Things that scare me as a care partner

Halloween is one of my daughter’s favorite holidays. She looks forward to creative costumes and makes drawings of pumpkins, ghosts, and bats. Here in the Philippines, people have different attitudes toward the occasion, but that hasn’t dampened her enthusiasm.

As I write this, we have a Halloween display in our dining area, complete with tiny LED bat lights. My daughter, Cittie, has happily offered it as a backdrop for the content I film.

This season has me thinking about the things that scare me. One feels harder to talk about than ghosts or monsters: the possibility that my own health might need more attention than I feel prepared to give it. I try not to dwell on it, but every now and then, the thought creeps in.

My husband, Jared, has severe hemophilia B and epilepsy. Part of how I care for our family is by helping maintain our financial stability. I’ve written before about how job stability became a form of caregiving for me. Knowing that we can cover our household needs and prepare for his treatment matters deeply.

But sometimes, that responsibility makes it frightening to consider what could happen if I needed care, too.

Recommended Reading

Nov. 3, 2022 Columns by Joe MacDonald

Halloween Brings Back Memories of a Hospital Staff’s Kindness

When my own health feels like another expense

I struggle with health anxiety. When I notice something unusual in my body, my mind tends to get ahead of me. My thoughts can quickly move beyond what it might mean medically.

I also think about what finding out could cost. Would there be consultations? Tests? Treatment? Where would the money come from? I don’t want my needs to draw from Jared’s factor fund or our family’s core budget. Access to factor replacement therapy already requires planning, and I want to protect what we’ve set aside.

These fears become louder during stressful periods, especially when a major expense, a job change, or a decision about our daughter’s schooling makes me more conscious of our finances.

Yet, I also recognize the problem with treating my health as something that can wait until everything else feels secure. There may always be another expense or uncertainty. If something needs attention, I want to be able to address it rather than let fear keep me from finding out.

Knowing this doesn’t automatically make me calm. It gives me a direction to move in, even when I’m anxious.

Remembering that I receive care, too

I also need to remember that I’m supported. Jared takes care of our home, makes sure we’re fed, and handles chores. These household responsibilities are a substantial contribution to our family’s well-being. They make room for me to work and attend to other needs.

He also talks with me when I’m struggling. He provides emotional support and sometimes helps me relax. His care reaches the part of me that worries about whether I can keep everything going.

Moving forward takes discipline, especially in how I respond to my thoughts. I’m learning to recognize intrusive thoughts without giving each one so much weight, and to distinguish a concern that needs action from a frightening possibility my mind keeps revisiting. That also means learning to relax, allowing myself to rest, and accepting Jared’s support when I struggle to quiet my mind.

Meanwhile, Cittie’s tiny bats remain in our dining area, ready for their appearance in my next video.

I can enjoy the little world she’s created while acknowledging the fears I carry beyond it. And when those fears feel overwhelming, I can talk to my husband and let him care for me, too.

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.