’s appointment. My family has not had to face the same financial burden due to their generally good health.
These differences are small prices to pay for living with, not in spite of, IPF, but they’re still things my loved ones don’t have to think about. It’s a privilege not to have to worry about these health-related issues. Although my challenges pale in comparison to current global crises, they serve as important reminders to check our privileges.
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.