The Importance of Person-first Language for Patients with Pulmonary Fibrosis

The Importance of Person-first Language for Patients with Pulmonary Fibrosis

younger than 30

Person-first language is a concept that has been around for many years. However, the general population does not prioritize it in everyday language. I don’t believe that people deliberately use disability- or disease-first language, such as “autistic child” or “PF patient.” Rather, I believe person-first language is not regularly practiced simply because there is not sufficient awareness of its importance.

What is it that I mean by person-first language? Phrasings like “a person with PF” instead of “a PF patient.” Person-first language is important as an inclusive and nonjudgmental way of speaking about someone. Person-first language also acknowledges that an individual’s disability or disease is only a secondary identity. It often feels as though a person’s disease is their primary identity, especially in the hospital setting where patients are often quantified or triaged by what is “wrong” with them. It can feel as though our disease takes the primary attention of medical staff.

Due to the volume of patients admitted to the hospital or seen in an emergency department, the medical professionals must focus on treating the disease, which puts it at the forefront of all conversations. While understandable, it is always appreciated when medical professionals also invest interest in patients as people. I like to be known as a young adult living with IPF versus a “PF patient.” This allows me to feel as though my illness is just a part of me, not my entire identity. I also like the term “living with IPF,” because that is what I am trying my best to do on a daily basis.

When a patient is diagnosed with a life-threatening illness, there is no guidebook on how to cope, especially with the social and emotional implications. The way people are referred to in any setting, whether it be medical or otherwise, can affect emotional coping. For example, following my IPF diagnosis in early 2016, it was hard for me to share the revelation with friends and family. The last thing I wanted was to be the only young adult in my social circle living with a chronic illness, especially one that usually affects the older population.

In the period immediately following a diagnosis of a life-threatening illness, a patient endures many tests, appointments, blood work, and scans. This is for the medical teams to establish a baseline of where disease progression is at and a point of reference as the disease progresses. This process caused me to question my identity and what my future would be like as a person living with IPF.

As I shared my diagnosis with friends and family, all conversations became about my disease and how I felt. Although unintentional, it felt as though all my other identities faded. My identities as a daughter, sister, aunt, friend, colleague, professional, and advocate suddenly felt secondary to my disease. What I was doing on a regular basis in those identities never seemed to trump questions about my disease. While this is no longer the case, as those around me now know more about IPF, it was emotional and hard to deal with at first.

As a result of having my disease talked about so much initially, even I sometimes labeled myself as the “PF patient” for a while. I am out of that mindset now and sometimes hearing that label causes me to have an emotional reaction. Due to this, I am much more aware of person-first language and intentional in my uses of it when writing or speaking to or about someone living with a disability or illness. This is because I do not know who has had an experience similar to mine.

As a person with IPF, do you feel similarly? After reading this column, I challenge you to try and change your language to be person-first and encourage others to do the same.

***

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.

10 comments

  1. Jeff weaver says:

    Thank you for your perspective and awareness of the power of words, and their proper usage. I expect that your article will be a great benefit to many professionals and people living with challenges of all sorts. God bless you. CARRY ON!

    • Charlene Marshall says:

      Hi Jeff,
      Thank you so much for reading my column and contributing to the comments! I do hope that my column is helpful for professionals to recognize the importance of treating us patients first like people, and our disease second. You’re right, it is very applicable to people with all sorts of challenges and difficulties. Thanks for your kind words, and for getting in touch.

      Warmest regards,
      Charlene.

  2. Jim Dean says:

    Thank you for your article. Ironically I worked for years with people with disabilities and although I heard about person first it was never explained to me. Now I know which is good as I have a brother who was recently diagnosed with Idiopathic pulmonary fibrosis. I will now make it a practice to talk about the whole person first and then the IPF. I want to be a part of the solution as much as possible not the problem.
    Thanks. Very appreciated
    Jim

    • Charlene Marshall says:

      Hi Jim,

      Thank you so much for reading my column and getting in touch. The concept of person-first language is very applicable to people living with a disability, and usually this is the context of which I am familiar with it also. Interesting now, how I am on the receiving end of this as a patient living with IPF and how much I appreciate people using it. I would imagine your brother would appreciate it as well, as so often it seems that our disease can consume many of our other identifies which is hard to accept. Your commitment to practicing person-first language is so very much appreciated. Thank you for being part of the solution on our behalf. Take good care and thanks again for reading!
      Charlene.

