Thinking Differently: Ways My Perspective Has Changed Post-diagnosis

Thinking Differently: Ways My Perspective Has Changed Post-diagnosis

Being diagnosed with any type of life-threatening illness will inevitably change a person. This is especially true when there is no link (i.e., genetic predisposition) or reason to think that anything could be wrong, or when the illness is unlikely to target someone due to their age.

That was my case when I was diagnosed with idiopathic pulmonary fibrosis (IPF) three years ago. According to everything I read online, along with what my doctor shared, IPF was stereotyped as a disease of the elderly. It was unusual that I was diagnosed with this lung disease at 28 years old, although I am slowly learning that young adults living with IPF are not as rare as people might think.

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Since receiving my life-threatening lung disease diagnosis, I’ve begun to think about some things differently than I did before. I also act and choose to live my life differently since IPF crept in. Just last month, I wrote a column about priorities as a patient with IPF and how mine have changed. Today, I’m reflecting on the things I think about differently and comparing my current perspective to my life before IPF.

  • What I post to my social media pages: Many social media platforms, like Facebook and Instagram, have a feature that brings up posts you’ve shared to your account in previous years as “memories.” I never thought I’d use or like this feature, but since I was diagnosed with IPF, I enjoy looking back on things I did when my life was drastically different from how it is now. Not only do I enjoy looking back, I intentionally post things that will eventually become a memory for my loved ones if and when I succumb to this disease. There is a feature on some social media sites that lets you memorialize a page after someone has passed away. My friend who lost her husband had his Facebook page turned into a hardcover memorial book, which is a beautiful way to share his life and the things that were important to him. I think differently about what I post to social media, recognizing that someday it will likely tell the story of my life.
  • Using my phone in the presence of friends: This shouldn’t be something we have to intentionally think about, but sadly, it is. If you look around at people sharing a meal in a restaurant, you’ll often notice they’re glued to their phones and not enjoying the company of those they are with. I was often guilty of this prior to my diagnosis, but now I put my phone down when I am out with others. Quality time spent with friends and family is my priority, and I don’t feel as though I can offer that when my phone is out.
  • Looking ahead/anticipating next milestones: I think it is natural to anticipate upcoming milestones, like birthdays, anniversaries, or weddings. I used to have this mindset, but since my diagnosis of IPF, I’ve stopped anticipating these events and try harder to be present in the moment.
  • Accepting what I can’t change: I used to be really bothered by situations that were beyond my control and by the fact that I couldn’t change an outcome. Since being diagnosed with IPF, I’ve really learned a lesson in acceptance. I think differently about certain situations now, and work hard on just accepting things I can’t change. I also try harder to reframe situations from negative to positive, as this helps me cope. While I might not be able to change the outcome, I can control how I react to it, and this gives me a bit more power.

What things do you think about differently since your pulmonary fibrosis diagnosis? I’d love to hear from you!

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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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5 comments

  1. Following the very recent death of my beloved aunt due to IPF, I now wish to unsubscribe from this website.
    Could you please advise how to do this, as I do not see a link to such.
    Many thanks

    • Charlene Marshall says:

      Hi Brad,

      Thank you so much for reading my columns and connecting via the comments. Yes, I will be considered for a transplant once my disease reaches a certain point/deterioration, per the process of my local transplant center. Thanks for inquiring, and I hope you’re doing well.

      Regards,
      Charlene.

  2. Suzanne says:

    I believe my diagnosis was just before yours – late January of 2016. initially, I told only close friends and family members as I was still working and felt it could hamper what I was anticipating was the end of my career. Now I am more open with more distant friends and former co-workers. I have not yet “come out” on social media as I am not ready for the pity party that will likely ensue from well-meaning acquaintances.

    Thoughts on this from others?

    • Charlene Marshall says:

      Hi Suzanne,

      Thanks for writing and sharing your thoughts a bit on this topic. It sure is a tough one to navigate, isn’t it? It took me awhile to be comfortable enough to share my story with friends and some extended family members. It was really hard, and a bit surreal: I felt like I was just regurgitating someone else’s story, not mine. Slowly it became more real and I couldn’t hide it once I was placed on oxygen periodically about 4 months after my diagnosis. Like you, I still rarely share my disease on social media and try to maintain a normalized life online as much as possible. Glad you are comfortable with being more open with your friends and co-workers; it does make things easier but it is a process to get there. I’d love to her from others on this topic too!

      Charlene.

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