Alliah Czarielle,  —

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…

While the holiday season brings excitement, it also creates unique challenges for families like ours who are managing chronic conditions. My husband, Jared, has severe hemophilia B and epilepsy, and I have attention-deficit/hyperactivity disorder (ADHD). While common advice suggests taking it slow, setting strict boundaries, and skipping some…

After a decade of living alongside my husband, Jared, and his severe hemophilia B, I’ve learned that not all bleeding is as straightforward as it may seem. Bleeds vary widely, not just in size but in severity and impact. What might look minor can be excruciating, while larger bleeds,…

When people hear about epilepsy, they often picture sudden, dramatic falls, frantic efforts to keep the person safe, and looming threats of injury. For my husband, Jared, these are indeed valid concerns. “What if he falls?” “What if he bumps his head?” These questions cross people’s minds — and…

I’ve lately come to realize that pride and dignity are core values in my life, profoundly influencing my sense of self and my interactions with others. Although pride is sometimes seen as a negative trait, there’s a crucial distinction between healthy and unhealthy pride. The former allows us to feel…

Living with hemophilia involves more than managing physical symptoms. It comes with mental and emotional challenges, too. My husband, Jared, who has severe hemophilia B and epilepsy, has spent much of his life feeling the need to prove himself. From childhood to adulthood, this drive for validation shaped…

Fat-shaming is a widespread issue that can also affect people with hemophilia, especially young children. At its core, fat-shaming involves making negative comments or judgments about a person’s weight, which can lead to feelings of inadequacy or embarrassment. While these remarks may be intended to encourage weight loss or…

One of the most pervasive and amusing misconceptions about hemophilia is that a person with the condition could bleed to death from a tiny paper cut. People often think that those with hemophilia must avoid everything that is sharp, which isn’t entirely accurate. Hemophilia doesn’t cause people to…

Ever since turning 30, I’ve been on a fast track toward self-improvement, determined to get the most out of life. I want to experience things meaningfully with my husband and daughter, doing things that bring me joy and fulfillment. But lately I’ve been feeling a bit disconnected from myself. That’s…