The Power of Kindness in My Battle Against IPF

The Power of Kindness in My Battle Against IPF
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younger than 30

One of my all-time favorite quotes about kindness is: “Everyone you meet is fighting a battle you know nothing about. Be Kind. Always.” I liked this quote, which can be traced to Scottish author Ian Maclaren, before my 2016 diagnosis of idiopathic pulmonary fibrosis (IPF).

Kindness should come naturally to us. Humans have an innate desire to feel loved, appreciated, and accepted. However, practicing kindness is not always easy. I sometimes judge others; for example, when someone cuts me off while I’m driving or moves slowly when I am in a hurry. I am working on correcting my behavior, as I know these people could be living with an invisible illness or be having a really bad day.

Following my diagnosis with IPF, which is mostly an invisible illness, I have a greater appreciation for people who are kind. However, it is easy to get sucked into negative thoughts and sadness. I “should” be able to do everything my friends can but my body won’t let me because of this disease. I feel angry with those who seem to take their health for granted by engaging in behaviors such as smoking or vaping. I feel guilty about my anger, and the cycle of sadness and negativity continues.

To keep myself thinking positively, I think about the kindness others have shown me. Thinking about these scenarios brightens my mood and inspires me to be kind to others.

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Following are the three scenarios that I think about on difficult days:

  • In May 2017, I experienced an exacerbation of my IPF following a bacterial infection that invaded my lungs. It was my first extended stay in a hospital’s intensive care unit. As I was leaving the hospital, I met a nurse who had taken care of me, and she gave me a smile that was full of kindness. I wrote about that smile in a previous column.
  • In October 2017, I received the anonymous gift of a portable oxygen concentrator. These machines are very expensive to buy, and there’s usually a wait to get one from a supplier. I still don’t know who donated this device (though I have my suspicions), but it has changed my life. I couldn’t be more thankful for this person’s act of kindness.
  • Three months before my diagnosis I got a dog. She is the love of my life, and I’ve written about her in previous columns. I got her on a breeding contract: The agreement was that I could take full ownership after she had two litters of puppies. My dog has been my constant companion throughout my illness, even joining me during hospital stays. As my need for her companionship has grown, I have worried about being apart from her for the eight-week breeding cycle. Recently, I received a letter from the breeder officially releasing my dog from her breeding program and transferring ownership to me. She wrote that she didn’t want to disrupt the comfort and companionship my golden retriever brings me. I will never forget her kindness because I can’t imagine my life without my dog.

Have you been touched by the kindness of others since your PF diagnosis? Continue this discussion in our PF forums.

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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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9 comments

  1. Patricia Quinn says:

    I read every thing I can about this desease.To me it upsets me that no one has come up with any medication that has a benefit to those of us with PF.The meds they offer are not good for all.Seems like this deease has been around for many years and we are the forgotton ones.

    • Charlene Marshall says:

      Hi Patricia,

      Thank you so much for writing to me, and voicing your concerns about feeling like we’ve been the forgotten ones… I certainly share in this concern with you. I try to put my trust in the dedicated MDs and researchers who are working to find a cure or better treatment options for IPF, but it is frustrating knowing how much we’re impacted by the terrible side effects of this disease. I sure hope there will be a medication soon that works in stopping (better yet, reversing) the scarring in our lungs. I’m keeping my fingers crossed!
      Hang in there,
      Charlene.

  2. Liz Jones says:

    My husband has IPF and I am in a quandary about what to do for him. His military time has provided a great help at this time – oxygen, walker, manual wheelchair – doctors, nurses, and technicians who care. But, he has anxiety attacks in which his eyes widen and he struggles and shakes uncontrollably because he can’t breathe. It seems to me his condition is worse each day. He struggles and is breathless going to the bathroom or moving from room to room. He is now refusing to take showers because he says it takes too much out of him. I retired last week from a job I loved because he is so important to me and our family. How have some of you overcome struggles especially the ones I mention?

    • Charlene Marshall says:

      Hi Liz,

      Thanks so much for reading my columns and contributing to the comments, although I am so sorry to hear of the struggles that your husband is experiencing with his IPF. I’m glad the military time has proved helpful with what he needs in terms of devices, equipment, oxygen and care from nurses, etc. However, I can certainly understand the anxiety that comes from living with this disease; it is really terrifying not being able to breathe. Certain activities really do take a lot out of us, but I wonder about his supplemental oxygen needs, is he getting enough / when has this last been assessed for him based on the progression of his disease? Perhaps he is not getting enough and his oxygen needs need to increase to help his fatigue and stamina a bit better? Curious to hear your thoughts on this.

      Charlene.

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