Why Pulmonary Fibrosis Can Make Me Feel Guilty

Why Pulmonary Fibrosis Can Make Me Feel Guilty

younger than 30
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?

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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.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!

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