Wrongly Perceived ‘Perks’ of Having a Chronic Illness

Wrongly Perceived ‘Perks’ of Having a Chronic Illness

An unfortunate reality of living with a chronic illness is that most people will never fully understand your experience. They can’t understand the complexity of living with a chronic lung disease or other debilitating chronic illnesses. Even when someone else has the same diagnosis as you, their experience likely differs, sometimes drastically. I’ve experienced this as a person living with idiopathic pulmonary fibrosis (IPF), a life-threatening lung disease.

The inability to understand leads to some inaccurate perceptions of what life is like for those of us living with a chronic illness. In conversation, friends, family members, colleagues, and even strangers try their best to look at the “bright side” of my IPF. They try to reframe it as a difficult experience or compare it to how much worse things could be. While this is well intended, it isn’t helpful for me, and I end up agreeing with them just to end the conversation.

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I really struggle with the people who wrongly perceive that there are “perks” of having IPF. These are some that I’ve heard of since being diagnosed with IPF:

  • Getting to sleep a lot: I’m confident that other patients living with a chronic illness, regardless of which one, experience crippling fatigue, too. I’ve found that it is impossible to push through my fatigue, so I give in when my body tells me that I have to nap. Others can perceive this as choosing to nap or having extra time to rest and sleep. The fact is, I don’t have a choice. If I push myself too far, I wind up either sick in bed or admitted to the hospital, so my excessive sleeping is actually a self-preservation method.
  • Having people do things for you: Back in May 2017, when I experienced the worst exacerbation I’ve ever had, I lost my independence entirely. I needed friends and family members to do things for me while I rebuilt it. People made me meals, cleaned my home, covered my tasks at work, and cared for my pets. As luxurious as this sounds, it was a horrible time for me. Asking people do things for you or accepting their offer is one thing, but being unable to complete the tasks you want to due to chronic pain, fatigue, or the inability to breathe is mentally agonizing. Although I’ve recovered from that exacerbation, there are things I still cannot do fully on my own due to the progression of my lung disease. Believe me, there are no perks to having someone else complete the tasks you desperately want to do on your own but can’t.
  • Working from home/working part-time: One of the most difficult things I had to accept after my diagnosis is that, at some point, working full-time would be too difficult for me. Sadly, that time has come. A part of my identity was wrapped up in my career, so no longer being able to excel at my job has left me feeling completely lost. I’ve heard people comment on how great it must be to be able to work from the comforts of home, and that part-time hours must enable me to do so much more. These also are not perks. I’m forced to work from home due to fatigue, pain, or shortness of breath. Losing the ability to work full-time and be good at my job has been very difficult.
  • Getting a disabled parking placard: Yes, having this permit enables me to park closer to a store entrance. Arguably, it also increases my likelihood of finding a parking space when a lot is nearly full. I have it for a reason, though: I’m unable to walk long distances without running out of oxygen. It’s not that I am lazy or just want to have the benefit of parking close to the door. While this does make my life a bit easier, I’d give anything to be able to walk and breathe like those who have healthy lungs. Getting a disabled parking placard as a young adult is not a perk — it’s embarrassing.

I would give anything to feel like the person I did before IPF crept into my life, and I do not consider myself or anyone else living with a chronic illness lucky.

Have you heard of any other wrongly perceived “perks” of living with IPF/PF? Share in the comments below.

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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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15 comments

  1. Michael DeFauw says:

    Charlene, I am sorry for all you must go thru at such a tender age. I too have IPF but your right, it is different for everyone.I am 67 so while this is an equally unwanted disease, I’m old enough to accept things better mentally and emotionally…sometimes.May you always have the strength and courage to go on. God bless.

    • Charlene Marshall says:

      Hi Michael,

      Thank you so much for reading my columns and getting in touch via email. Your kind words really mean a lot to me, thank you. This cruel disease is so unfair for anyone to deal with, may there soon be a cure for all of us! Thank you again for thinking of me and I wish you all the best.
      Regards,
      Charlene.

