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.
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.
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 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.
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.
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.