When engaging in online forums, aim to be curious, not judgmental

I recently read a social media post from a patient who uses supplemental oxygen. They said they were unable to alert a family member in a neighboring room when the power went out, causing their oxygen to stop. Someone commented that if the patient had been on only 3 liters per minute of oxygen, as they noted in the post, why didn’t they just get up and walk to the other room?

When I was diagnosed with idiopathic pulmonary fibrosis (IPF), I started on a journey unique to me. I had been on different social media platforms for some time, and I knew they could be like the Wild West. Shortly after my diagnosis, I engaged on a site where much of the content seemed to be written in anger or made unrealistic claims, often resulting in members sparring over who was right.

Fortunately, I quickly discovered the educational resources curated by the Pulmonary Fibrosis Foundation. Also, I soon located Pulmonary Fibrosis News through the late Kim Fredrickson‘s writing.

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Navigating online interactions

To be fair, I am writing this column based on one comment I read on a single post. I know what each person wrote, and that is the extent of the context I have.

I will tell you my initial impression was that the person responding was out of line. There was nothing to indicate they knew anything else about the patient, besides what was shared in the post.

Upon reflecting, I had to admit I didn’t know anything else about the responder.

One of the issues on social media platforms is that emotions often aren’t captured through the written word. I know I make assumptions, and in this case, I assumed the original poster was sharing facts regarding their experience. At the same time, I concluded the responder lacked empathy and was being overly critical.

But what if, instead of making assumptions, we were to “be curious, not judgmental”? That idea was recently popularized by an episode of the Apple TV+ series “Ted Lasso,” though the show misattributed the quote to Walt Whitman. The earliest example of that exact phrasing is believed to come from a syndicated advice column written by Marguerite and Marshall Shearer, distributed by Knight-Ridder in the mid-1980s.

It’s good advice for navigating encounters on social media. Despite my assumption, the responder may have been simply asking a question to gather more information. After all, it’s my experience that seeking further information helps us develop a better understanding.

On the other hand, what if the responder had instead asked if it was difficult for the patient to walk? The initial response, in my view, came across as judgmental, while this question seems more curious.

This approach doesn’t just apply to social media. Almost any interaction with our care team would likely be more productive if we were curious and asked questions. But it’s important to note that the most critical part of any message is often in the delivery. Transitioning from judgmental to curious may take some practice, but it can be done.

Rare diseases are difficult enough to manage without judgment. Being curious is a kinder approach, and being kind is another way to make every breath count.

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.