Calling Out with Grace

I try to approach life by considering others' perspectives, not just mine. Sometimes, though, I fail at this. As a rare disease advocate, I'm not free of or above unintentional missteps that have led to being called out.

I've been fortunate that certain individuals gently called me out. It can be easy to feel offended when someone essentially says, "You're wrong, and you did this wrong," but with many more words, especially when it's something they're passionate about.

Differences between reacting and responding

I have had a longstanding bad habit of reacting rather than responding, particularly during confrontations. I've learned through the years as I improve responding versus reacting, when we react instead, we miss the point, plus a lot more.

Pause and reflect in online interactions

Nowadays, I think we can safely agree that there are a lot of aggressive reactions online. It's something I don't want to add to. Instead, I strive to respond thoughtfully. To do this, one must take a moment to pause and reflect.

Taking this time is essential to allow for reflection on one's reactive feelings and thoughts, the perspective of not only the commenter but also the community at large, and by doing so, one can respond with kindness and understanding. The ability to do so is a necessary universal skill to use in all our interpersonal relationships, not just reserved for online interactions or as a rare disease advocate.

Sharing my thoughts in the comments

Recently, I completely disagreed with a statement from a GI specialist on TikTok about what it feels like to undergo an esophageal manometry test. I respected her view of the pain level she asserted as she had undergone the test herself, but I wanted to bring to her attention that the test is not considered to be merely "uncomfortable" for everyone.

In this test, a tube with sensors is inserted through the nose down into the stomach. The tube insertion is generally completed without sedation but can be done with sedation. However, the actual test requires the patient to be conscious.

The doctor's response to my comment

I greatly admire and respect this doctor, so I wanted her to know that first before commenting on my point and sharing my experience.

I didn't anticipate a response at all, but when she did, she did it gracefully and even admitted to her own defensive feelings when she read my comment. This alone, I applauded. But then she did the most amazing thing a doctor can do: she paused, reflected, listened and changed her practice to become even more patient centered.

Now, she offers sedation to her patients who will undergo an esophageal manometry and thoroughly explains the reasons to or not choose sedation. Of course, I applauded this even more! This is something, I would say, that is a common hope within the rare disease and chronic illness communities—that providers listen and take us seriously so that not only can we receive the best care but also other patients.

You control how you respond

This isn't always how interactions play out, though. We have no control over others; we only have control of ourselves and how we choose to interact with someone else. We can choose to call someone out with grace and to respond to others with kind thoughtfulness when we are called out ourselves.