  2. Sara Everett says:

    Charlene, you’re right, there’s no up side to IPF. My husband went from diagnosis to death in one year. Even though he was 68, he hated becoming dependent on me for everything. He had always enjoyed good health and had many plans for his retirement. Towards the end, he admitted that he was jealous of people who could do what they wanted. If was very sad to see someone who had been so active shortly before, become focused on being able to breathe. You just do what you need to do to take care of yourself.
    D

    • Charlene Marshall says:

      Hi Sara,

      Thank you so much for reading my columns and getting in touch via the comments. I suspected this column might resonate for those of us “thrown” into the world of this cruel disease. I completely agree with you: no upside to living with IPF! So sorry to hear about your husband’s experience with it, and that the plans for his retirement were taken away by this disease. Thank you for sharing a bit of his story with us, and for your kind words. They really mean a lot to me! Take care, and sending you much love.
      Charlene.

    • linda waldschmidt says:

      @Sara, Sorry for the lose of your husband. Did he have a peaceful passing? I hope so. Was he on pain meds like mopaphine and anxiety meds? If so how long before his passing? What level of oxygen was he on? His went so fast. Did he have a lot of symptoms when he was first diagnosed? This is all new to me as I was just diagnoed in April this year. Any insight into this disease will be helpfull. Thanks Linda

    • Charlene Marshall says:

      Thank you so much Sara, as I am to you and everyone else who has this illness or cares for someone who does. Hugs!
      Stay well and feel free to connect anytime.
      Charlene.

    • Charlene Marshall says:

      I wish so too Chuck! Thank you for thinking of us all 🙂
      Hope you’re doing well my friend.
      Charlene.

  3. Linda waldschmidt says:

    @Sara, Sorry about your husband passing. Did he pass peacefully? His must of progressed very fast. What level of oxygen was he on? You posting about your experience with what your husband dealt with helps others dealing with this disease.

  4. linda waldschmidt says:

    @Sara I,m sorry but I had more questions and I didn,t think it went the first time I sent it. Thanks Linda

  5. Darlene says:

    My husband has been diagnosed less than 2 months and the disease is already progressing. His greatest grief is having to cause others so much more work and stress. Only thoughtless people would ever consider anything about this disease to be a perk. Unless, of course, they think that having a death sentence diagnosed is a perk!
    But you are so right that others cannot really understand. I have taken to having a pat answer whenever people, meaning well I’m sure, ask how my husband is doing. I almost always say, “He’s about the same”
    No one really wants to hear about the day to day struggles.

    • Charlene Marshall says:

      Hi Darlene,

      Thanks for reading my columns and reaching out via the comments, although so sorry you and your husband are having to deal with this cruel disease! Sorry to hear about his diagnosis. I share the grief and fear of your husband, and often worry about the intense care this disease is going to require from others as it gets worse for me. I also feel quite guilty about the learning my colleagues are having to do because I see that they’re scared. Just today I trained them on my respiratory emergency protocol and getting oxygen into me just in case…. it’s so hard! Sadly, I’ve heard people (as I wrote about in my column) talk about the things I listed as a “benefit”…. there is no benefit to living with IPF. It is an awful and very unfair disease! Hang in there, I know it is so tough but know that there are others out there who care and truly understand. Join us in the PF forums anytime: https://pulmonaryfibrosisnews.com/forums/forums/reply/19564/

      Charlene.

  6. Milton Toal says:

    I am 79 and was diagnosed in March while my Wife Elaine was in hospital having bowel surgery. I chose not to tell my children or grandchildren, nor my friends, neighbours and all but two of my colleagues so I don’t have to field comments about how I am. I propose to keep it that way as long as I can. In the meantime I am fighting hard with exercise and coping fairly well emotionally/mentally. Charlene, I would like to connect with you privately and share something which I cannot share publicly just yet if you would like to contact me at [email protected].

    • Charlene Marshall says:

      Hi Milton,

      Thanks so much for reading my columns and reaching out via the comments. I can understand your desire and approach not to tell many people about your diagnosis; I actually preferred to proceed that way too. It’s hard having to deal with the way people respond to the news, and inevitably, the way you’re treated differently. I’m glad you’re coping fairly well, that is good to hear. Feel free to reach out anytime if you need support. I will email you momentarily 🙂

      Regards,
      Charlene.

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