Going wide with ‘HemoWife,’ and more, on a social media channel
While hemophilia is a big part of my family's story, it's not the only chapter
Lately, I’ve been toying with the idea of starting a social media channel that captures slices of my everyday life. On the surface, that might not sound unusual. Plenty of people create online spaces to document what they love, what frustrates them, or what they’ve learned.
But for me, the challenge lies in the balance. I write this column as a “HemoWife,” and hemophilia is a big part of my story. Still, I don’t want to be boxed into telling only hemophilia stories. I’m a wife, a mom, and a neurodivergent woman with her own quirks, interests, and routines. Hemophilia colors our experiences, but it isn’t the entire picture.
The other day, I even asked my husband, Jared, why he doesn’t “advocate” online in the sense of sharing his condition more publicly. He just shrugged and said he doesn’t see himself as all that relevant in the community. It’s typical of him to underplay what he lives with — but his answer also reminded me why I feel pulled to share in my own way.
Between niche and relatable
Whenever I sit down to plan what I might post, I ask myself: How do I stay true to our reality without narrowing myself into a single angle? If I lean too hard on hemophilia, I risk being defined by it. But if I ignore it, I lose a piece of authenticity.
The truth is, much of our life looks like anyone else’s. We run errands, work out, go on long drives in the summer, enjoy buying gadgets and knickknacks, and laugh at inside jokes that make no sense to outsiders. Hemophilia is simply woven into the fabric of those moments. It makes our story unusual, but it doesn’t make us unrelatable.
That’s what I hope my channel can show: that behind the label, “HemoWife” is simply a woman living her life — sometimes messy, sometimes funny, always raw and real.
What you can expect to see
On my TikTok channel, which I’ve called @everydayallyx, I plan to share the little things that shape my days. Some posts might mention Jared’s hemophilia or his epilepsy. Others might focus on my ADHD brain and how it tangles with the routines of family life. Many will simply highlight the cozy, ordinary moments that make me pause: a good cup of coffee, a small parenting win, or a quiet night at home. You might also catch glimpses of my eclectic “interior design” style — messy by nature, but something I’ve learned to accept and even embrace.
My hope is that these glimpses help normalize the mix of extraordinary and ordinary that defines families like ours. You don’t need to live with hemophilia to connect with what I share. Chances are, you’ll see pieces of your own life reflected back.
Extending the conversation
This column has always been a place for me to reflect on what it means to live alongside hemophilia. The channel is an extension of that, in a different format. Video lets me show the moments in motion, not just describe them in words.
So if you’d like to see more of the small, everyday details that don’t always make it into print — the humor, the chaos, the routines, and the real — I’d love for you to follow me on TikTok. And if something I share resonates with you, don’t hesitate to like, comment, or share your own story back. After all, the best conversations are the ones we build together.
Who knows? Maybe if enough people stop by, even Jared might have to admit he’s got more to share with the world than he thinks.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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