When job stability became a form of caregiving

When I first started writing for Hemophilia News Today in 2018, I never imagined it would become part of my career.

At the time, I was a young woman preparing for marriage and trying to make sense of life with hemophilia. I had stories to tell, lessons to learn, and questions to answer. Writing gave me a way to share what life with hemophilia really looked like and connect with families on similar journeys.

Back then, writing my column was only one piece of my working life. My husband and I ran a small online business together, which served as our bread and butter. For a long time, we thought entrepreneurship was the ultimate form of flexibility. It allowed us to shape our schedules around medical appointments, treatments, pregnancy, and eventually parenthood.

Then the pandemic arrived. Like many small businesses, ours didn’t survive. We suddenly had to reinvent how we earned a living. Fortunately, I had some marketable skills, so I did what many people do when plans change: I sold my time.

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For years, my husband and I pieced together our income through a patchwork of clients, projects, contracts, and deadlines. I spent many nights burning the midnight oil long after everyone else had gone to bed. Some days, I felt less like a professional and more like an air traffic controller trying to keep everything from colliding.

Freelancing offered flexibility, which was invaluable for a family navigating hemophilia and epilepsy. But it also came with chaos and uncertainty. Some clients expected immediate responses at all hours and treated every issue like an emergency. I often checked messages late at night because I worried that missing one could cost me an opportunity. Just as quickly, a long-term contract could disappear, taking a reliable source of income with it.

At the same time, our family’s responsibilities weren’t getting any smaller. Hemophilia didn’t pause because I was tired. Medical appointments still needed scheduling. Treatments still needed managing. Life moved forward whether I had slept enough or not.

The uncertainty became exhausting

For families affected by chronic illness, uncertainty can feel especially heavy. Living with hemophilia often means planning for expenses that many people never have to think about. Treatments, appointments, transportation, and countless smaller costs can add up quickly. Add rising prices and inflation to the mix, and financial stability becomes more than a convenience. It becomes a necessity.

For years, I thought flexibility was the thing my family needed most. Eventually, I realized we needed predictability even more.

My daughter was getting older. My responsibilities at home were growing. My role as a spouse and care partner continued to evolve. When a hand burn forced my husband to scale back his freelance work, I saw how quickly circumstances can change.

Soon, I had to ask myself whether I could sustain juggling multiple clients for the long term.

I wanted to be present for my family. I wanted enough energy to enjoy life with them, not just manage it. I wanted to watch my daughter grow up and continue building a life with my husband. Something had to change.

Building something that could last

One of the things I’m most grateful for is how my work with Bionews, the parent company of this website, evolved over the years. What began as a column grew into opportunities in social media, community management, forums, and digital content creation. Along the way, I found myself using skills from my broadcast communication degree that I once worried I’d never use professionally.

Today, I create videos, moderate conversations, engage with readers, and help connect people living with rare diseases and bleeding disorders.

Somewhere along the way, I felt less like I was piecing together a career and more like I was building one.

For a long time, I thought caregiving was mostly about managing appointments, treatments, and emergencies. But as I’ve gotten older, I’ve come to see that caregiving can take many forms. Sometimes it’s preparing for an infusion. Sometimes it’s offering support after a difficult day. Other times, it’s building a life with enough stability that your family can breathe a little easier.

I still don’t know exactly what the future holds. None of us does. But today, I feel grateful for the opportunities I’ve been given, the skills I’ve developed, and the community I’ve had the privilege to serve.

I’m glad the stories inspired by my family became one of the ways I help care for it.

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 consult your physician or another qualified healthcare 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.