As one of my beloved healthcare providers always tells me, “There is no rule book for living with pulmonary fibrosis.”
She says this when we talk about my constant frustration of living with a life-threatening illness, and the unpredictability, anxiety and emotional turmoil that comes with it. The emotional and psychological symptoms are in addition to the physical symptoms.
One of the more exhausting emotional symptoms is guilt. Being diagnosed with idiopathic pulmonary fibrosis has changed a lot about my life. I could list hundreds of reasons why I carry around guilt, but let me discuss a few prominent ones.
Reasons I feel guilty from IPF
Relying on financial support from my family: Thankfully this does not happen often, but I don’t think it will last. One of the medications I need is very expensive. Even though I have savings, I need to reserve them for transplant expenses, which include relocation costs, medications and living expenses while I am unable to work.
My parents recently helped me pay something I was behind on. Although they said they were happy to help, I am aware of the financial impact that helping me could have on them. My parents are close to retirement. I’m worried that needing their help in the future will disrupt their retirement plans.
I am constantly looking for medication alternatives, such as Trillium Health Benefits, research grants and trials. This takes a lot energy, on top of what I devote to the daily tasks of working and living.
Keeping friends from their families when I need their help: After my most recent setback, I was grateful for the many visits I had from friends. I am also aware that if friends are with me, they are away from their families, including young children. I feel guilty about this. Even though my friends say they want to spend time with me, I can’t help but wonder how their kids feel about their parents not being with them.
Needing to be accommodated and helped at work: I am privileged to work for an organization that encourages flexibility. I can work from home and flex my hours. And I’m comfortable requesting what I need to complete my daily tasks, without fear of raised eyebrows.
But I have needed a lot of accommodation lately, so I’ve been encouraged to work primarily from home, as long as I can complete the assigned tasks. I know this is a luxury that more of my colleagues would prefer, and I feel guilty being home while they are in the office. In addition, I often need help with the physical tasks of my job, and that takes my colleagues’ time away from their own work.
Being unable to keep up with family commitments: This one is hitting me hard today because my nephew is beginning his first soccer season. I loved watching my older nephew develop his skills to that point that he became the amazing player he is today.
My youngest nephew will be 5 years old tomorrow, and I think he will be a stellar player as well. I had intended to drive to the soccer field to watch him play his first game this morning. But the weather is not fantastic, plus I had a bit of a rough night, and I just don’t have the energy to go watch.
I feel guilty about this because I said I would go. I know my family understands, and my nephew will be too distracted with the game to notice my absence. But I am still hanging onto the guilt of wanting to be there while being physically unable to. This is just one example of being unable to keep family commitments I would like to honor.
Can you relate to the thoughts, worries, and fears that contribute to the guilt I feel about IPF?
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.