Politely Informing Others of My Needs as an IPF Patient

Politely Informing Others of My Needs as an IPF Patient

younger than 30

Many patients living with chronic illness are considered immunocompromised due to the medications they take to treat their disease. This means that their immune system is not as strong as people who are healthy and that they can fall ill more easily. A patient living with a chronic illness can get sick more easily, and their illness may last longer. A common viral illness or infection for others could be detrimental to an immunocompromised person’s health.

For patients living with life-threatening lung diseases such as idiopathic pulmonary fibrosis (IPF), falling ill with the flu, a cold virus, or bacterial infection can be extremely dangerous. Unfortunately, I learned this lesson the hard way last year when a small cold turned into an acute exacerbation of my lungs. I was rushed to the hospital and my lungs were at risk of collapsing. Since this happened, I have become a lot more proactive in ensuring I stay healthy, even if that means missing out on social events.

The hard part about being proactive with avoiding illness is that I can only do so much. I can avoid crowds or social events where my exposure to illness is high, but I can’t always ask this of others who surround me and can pass on any sicknesses they catch. They don’t always know how important it is for me to avoid illness. It is hard to rely on others to help keep me healthy, but this is part of my new reality as a patient living with IPF.

Most of my close friends and family know about the importance of my health maintenance, but others don’t and it is always difficult to inform them of my needs as an immunocompromised patient. I try to do this as politely as possible without launching into my life story.

Unfortunately, the bottom line for me is that to stay as healthy as possible, I do need to inform others of my illness and ask that they do their part in helping me stay healthy. This is especially true of those around me on a regular basis, such as my officemates and my friends and family coming in and out of my home. Here are some of the things I need to ask others to consider when spending time with me:

  • Be cognizant of how you’re feeling: This should apply to everyone because we never know who is immunocompromised and the risk of spreading germs should always be minimized. I understand firsthand how frustrating it is to miss time from work or school, or how it can be difficult to find someone to care for your child if they suddenly fall ill. However, the inconvenience of staying home should never trump the possible exposure risk to someone who may fall critically ill from contracting an illness you’re carrying. If you’re sick, please stay home. Or speak up and let me know; I’ll take on the proactive responsibility of protecting my health.
  • Not smoking around me: Smoking is a personal choice, however, inhaling secondhand smoke is something that has landed me in the hospital via ambulance in the past. Asking people not to smoke around me or wash their hands after smoking when being close to me makes for an awkward conversation. However, it is important for my health. Therefore, I have to ask.
  • Covering your cough: Everyone should follow this practice to avoid illness exposure. Please cover your cough by following these tips to protect those of us who are immunocompromised.
  • Avoid handling my personal items: Did you know that one of the fastest ways viruses are spread is through handling mobile devices? It makes sense when you think about it: everyone handles their phone on a daily basis, and we share devices back and forth to look at pictures, text, watch videos, etc. So, when I ask others not to handle my phone or use my computer without first washing your hands, I am mindful of the potential transmission of germs.
  • Washing your hands before meal prepping: During previous illnesses, I’ve been lucky enough to have friends meal prep for me. I always ask them to make sure they wash their hands before preparing meals. This is tough because I don’t want to sound ungrateful. However, this is yet another task that can spread germs quickly.

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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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