Both of my children have a rare genetic condition known as hemophilia, which impairs the blood’s ability to clot. This disorder can lead to severe internal bleeding, particularly in the joints.
My youngest child, Tyler, faced significant challenges due to his hemophilia, resulting in extensive damage to his knee and ankle. Unlike most boys with this condition, Tyler experienced complications that led to a loss of mobility for an astonishing 18 months. He relies on a wheelchair for longer distances, although he can manage to limp or hop a few steps. Over time, he regained some mobility and could walk with a slight limp, but extended walks remain a challenge.
To manage Tyler’s health issues, we frequently traveled between Phoenix and San Francisco, and bringing his wheelchair was essential. Each trip heightened my anxiety. We tried to navigate the airport without drawing attention, yet we were met with constant stares from fellow travelers. It wasn’t just children who stared—I expected that. Adults would turn their heads and follow us with their eyes. It was disconcerting. I often felt the urge to confront them, asking, “Is there a problem?” with a sarcastic undertone.
During one airport visit, Tyler looked up at me and asked, “Mom, why are people staring at me?” My heart shattered at that moment. My son, who demonstrated remarkable resilience, was aware of the rudeness around him. I halted his wheelchair, knelt down, and replied, “Sweetheart, it’s because they see how extraordinary you are.”
From a distance, one might wonder why he required a wheelchair. What isn’t visible is the extensive damage to his knee and ankle joints, which have suffered due to repeated bleeds, leading to restricted movement and pain. If only people could see him try to walk, perhaps they would understand, but that was unlikely.
On another occasion at the San Francisco airport, I informed a TSA agent that Tyler could walk—albeit with a limp—through security. Immediately, another TSA agent, overhearing, raised his voice, exclaiming, “The lengths people will go to for priority boarding! Unbelievable!” He stormed away, muttering under his breath. My heart sank. I could feel the judgment of those around me; I could imagine them thinking, “Thanks for holding up the line.” Thankfully, Tyler didn’t hear him and was already on the other side with his father.
Reflecting on that airport incident still brings tears to my eyes. I wish I had spoken out for my son and for countless others who appear “normal” yet face hidden battles. For a brief moment, I felt shame. Did everyone share the insensitive views of that TSA agent? Inside, I screamed, “He has hemophilia! Do you know the unbearable pain he endures from constant joint bleeds? How dare you think I’m trying to cut in line!” The protective mother within me was furious, but I had to control that anger. After all, it took months to secure our appointments in San Francisco, and I didn’t want to complicate matters with a confrontation at the TSA checkpoint.
It has been a while since that incident, and I often ponder what I would say to that TSA agent. Here’s my message: You may not always see the struggle someone is facing within their body. Many illnesses are invisible. The next time you consider judging someone in a wheelchair or needing assistance, take a moment to reflect on the battle they may be fighting. Appreciate your health and think carefully before you speak.
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In summary, the struggles faced by those with invisible illnesses, including children like Tyler, deserve understanding and compassion. We must strive to create a more empathetic world for those whose battles are hidden from view.