Managing a Chronic Illness Is a Full-time Job

Managing a Chronic Illness Is a Full-time Job
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I’ve held three full-time jobs in my career, each averaging about 40 hours per week. I’ve never tracked the number of hours I spend managing my chronic illness, but it wouldn’t surprise me if they equate to a full-time workweek. Since being diagnosed with idiopathic pulmonary fibrosis (IPF) three years ago, I’ve often felt as though I am balancing two full-time jobs.

The inevitable fatigue is not just physical. The brain fog and mental exhaustion from managing a chronic lung disease is difficult as well. And unlike most full-time jobs, we never get a vacation from our chronic illness. Unfortunately, the stress of a career can exacerbate the symptoms of IPF and perpetuate the cycle of exhaustion.

More than a year ago, I wrote a post on the Pulmonary Fibrosis News Forums about managing multiple medical appointments. I was overwhelmed by the number of appointments I had, along with arranging time off work and understanding what was discussed during each visit. I’ve learned that this is just one of the exhausting aspects of living with IPF, and one of the many job descriptions for patients with a chronic illness.

Following are other aspects of managing my lung disease:

  • Organizing medication weekly: I thrive with a to-do list. I tend to be more forgetful since my IPF diagnosis, so I write a new list every Sunday for the upcoming workweek. The list includes filling my medication box and organizing my pills for the week. This may seem like a simple task, but it takes time and there is no room for error. I have to pay attention and not rush when accomplishing this task.
  • Tracking medications and refills: Medications such as the two antifibrotics used to help slow the progression of the fibrosis are critical. Being without them for a long period can have negative consequences for a patient, so it is important to refill prescriptions before they run out.
  • Scheduling and attending medical appointments: Numerous medical appointments are inevitable when living with a chronic illness. Doctors’ and specialists’ appointments, diagnostic imaging, and pulmonary rehabilitation — to name a few — are time-consuming and exhausting. In addition to time spent scheduling and keeping track of these appointments, attending them can require a full day at a clinic or doctor’s office.
  • Calling for results or follow-up scans: Medical professionals do their best, but patients aren’t always notified promptly of the results of diagnostic imaging tests. It is up to the patient to track down someone who can access the results. That takes time. I remember calling a physician’s office for the results of a chest X-ray, only to be bounced through various offices and contacts before getting the answer that I needed.
  • Researching alternative medicines: Some patients prefer traditional Western medicine, while others take a holistic approach and seek natural remedies to help manage this disease. Doing the proper research on natural or alternative remedies takes time and effort.
  • Connecting with others about managing side effects: Patients living with a chronic illness often are plagued with hard-to-manage side effects. Speaking with others who are going through the same experiences can be helpful, especially if they have tips to help manage the side effects that you haven’t tried.

What other aspects of managing your chronic illness take up the most time for you as an IPF/PF patient?

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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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4 comments

  1. MaryEchberg says:

    Hi Charlene. I’ve bee following your news letters since the beginning of your diagnosis of IPF. IT has always been most inspiring. I was diagnosed with IPF in October 2015 which I must say devastated me (I was 69) In my 4th year I sought a second opinion at the ongoing request of my sons. The professor I saw could not make the same diag noses on the originals and nor the current CT scans. The relief was unbelievable. You mentioned you were going to visit Australia – I would be more than happy to offer you accommodation. I have a lovely one bedroom with bathroom etc downstairs (modern) in our home -thus happy to accommodate you. We live in Jindalee Queensland Australia. 15 minutes from Brisbane, just over an hour from the gold coast and one and half hours from the Sunshine Coast. Happy to chauffeur you around. Regards Mary Echberg

    • Charlene Marshall says:

      Hi Mary,

      Thanks so much for reading my columns and getting in touch via the comments. I’m glad you’ve been following my writing; I never imagined writing about a chronic lung condition as a young adult but having the opportunity to do so has been life-changing. Sorry to hear you’re also dealing with this cruel lung disease, it is awful, did the second opinion verify a different kind of lung disease? I’ve never been to Queensland, though it is on the list this visit hopefully 🙂 Sounds very beautiful — I’ll definitely be going to Melbourne and SA to visit friends. I’ll keep you posted on travel plans for sure. Thanks for offering and be well!
      Charlene.

  2. Leeann says:

    Hi Carlene,
    I was diagnosed with IPF in 2019. I am very interested in your Newsletter, I’m finding it difficult finding information on what is going on regarding research, new advances being made and how people are coping won’t the disease.
    Your story is so interesting to me, you sound like a remarkable young woman. I will look forward to reading your Newsletter!

    Leeann

    • Charlene Marshall says:

      Hi Leeann,

      Thanks so much for reading my columns and reaching out via the comments. So sorry to hear of your IPF diagnosis and that you’re learning to live with this cruel lung disease too. Yes, understanding research and new leads on medications or trials that can help us are overwhelming, I find. I rely a lot on: https://clinicaltrials.gov/ … and search for IPF. Hope this helps! Thanks for connecting, I’d love to get to know you more and feel free to connect after any columns/posts I make. I believe we’re better together when it comes to this disease!
      Hugs, Charlene.

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