I May Appear to Be Well, but It Doesn’t Mean I Am Coping Well

I May Appear to Be Well, but It Doesn’t Mean I Am Coping Well

Advocacy and discussions about mental health on social media platforms feel very “trendy” at the moment. It’s a good thing — it is vital that we talk about mental health and raise awareness about the need to care for our minds as well as our bodies.

As a patient living with idiopathic pulmonary fibrosis (IPF), a life-threatening lung disease, I would like to see more advocacy and discussions about caring for your mental health while living with a chronic illness. While I may often appear to be well, inside I am not coping.

Thankfully, most days are good rather than bad, and I use coping strategies on the difficult days. However, I admit that I still have a lot to learn when it comes to caring for my mental health. Sometimes the thought that most of my family members and friends will outlive me overwhelms me, and that adds to the grief over physical things I have lost over the years as my lungs decline.

The progression of this disease often feels out of control. I’m not used to this feeling of powerlessness. Before my IPF diagnosis, I had always been in control of my life and choices. But this disease is out of my control, and on days when I have the most uncertainty, my coping skills are severely lacking.

Some of my fellow BioNews columnists living with lung conditions have written about the movie “Five Feet Apart.” I’ve watched it a few more times since its release on DVD. I’ve found myself identifying with one of the lead characters, Stella, about her obsession with trying to control her disease and manage her medications. She puts a lot of pressure on herself and breaks down at various points in the movie. Her portrayal has illuminated my need for control over my disease. I ponder what I can control in a life that sometimes feels unpredictable.

My colleague Tré LaRosa wrote a column about learning to prioritize his mental health while working full time. He has helped me to realize that caring for my mental health is one thing I can take charge of. I have a choice about how I respond to requests and prioritize my days. Sometimes I get overwhelmed easily and am quick to react. While it’s not intentional, I think that my response comes from my awareness of the persistent threat to my health and erratic nature of this disease. I need to work harder at prioritizing my mental health and coping skills to allow myself to live more successfully with IPF.

Prioritizing where I invest my time and energy is an ongoing challenge for me. In January, I wrote about my New Year’s resolutions focusing on myself. I think I’ve recently lost sight of this when I became overwhelmed with everything that’s on my plate. Now it is time for me to revisit the importance of caring for my mental health.

While I have to learn this for myself, I hope that others will understand that though I appear to be well, it doesn’t mean I am coping with my disease. Aside from supplemental oxygen, much of the reality of living with IPF is invisible, including a patient’s ability to deal with the anguish of having a life-threatening illness.

Be kind to one another and gentle with yourself. Ask for help when you need it. Having any chronic illness is hard, and it’s easy to lose sight of prioritizing our mental health needs. While I appear well on the outside, I may be crumbling on the inside.

What are the resources you turn to for support when the ability to cope with IPF/PF seems to be out of control?

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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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8 comments

  1. Judy Krasovec says:

    I still try to do most things, but at different times and less of it. I go to lunch movies shopping and I have to space the days and etc. By still being able to do most things ,even if short times seems to help.

    • Charlene Marshall says:

      Hi Judy,

      Thank you for reading my columns and reaching out via the comments, it is nice to hear from you! I like your approach of still doing everything you want to do, but spacing them out to give your mind and body a rest. I find I have to be strategic now when I have lots of things to get done, as an example: I plan out my week every Sunday to determine what I need to do and when I can do it, based on my week at work, etc. I find it a lot easier to plan in advance then reactively need to do things but be too tired, sore, short of breath, etc. Being able to do things on my own is really good for my mental health too! 🙂 Thanks for writing and sharing your thoughts. Hang in there!
      Charlene.

  2. Bill Ecton says:

    Hi Charlene,

    When I’m having a bad day I try to focus on God. I think upon the greatness, the kindness, and the peace of God.

    Let yourself grow quiet as you reflect upon His love, His grace and mercy!

    God bless you Charlene!

    • Charlene Marshall says:

      Hi Bill,

      Thank you for reading my columns and reaching out via the comments – it is always nice to hear from you! I’m really glad the comfort of God, and his peace makes your days a little better, hang onto your faith, that is so powerful. Reflection, quiet and appreciation is so important on this journey. Thank you for sharing your kind, gentle thoughts.

      Kindest regards,
      Charlene.

    • Charlene Marshall says:

      Hi Catherine,

      Thanks for reading my columns and reaching out via the comments. Like you, I try to be most productive in the morning and then do less in the afternoon and rest if that is what I need. Glad this works for you!
      Take care,
      Charlene.

  3. Steve Dragoo says:

    Hi Charlene,

    That is a great one-word definition of IPF – erratic. Even my best days I still have a caution flag out to slow down and remember breathing is not optional.

    Fortunately I have a good friend in the USA and can talk to him frequently. Even though he and my wife do not understand this disease, they are empathetic. And of course I talk with my sweetheart regularly about this insidious disease because it is hard to deal with and recognize IPF has a time limit.

    Even better, outwardly focusing on others. As I age that becomes a little easier to see the spiritual dilemma we are in so reading and studying the Bible with my family daily helps me become more useful. Impacting family for their future is more important then they (we) know.

    I appreciate all you do for us on PF News.

    Stay well…
    Steve

    • Charlene Marshall says:

      Hi Steve,

      Thanks so much for your comments on my column – as always, it is great to hear from you!

      Yes, ‘erratic’ is one good descriptor word for this darn disease! We never really know what each day is going to bring and like you, I always feel as though I proceed with caution due to the unpredictability of it. For me, that is one of the hardest things.

      The one jewel of information I hang onto is the fact that there are lots of people living far beyond the ‘time constraints’ of this disease (ie. the 3-5 years) and are still doing quite well. I do hope that will be my experience with IPF!

      Take good care and stay well!
      Charlene.

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