How to Help Others Deal With Your Disease

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For patients diagnosed with pulmonary fibrosis (PF), coming face to face with the realities of the disease happens quickly. This is often due to the physical impact of PF and that over time, the patient’s abilities to do things they once could do will shift dramatically as their disease progresses.

There are a plethora of changes that a patient will go through after their diagnosis, including enduring the horrible side effects from some of the medications used to slow the progression of PF, or dealing with an intense schedule of medical appointments. Another significant change a patient will inevitably experience is in their ability to work full-time, along with their ability to complete daily tasks in the home or run errands. All of the things that physically happen to a patient as result of their diagnosis prevents them from avoiding the realities of what it is like to live with a life-threatening illness. However, friends and family members are in a position where they can avoid those harsh realities.

Talking about your disease
When discussing your disease with others, it’s common for friends and family members to grasp onto optimism and to truly believe you will outlive your prognosis. It’s a tactic that loved ones often use to protect themselves from the fact that this is a life-threatening illness and that the patient is in danger.

MORE: Three travel considerations if you have a lung disease

Even when a patient is realistic about the prognosis associated with the disease, it’s still important to hold onto hope, positivity and optimism. However there is a delicate balance between being realistic and facing the inevitable (without a transplant) and honouring the hope and optimism that others have, which is that you will miraculously be well for years to come.

That all being said, there are patients out there grappling with how to make their loved ones aware of how serious their disease is. Optimism and positivity are important, but so is a patient’s desire to be realistic and subsequently, the need to discuss some of the harder topics that come with a life-threatening illness.

Developing a support network
It’s important to remember that everyone processes hard information differently, so it helps to have several friends and family members available to support you, based on different needs. For example, some friends or family members may need to know all the details about what is to come in the face of this disease, while others may need to be optimistic and hopeful for you (even if that hope seems unrealistic).

Being aware of who copes how, and sharing information with them accordingly can be beneficial for both of you. When you need to be realistic and explore the prognosis or what the end-stage of this disease will look like, engage those friends who also need to know all the details and can have those hard conversations with you. When you are seeking out hope and positivity — perhaps when things feel overwhelmingly difficult or an appointment just revealed bad news — embrace those who are optimistic in their way of coping.

MORE: When to consider professional help when dealing with PF

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 another 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.

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!

2 comments

  1. Joyce Douglas says:

    Thank you for giving me a message I can copy and paste for my family and friends. It is true that it is hard to deal with the realities of our disease without having to convince others that we aren’t doing well – no matter if we do look well. We know different. J.D.

  2. Don Dove says:

    I have been following this segment for
    Sometime now and the information
    You have
    Shared , has helped me along my path with PF. I was told at first I had IPF, only to find out later I didn’t but did have PF, hypersensitivity pnumiatitis, and Polymyositis on top of that. I really don’t know my prognosis for all 3 but it can’t be good. My message is keep up the good work and remember what Hank Williams once said. “ YOU WILL NEVER GET OUT OF THIS WORLD ALIVE”

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