Making Decisions with Our Health in Mind

Making Decisions with Our Health in Mind

At some point in our lives, we’re all likely to face difficult decisions. They will force us to weigh out all the options, considering not only the pros and cons of each decision, but also the overall impact on our lives. Before I became sick with idiopathic pulmonary fibrosis (IPF), a life-threatening lung disease, I used to look at decisions as opportunities for growth or change and a chance to do something different. Now, I’m often overwhelmed by difficult decisions because I have to consider their impact on my health.

One of the hardest decisions I remember making was which university I would attend at the conclusion of secondary school. I was plagued by the difficulty of the decision; however, now that I am living with a chronic illness, I wish this was the most difficult decision I’ve had to make. I had very few factors to consider. The most important one was the ranking of the program I was accepted to. Now, I would also have to consider the city and the access to quality hospitals and healthcare, as my lungs continue to decline due to IPF.

I have shared in previous columns how much I love the ocean and being around large bodies of water. I find a sense of peace and a calmness in this setting that I’ve not been able to get anywhere else. Knowing the prognosis of IPF, I wish I could live by the ocean and experience this peace every day, but I could only afford to live on the east coast of Canada. The west coast, while beautiful, has some of the most expensive real estate in the country. That said, the east coast doesn’t have access to the healthcare and transplant center I will need as my disease worsens, so I can’t pursue this dream. Despite the benefit this move would have on my mental health, my physical health would suffer.

Unfortunately, I am now facing another difficult decision, and its impact on my health is at the forefront of my thoughts. In the PF News forums, we talk a lot about the difficulty of working while living with IPF. While working full-time has become physically exhausting for me, there have been more instances than I’d like to admit when my mental health was also affected, and I don’t think I can let it keep happening.

Just recently, as a result of something that happened at work, I had three nights when I was not able to sleep well. My mind was racing and I was upset. The inability to sleep jeopardized my ability to physically function during the day, and that compromised my health.

I’d argue that the decision to seek employment elsewhere is easier for someone without a chronic illness than for me, as a patient with IPF. Currently, I have a permanent position with benefits, vacation time, and flexibility to accommodate my illness. I am very lucky to be employed by an understanding agency; however, the impact one individual is having on me is becoming too daunting to deal with, and I am considering a career change. Once again, this decision is complicated by my lung disease and healthcare needs.

When it comes to a career shift, I find myself weighing the pros and cons. (It helps to write those out.) I cannot keep letting my mental health, and subsequently my physical health, be impacted by this person. With any career change, however, there is the risk that it might not work out, and the security of the paid vacation time, flexibility, and benefits could be jeopardized. I don’t want my disease to dictate my decisions, but the reality is that I have to think about my healthcare needs when considering such a drastic shift.

One of the invisible impacts of IPF is the mental fatigue patients face, so considering all the options of this decision has been tiring me out these past few weeks. One part of me believes this decision is the right thing to do because I need to prioritize my mental health, whereas another side of me thinks I am giving this individual too much power to impact me and that I shouldn’t jeopardize my permanent position and benefits because of them.

Have you had to make any difficult decisions where your health needs were heavily factored into the outcome?

If so, do you have any tips to share?

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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!

4 comments

  1. Bob Bovaird says:

    Charlene:
    My tip to share with you is under no circumstances should you let this individual influence your decision in any way. You are in a full time position with benefits (hard to find these days) and you are not only with a company that is aware of your condition but from previous of your articles, gives you their full support when they can. You have not elaborated on the specifics about this individual but I can imagine the kinds of things that might be happening.

    You could try sitting down with him/her to resolve the problem but if that is unlikely to change things or if you have tried this already, then you need to bring your human resources people or management into the picture. You are not the one who should be considering changing jobs; it’s the other party who should. You have my email address if you want to pursue this with me in more detail.

    • Charlene Marshall says:

      Hi Bob,

      Thank you so much for reading my columns and connecting via the comments. I also really appreciate your kind words, and suggestions around this very difficult situation. It is tough because like you say, employment that is permanent, with benefits and accommodating (for the most part) is hard to come by these days. And, I don’t want to jeopardize that with my health condition but it is also effecting my mental and emotional health now which is not acceptable either.

      The person I am struggling with and I have tried to sit down on multiple occasions and we always tend to feel better afterwards; more hopeful than things will work out but they tend to circle back to not working out. I’m tired of trying to talk it out, but certainly willing to try again so I appreciate your thoughts. HR and the Director are involved too, it is so hard cause they have to be fair to everyone, understandably. Everyone is trying their best but sometimes relationships are broken beyond repair, you know? I appreciate your kind words and being willing to talk this through with you. Perhaps I will email you with more specifics over the weekend. Thank you for that offer!

      Kind regards,
      Charlene.

  2. Patsy Goff says:

    Hello Charlene,
    My husband was in the mining industry for over 30 years and was diagnosed with ILD HIP patterning Dec.2017. He has a very aggressive type and has gone from 3L 02 to 6L at rest, 8L with exertion, and 9L with sleep.
    He had a severe photosensitive reaction while on Esbriet and had just begin Ofev.
    I am hoping you may help me contact Dr Hall as we are interested in starting the class 4 laser therapy as soon as possible please. We did more information for our chiropractor who has the laser.
    Any and all info is greatly appreciated.
    You are doing awesome work with this site and it is valued beyond measure.

    Perry Goff

    • Charlene Marshall says:

      Hi Patsy,

      Thank you so much for writing and reading my columns! I’m sorry to hear of your husbands HIP diagnosis, what a tough time it sounds like he’s had on the anti-fibrotic drugs too. How is he tolerating the Ofev thus far? Yes, I am happy to help! Dr. Hall’s email is: [email protected] … goodluck, I hope the laser therapy is effective for him. It is hard not to be skeptical when so many people have said that it has benefitted them, I haven’t tried it yet but think I am going to. Hang in there, and I hope you both are doing okay!

      Thank you for your kind words, we’re all in this together.
      Much love,
      Charlene.

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