The Power of PF Storytelling, and a Plea for Change

Stories have been a catalyst for conversation for centuries. Generations of families are often weaved together by the narrative of a loved one’s past, and by the stories that have shaped our evolution. There is so much to learn through the stories of those who came before us.

As a child, I loved listening to stories, especially those told by a family member while sitting around a campfire at our cottage. I enjoyed reading or listening to fictional stories, including novels and audiobooks, but I found that there’s something special about listening to nonfictional and personal stories as related by senior members of the family.

Perhaps the experience of storytelling around a campfire shaped my passion for narrative therapy, an area of psychotherapy based on stories. Narrative therapy focuses on understanding a person’s life narrative rather than a problem they might be struggling with. Narrative therapists apply a person’s strengths and skills identified in their life narrative, or story, to solving the problem they are seeking therapy for.

As a trained therapist, I enjoy working with this method, not only because it relies on a strengths-based approach to supporting a client, but also because it creates an opportunity to hear the life stories of others, which are powerful and often inspirational tools.

I am privileged to be able to listen to other people’s stories at my job. Yet listening to these types of stories can be heavy. It’s important for professionals who do so to find an outlet to protect their mental health.

Nevertheless, more often than not, the stories can be inspirational and form a foundation for change. That is why I wanted to share some of the stories that have found their way into my email inbox lately, in hopes of making a plea for change.

As a columnist for Pulmonary Fibrosis News, I’ve interacted with many patients living with this cruel lung disease. I knew in 2016 when I decided to write about my life with idiopathic pulmonary fibrosis (IPF) as a young adult that I was indirectly inviting others to share their stories with me. What I didn’t expect was how powerful their stories were and how inspired I would be to make a plea for change. That is what I am doing with this column.

Over the past six weeks, I have heard from eight young adults, all under 40, who were recently diagnosed with IPF. Either they reached out to me or their loved one did. While I wish they didn’t have IPF, there is a lot of power in their stories that they may not realize.

A few years ago, I remember being told that some prominent pulmonologists didn’t believe young people could get IPF. They knew patients could get pulmonary fibrosis as a result of another disease, but not from an unknown cause (idiopathic). Apparently, these pulmonologists thought the latter experience was rare. Perhaps my experience is rare, but I know now that other young adults are being diagnosed with IPF, because I’ve heard their stories.

Here is the plea for change I’m making to researchers, physicians, and advocates alike: Please embrace young adults being diagnosed with IPF, as the numbers seem to be on the rise, and our needs are unique. We need to change the mindset that being diagnosed with IPF as a young adult is rare or doesn’t happen, and our stories can become the foundation for that change.

For those newly diagnosed, I am so sorry. I remember how hard it is to hear the words, “You have IPF.” I am here for you. Please reach out, and when you feel strong enough, begin sharing your story.

Make it known that young people are diagnosed with IPF and advocate for change. There is power in your story and like all stories, your experience can spark a conversation that might lead to change for those of us living with this cruel lung disease.

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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.