HemoWife - a Column by Alliah Czarielle

When people talk about hemophilia, some deliberately avoid calling it a disability. Instead, they’ll say “a medical condition” or “a health challenge,” as if disability were a negative label. Some who embrace the positive thinking movement even argue that people with hemophilia shouldn’t see it as a disability, pushing…

An unfortunate incident recently made waves on social media here in the Philippines, where I live, when a restaurant chain posted a dismissive, sarcastic message about fake disability IDs. The poster questioned whether 30% of its customers were truly disabled and mocked those with invisible disabilities. It also reduced…

Commuting in a crowded metropolis can be a daunting experience. Many cities around the world struggle with inadequate public transportation infrastructure, poor urban planning, and heavily congested roads. In places like metropolitan Manila, where we live in the Philippines, navigating public transportation can feel like a game of survival.

Some people get birthday blues. Jared got a birthday bruise. So we found ourselves heading to a café to get some birthday brews. — A rhyme by yours truly My husband, Jared, celebrated his 32nd birthday on Jan. 13. A couple of days before that, he had a run-in with…

My husband, Jared, often spent his childhood navigating two very different worlds. In one, he was a regular kid with big dreams and boundless imagination. In the other, he was a young boy living with severe hemophilia B, which meant being confined to hospital beds for weeks while receiving…

When my husband, Jared, was younger, he was “the sick child.” With severe hemophilia B and a seizure disorder, he stood out like a sore thumb — or a rare gem. In any case, he was distinct as the child who required special accommodations at school or who missed…

My husband, Jared, lives with severe hemophilia B and a seizure disorder. Despite these challenges, he’s active in ways that many people wouldn’t expect. He swims, lifts weights, and plays badminton. He can also keep up with our 5-year-old daughter, who is a huge ball of energy. We recently…

At age 28, I received a diagnosis that changed the way I saw myself. Learning that I had attention-deficit/hyperactivity disorder (ADHD) felt like a missing puzzle piece finally clicking into place. Suddenly, everything that had once confused me about my life made sense: my struggles to stay engaged in tasks…

When someone we love is diagnosed with a chronic illness, our instincts often compel us to search for solutions: stricter routines, healthier diets, more discipline, or the willpower to push through. While self-help culture tends to praise these strategies, our family’s experience with chronic illness has shown that they can…

Living with someone who has a chronic illness has taught me much about perspective — both my own and that of others. While being married to someone who has hemophilia and epilepsy, I’ve seen firsthand how people often show that they care based on what they believe they’d want…