You would be hard-pressed to find anyone who hates pulmonary fibrosis (PF) more than the patients living with it and their caregivers. This chronic and debilitating disease, characterized by progressive scarring in the lungs, is cruel and relentless.
PF affects much more than the ability to breathe — it also has a significant impact on the emotional and mental health of patients and their loved ones.
Before my diagnosis of idiopathic pulmonary fibrosis (IPF), I knew little of the emotional effects of chronic illness. It’s hard to summarize the feelings that come from being ill, from the losses you endure, and from the difficult experiences your loved ones face.
As readers will know, I am slowly recovering after several weeks of serious illness that required hospitalization and lifesaving interventions. My physical abilities have declined, and I need more help than before. I find the guilt associated with this to be overwhelming at times.
People have asked me why I feel guilty when I didn’t choose to become ill and I didn’t do anything wrong. The reality is that having IPF means being immunocompromised and more susceptible to catching viral and bacterial illnesses. Despite my best efforts, I ended up sick.
I strive to let go of guilt, but to do that, I need to understand why I feel guilty in the first place. Following are some of the reasons I have felt overwhelmed by guilt since my latest health setback:
- Increased caregiving needs: I hope that when I recover from this acute setback, I won’t need as much assistance as I do now. I know there is a chance my lungs will not regain their function, and I will remain dependent on others. Hopefully, I’ll eventually recover some of my independence. Family members have given their time as well as their physical and emotional energy to help me. I find it hard to avoid feeling guilty about the burden I have placed on them.
- Financial dependence: Living with a chronic illness has many financial implications. Medical and other costs add up. Health setbacks and acute illness can prevent us from working to earn a living. We might have to rely on our parents or others to help us out financially. Sometimes that assistance feels undeserved or inappropriate, even when we offer skills or services in exchange for their help.
- Emotional outbursts: Unfortunately, no rulebook exists to teach us how to live with a fatal illness. Sometimes trying to cope with the challenges becomes overwhelming. I’ve lost count of the number of times I’ve said something I didn’t mean because I was emotionally exhausted or anxious about something related to my disease. In those moments, I don’t recognize how my words could be hurtful to others, but afterward, I experience remorse about my anger. My emotional outbursts can also be due to “steroid rage.” Regardless of the reasons, patients still feel guilty.
- Exhaustion that hinders social activities: Have you ever been so exhausted that you’ve dozed off during an important meeting? This often happens to patients living with IPF due to physical or mental exhaustion. Nodding off at the wrong time is embarrassing and leaves you feeling guilty.
- Being immunocompromised: Due to my intense fear of getting sick again, I’ve taken what some might perceive as extreme precautions to avoid others during cold and flu season. Sometimes this means missing out on social activities or celebrations altogether. Other times, it means asking those who are sick to avoid coming to work or to events to reduce germ exposure. I have a lot of guilt due to being immunocompromised, especially when I have to ask others to refrain from doing things due to my medical needs.
What do you feel guilty about as a patient with IPF/PF? Please share in the comments below.
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.