How my experience as an IPF patient affects other medical situations

Having medical knowledge can be helpful and other times problematic

Charlene Marshall avatar

by Charlene Marshall |

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As a young adult, I feel competent in many aspects of my life.

In my career, I’m a new clinical manager in the field of psychotherapy, and I feel grateful that things are going well.

Personally, I can carry out the tasks of living independently fairly well. I care for my dog, cook and eat well, and budget as needed. Recently, I handled an internet problem that needed repairing.

Yet one area of my life that I don’t always feel confident about is how I deal with my medical condition. I was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016. IPF is a progressive and life-threatening lung disease that eventually requires a lung transplant. It is a lot for both patients and caregivers to manage.

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When I have doctor appointments as part of my IPF care, I tend to ask a lot of questions. Having answers helps me to understand my disease and why things are done a certain way. Asking questions prepares me for possible side effects of certain medications, and allows me to read and interpret my vitals, including my oxygen levels, and to recognize signs of distress, among other things. Overall, it helps me build up my competence in IPF management.

While my questions are typically specific to IPF, the answers broaden my medical knowledge and can be applied to other scenarios. For example, I can now identify what a normal heart rhythm on an electrocardiogram should look like, recognize when blood pressure is too low, and know where to find the oxygen levels of a patient on a vital signs monitor in the emergency room.

These skills came in handy recently when I experienced a role reversal in the hospital. Typically, I am the patient and others care for me, but unfortunately, someone I love was in the intensive care unit and I was their primary caregiver. While their hospitalization was due to an acute event and not a chronic illness like IPF, I was able to apply the knowledge I’ve learned from my own illness in order to advocate for my loved one.

However, because of this, I suspect that the care team thought I was more competent as a caregiver than I was. I have no experience as a caregiver in the ICU, only as a patient. I felt a little lost. I was advocating for social workers to speak with us, setting up visual schedules, and asking questions about discharge and outpatient care.

Later, while discussing this situation with a colleague, she was surprised I had to do the work as a caregiver, when that type of information is usually provided to patients and their family members. My colleague knows I am competent at my job, and suggested that perhaps I had to be inquisitive in the ICU because the staff presumed I was capable and confident navigating a hospital setting.

The information I needed to care for my loved one was made readily available from the hospital staff once I had asked for it. As soon as I did, they were responsive, thorough, and compassionate. Overall, I couldn’t have asked for a better care team for this person. But I wonder how my experience as a caregiver might differ if I hadn’t been armed with the medical knowledge I did have.

Living with a chronic illness is hard work, and it takes a lot of effort to navigate life with failing lungs. Few specialists fully understand the complexities of IPF. So, as a patient, I don’t feel competent in managing it, even if others might perceive me to be. This perception can lead to extra work on my end, including playing the role of advocate and asking lots of questions, whether I’m the patient or not.

As an IPF patient, have you ever had an experience in which someone presumed you were competent in a situation due to your medical knowledge? Please share in the comments below. 

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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.


Sheila Weiss avatar

Sheila Weiss

You are a true inspiration for many of us. I was diagnosed in 2017 and I'm now on 6L 24/7. Can't do the things I used to love to do but I have great memories.

Margaret Hannigan avatar

Margaret Hannigan

I am trying to find somewhere to send donations for IPF. My husband just passed after 6 years and I want to have donations made to IPF research can anyone give me some info

Taleena Koch avatar

Taleena Koch

It is truly amazing that is lay-people can learn enough about medicine along a journey like this and be able to ask medically informed decisions and talk to clinicians on their level. We aren’t doctors by any means but we are medically informed patients and caregivers. We don’t need a formal medical degree to gain some helpful knowledge.


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