The Invisible Impact of Trauma on Pulmonary Fibrosis Patients

With the exception of using supplemental oxygen, pulmonary fibrosis (PF) is an invisible disease for the most part. Like other chronic illnesses, it can be extremely difficult for patients to deal with; others can’t understand many of the physical symptoms and side effects of the disease. No matter how many times someone with PF, or any other type of interstitial lung disease (ILD), tries to explain shortness of breath to a person with healthy lungs, they just can’t understand.

They also can’t understand other physical symptoms, like the constant soreness and pain in the muscles surrounding the lungs from a frequent dry cough; regularly having an upset stomach or headache from the medications; or the frustration that comes with the constant fatigue from being chronically under-oxygenated.

There is another really significant and invisible side effect of PF that some patients experience, and that is the impact of trauma.

The Exacerbation
There are many personal stories online where patients have shared their experiences with acute exacerbations leading to sudden or prolonged hospital admissions. For those who may not be aware of what an exacerbation is, it means that there’s a sudden worsening of the disease, leading to symptoms that can be life-threatening.

For airway or lung diseases, an exacerbation can be caused by environmental triggers (think air pollutants, dust and mold) or even a significant change in the air quality and temperatures, such as extreme hot or cold. It can also happen in response to viruses or bacteria that a patient might encounter.

MORE: When to consider getting professional help while dealing with PF

The Intervention
Regardless of how it happens, acute exacerbations can be scary and can lead to very intense interventions — and the impact of that trauma on the patient is ofter overlooked. It’s terrifying to be subjected to interventions that are meant to save your life, including being intubated to immediately open up your airway, quickly having an intravenous line started to administer medications and hydration, or forcibly being given a bronchodilator medication, such as a puffer or rescue inhaler.

Once the life-threatening symptoms are resolved, things quickly become calmer for patients physically, however there’s often still a surge of emotion, which is a symptom that others can’t see.

The Effects
The impact of trauma on patients with chronic illnesses needs to be talked about, illuminated for others and shared with friends and family members. For health care professionals, there are many studies and literature publications available on how chronic illness and repeated hospitalizations can impact patients and cause trauma, including the diagnosis of post-traumatic stress disorder (PTSD). In theory, health care professionals are aware of the impact of trauma on patients, however, this is something that is often overlooked or simply not thought about by caregivers, friends or family members.

MORE: Three travel considerations if you have a lung disease

The Signs
It is important for caregivers, friends and family members to be aware of the signs that might indicate a patient is struggling with trauma, especially if a significant event has just taken place, such as an acute exacerbation, prolonged hospitalization or surgery. Information about these signs and symptoms can be found online through various credible websites, or by talking to the patient’s physician.

Being knowledgeable and talking openly reduces any stigma that might also be associated with the impact of trauma on patients. For example, depression and anxiety are often a symptom of trauma that stems from medical interventions, however, patients are often unsure why they might feel this way and try to subdue the feelings, which just increases a patient’s struggle and heightens how unwell someone might feel mentally and emotionally.

The impact of trauma on patients is real, and it is one of those invisible side effects that others cannot see. For caregivers, it may not mean that your friend or family member with IPF has a diagnosis of PTSD, however, it might be important to explore the feelings your loved one is having after a significant event with their health, especially if they mirror some signs of trauma. For more information, ask a professional how to support someone through trauma related to a significant health event or life-threatening disease.

MORE: How to help others deal with your disease

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!

4 comments

  1. Eileen Lewis says:

    Charlene, What a great article. Exacerbation is something we all live in fear of. Trying to avoid the triggers (i.e. having your house tested for mold,or just juggling your social activities to prevent cold or rhinitis infections) Even the fear of an exacerbation causes stress. So the trauma that follows one would be considerable.
    Eileen

  2. Marjorie says:

    Very good tips. It helped me to repeat back to the doctor my understanding of the new information he had just explained to me. That really helped. I did it because I wanted to make sure I had the information straight to share with my physician following an emergency hospitalization at a different hospital.

  3. Sheila Blanchard says:

    Hi Charlene, that is a great article, I often wondered what a exacerbation would feel like, now I Know what to expect.thanks again for the great information. Sheila

    • Charlene Marshall says:

      Hi Sheila,

      Thanks for reading, and I am so glad you found the article helpful and informative. That said, I do hope you never experience an exacerbation .. it was a very scary time for me, so I hope you never endure it. However, knowing what it might feel like now will allow you to get help faster, so I am glad you have that knowledge now. Kindest regards, and wishing you the best as always!
      Charlene.

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