What I Need from Others as a Patient with Pulmonary Fibrosis

What I Need from Others as a Patient with Pulmonary Fibrosis
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younger than 30

As news of a life-threatening illness diagnosis makes rounds in a community, it is common for people to ask the diagnosed patient, “What do you need?” This question can spark anxiety in patients, especially in the first few weeks following their diagnosis as they adjust to a new reality.

After my 2016 idiopathic pulmonary fibrosis (IPF) diagnosis, I didn’t know how to respond to that question. In those first few weeks, I didn’t know what I needed, aside from space to process life changes. Over the past two years, I’ve learned to live with my disease and I am coping much better than I thought possible. IPF has even created opportunities that I’d never otherwise have. I am grateful.

I am now aware of what helps me. Following are some of my needs:

  • An authentic interest in how I am doing: Please genuinely care when you ask how I am doing. Sometimes I feel as though people ask this by social habit rather than an actual interest in how I am coping. In October 2017, I wrote a column about how this question sometimes emotionally triggers me as I ponder its answer. Sometimes it is easier to fib my answer and say that I am doing well instead of actually disclosing how hard IPF life is. I feel as though “well” is what people want to hear anyway.
  • For people to frequently check in: Everyone is busy, but it is so nice to receive a sporadic text or phone call to check on how I am doing. Luckily, I haven’t dealt with an anxiety disorder, but nervousness is creeping into my life more frequently. My anxiety tells me that the people I love and care most about might leave as I get sicker. When loved ones check in on me, that fear is temporarily alleviated.
  • Don’t compare diseases: I know people want to relate to one another based on difficult experiences, and so people often compare illnesses to try and understand. Please don’t do that. My lung disease is not the same as your fibromyalgia and vice versa. We can support one another while accepting that our diseases are entirely different.
  • Encouragement: Some days with IPF are really difficult, and so I am often emotional. Your verbal encouragement, distractions, or listening ear for my venting is extremely appreciated. Encouragement costs nothing, and it is something we can all do for one another.
  • Compassion and understanding: When I cancel social plans, which is really hard to do but necessary when my body and lungs don’t cooperate, please be understanding. I just cannot do it all.
  • Think of ways to help me: Put yourself in my shoes and ask what you’d want from a friend or family member if you had a life-threatening illness. What would make your day a little easier? What might make you smile?

What are some of the things you need from others since being diagnosed with pulmonary fibrosis? Share your experience in our PF forums here!

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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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6 comments

    • Charlene Marshall says:

      Hi Jean,

      Thank you for reading my columns but I am so sorry to hear of your experience with people questioning your illness. That is so hard to cope with, especially when we already feel so vulnerable and unwell while living with IPF. Hang in there, and know that others who question your illness must have other things going on as no one would fake this cruel illness. Feel free to write anytime, we’re here to support you!

      Warm regards,
      Charlene.

  1. Mary Ann Canter says:

    Hi, I have HPS which is a rare disease that is characterized by albinism, a mild bleeding problem and pf sometimes starting by age 30. One of the women in the picture looks like she has very fair skin, which is typical of HPS. The HPS Network is always trying to find persons with this genetic disorder. It is currently being studied by NIH and we are having good luck getting lung transplants. Is it possible to speak to her about her situation? HPS is so rare there are only 300 people in our database. You could contact me or have her look at the HPSNetwork.org.

    • Charlene Marshall says:

      Hi Mary Ann,

      Thanks for getting in touch with us and for reading my column. I’m not sure which person or picture you’re referring to (the one with the person with fair skin)? The photos we use on our columns are stock images, meaning they are available for free use on the internet and aren’t anyone we know. I will keep the HPS Network in mind though in future, especially if it comes up in discussion among our PF community. Thanks for passing on this resource.

      Warm regards,
      Charlene.

  2. Suzanne says:

    One additional thing: encourage all your friends and family to get their annual flu shots! If they don’t we IPFers need to gently let them know that they really can’t hang around with us with that. It’s just too dangerous!

    • Charlene Marshall says:

      Hi Suzanne,

      Thanks so much for getting in touch with this regarding this very important topic – I couldn’t agree more with you! Unfortunately many people have this common misconception that getting the flu shot will give them the flu, which is not true at all. It’s frustrating when they give this push back, especially because those of us with IPF could pay the ultimate price if we get sick. Thanks again for this reminder to all!

      Regards,
      Charlene.

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