  3. Katie Broach says:

    at age 80 (in 4 days), in my 5th year with IPF, by now I have so many other medical issues that any one of them may help describe me or designate who i am.
    with AFib added to thirty years of severe arthritis, i sometimes feel I AM my issues. Those are the days I have to remember the things I’m most grateful for and rise about it, in other words, get over myself. Everything I do is so hard, I can honestly say while celebrating the milestone 80, i don’t wish to see 90 unless some magic potion cures one of my complaints, better yet, two of them. My IPF is actually the least of my problems (knocking on wood here). I did learn today I must run errands early in the day since breathing becomes so difficult later in the hot, humid temperatures. Praying for a cure and that God will be with the young people trying to live a life with IPF.

    • Charlene Marshall says:

      Happy almost-80th birthday Katie! I hope you enjoy your special day!

      Thanks as always for reading, and for getting in touch via the comments. I agree, it sometimes can be difficult to decipher our non-medical identities from our medical ones, especially since the latter take up so much of our time. When I lose sight of this, I try and make an intentional effort to spend some time re-highlighting my preferred identities whether it is through writing an article, or doing something that I enjoy. This helps me and I hope it might help you too! I do agree though, it certainly can be hard and even focusing on what you’re grateful for is easier said than done some days, isn’t it?

      I hope your IPF remains stable for you, and that your breathing isn’t too bothersome in this summers’ hot weather. Right there with you and praying for a cure from IPF for all of us patients.

      Take care,
      Charlene.

  4. Donna Pioli says:

    Thank you for writing this column about “ person first.”
    I used to work with adults with developmental disabilities, who at one time were called ”disabled,” “Down syndrome,”
    Even worse was “retarded”. You can see how much those choices can affect people and make them feel different.
    Your column brought all this back to me, and, yet, I had not thought about applying it to PF as often. Thanks for the
    Reminder! Great reminder!

    • Charlene Marshall says:

      Hi Donna,

      Thank you so much for reading my column and for getting in touch via the comments! I couldn’t imagine living in a time where those terms were acceptable, but I do remember them vaguely as well. I am so glad language has changed and the focus is person-first; it makes such a difference to our ability to cope, especially now as I sometimes feel like my disease trumps all my other identities. I am glad that a disability now comes second to a person’s preferred identify. I absolutely agree how choices can affect people and make them feel better when we use person-first language. Thanks for your willingness to use it as it applies to patients with PF as well, much appreciated 🙂

      Warm regards,
      Charlene.

  5. John Russell says:

    I have been diagnosed with IPF since 2013 and what bothers me the most is not knowing what I unknowingly did to cause it. Why not provide a place where IPF patients can leave a brief description as to what they think could have caused thier IPF. For example – J. Russell – [email protected]
    a. I kept horses in an old dusty barn for 10 years. I used saw dust bedding and removed the wet saw dust and manure as needed. Sometimes I would find Coon and Opossum feces in the hay storage area.

    b. I spent two days removing fiberglass insulation batts from between floor joists in a damp and dusty crawl space.

    • Charlene Marshall says:

      Hi John,

      Thank you so much for reading my columns and getting in touch via the comments. I am sorry to hear of your IPF diagnosis in 2013, and hope it has been relatively stable for you in these past few years. It certainly bothers me as well (and my family) that we can’t seem to identify any probable cause of my IPF, and it is something I struggled with a lot in the first year of my diagnosis. I’ve since kind of “given up” on trying to find out the cause, as it was taking so much of my mental energy but I do wonder from time to time.

      Having a platform for others to share what they think the cause of their IPF is would be interesting, wouldn’t it? Perhaps it might shed some light on some causes too through a common thread? Maybe we can explore this using our new survey tool option in the future. I’ll definitely keep it in mind!

      Thanks for connecting and wishing you nothing but the best John.

      Warm regards,
      Charlene.

Leave a Comment

Your email address will not be published. Required fields are marked *