When it comes to illness, not all struggles are visible. Both of my children grapple with hemophilia, a rare genetic disorder that inhibits blood clotting and can lead to severe internal bleeding, particularly in the joints. My youngest son, Ethan, faced significant complications from this condition, resulting in extensive damage to his knee and ankle.
Unlike the typical experiences of most kids with hemophilia, Ethan endured complications that led to an 18-month loss of mobility. He relies on a wheelchair for mobility, but can manage short distances with a limp or hop. While he eventually regained the ability to walk—albeit with a noticeable limp—long walks remain a challenge.
Our journey often took us from Albuquerque, New Mexico, to Denver for specialized treatments. The necessity of a wheelchair heightened my anxiety during our travels, particularly in crowded airports. We endeavored to navigate through these spaces without drawing unwanted attention, yet the stares were inescapable. Adults and children alike would often glance at us, some with expressions that suggested judgment. I often felt the urge to confront them, sarcastically asking, “Is there a problem?”
On one occasion at the Denver airport, Ethan asked me, “Mom, why are people staring at me?” My heart shattered at that moment. This strong boy, who had shown incredible resilience, was aware of the rudeness directed at him. I stopped his wheelchair, knelt down to his level, and reassured him, “It’s because they see how amazing you are.”
To the casual observer, Ethan’s wheelchair might seem unnecessary. What they cannot see is the damage to his joints—his knee and ankle appear aged beyond his years due to the deterioration of the synovium, the protective tissue inside the joints, caused by repeated bleeding episodes. If only people could witness his struggle to walk, perhaps they would better understand his needs.
On another occasion at the Albuquerque Sunport, I informed a TSA agent that Ethan could walk, but a nearby agent scoffed, exclaiming loudly about people trying to game the system to board early. My heart raced as I felt the judgment of those around me. I worried that they believed I was trying to cut in line. Thankfully, Ethan, who hadn’t heard the comment, was already through the screening with my husband.
Reflecting on that incident, I often wish I could speak to that TSA agent. I would explain that not all battles manifest visibly; some illnesses are hidden beneath the surface. The next time you see someone in a wheelchair, on crutches, or with a therapy dog, take a moment to consider the challenges they may be facing. Appreciate your own health and think twice before passing judgment.
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In summary, my son’s invisible illness highlights the importance of empathy and understanding. While his struggles may not always be visible, they are very real. We must challenge the stigma surrounding hidden disabilities and advocate for those who may not be able to voice their struggles.
Keyphrase: invisible illness in children
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