I recently came across a social media post that hit home. It began: “Never judge someone with a chronic illness if they …” and went on to list things like skipping meds,…
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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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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