Hemophilia has taught me to pause before judging other people

In a society where reality television is king, passing judgment is easier than ever. Contestants in competitions such as “Dancing with the Stars” and “American Idol” are eager to hear the judges’ remarks in hopes of advancing to the next round. On shows like “Judge Judy,” litigants demand arbitration to right a perceived wrong.

Unfortunately, judgment is rampant in our culture today. While it’s entertaining in competitive settings, it can cause real harm outside of them.

In my younger years, I would judge people who used accessible parking spots if they didn’t look sick. In my ignorance, I never considered that they might live with an invisible illness. I understand the stigma surrounding these illnesses now that my sons and I have invisible afflictions.

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This understanding has shaped my interactions on social media. Sometimes I see posts that upset me, but instead of reacting impulsively, I pause to consider the other person’s perspective before replying.

For example, I’ve seen people debate whether the term “disabled” accurately describes those living with hemophilia. Some have suggested that, because of advances in treatment over the past few decades, younger patients shouldn’t complain. These complaints are considered “disrespectful” toward older generations.

As the mother of two young adults with hemophilia A — Julian, 29, and Caeleb, 20 — I am bothered by this perspective.

In 2006, my youngest son was diagnosed with a high-titer inhibitor, one of the most significant complications a person with hemophilia can endure. He has also faced joint damage, frequent hospitalizations, uncontrollable pain, numerous ports, and an allergy to factor VIII, which made his case especially difficult.

While Caeleb has benefited from newer treatments, he still battles chronic pain every day. He is registered as a disabled student and struggles to navigate his college campus, but I’m proud of his determination and resilience.

Although new treatments have improved the quality of life for many patients, some children and young adults with hemophilia still face severe complications and challenges. In making generalizations and passing judgment, people often overlook the reality of what others are facing — especially since pain, illness, grief, and struggle aren’t always visible.

These types of comments can be upsetting, but before I clap back, I try to remember that behind the words are people with full lives who may be experiencing hardships I know nothing about. Who am I to judge them? So, instead of responding harshly, I focus on simply sharing Caeleb’s story to raise awareness and improve understanding.

We are all walking the Earth with our own unique stories and struggles, so let’s try to love more and judge less.

Note: Hemophilia News Today 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 another 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.