Reflecting on marriage goals, identity, and chronic illness

How to share ambitions as a couple while maintaining independence, too

Alliah Czarielle avatar

by Alliah Czarielle |

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I recently watched a video by a feminist content creator that struck a chord with me. She discussed women’s empowerment and the importance of not letting our entire life revolve around our partners. Women like myself, she said, must retain their identity and values and pursue their own career goals. If we focus on our dreams, the right person will come along, pursuing their own dreams alongside us.

However, my marriage to Jared, who has hemophilia B and a seizure disorder, made me ponder this message. Living with chronic illness requires adjustments, and partners must extend themselves to adapt to limitations.

Do I sacrifice too much for my partner? Have I changed my entire life path to accommodate him?

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Matching sacrifices

Some of the sacrifices I make for Jared include driving for him, as his seizures prevent him from operating a vehicle, and doing extra work at home when he has an active bleed and needs to rest in bed.

Admittedly, driving all the time can be physically and mentally exhausting for me, given my attention deficit/hyperactivity disorder, which makes me direction-challenged. As a result, I struggle to navigate the messy roads of metropolitan Manila, where we live in the Philippines.

I’m also not particularly domestic, having grown up unaccustomed to doing household tasks. My learning curve for domestic chores has always been steep.

Fortunately, Jared finds ways to make my sacrifices less burdensome. He serves as my personal navigator while driving and helps out with gas and food on the road.

When he can’t perform his usual home tasks because of a bleed, I step in, although he lowers his expectations and understands my limitations. He also tries to pitch in to the best of his ability, not letting a bleed stop him from doing whatever he can. Even minor tasks like tidying up the bedroom or fixing our bed can be a huge help. That way, I don’t get too stressed and still have time for myself.

It’s great that he acknowledges my sacrifices and reciprocates in his own way. Marriage can’t always be exactly equal for both partners, and we understand that.

Shared goals and unique desires

Jared and I married young, when we were uncertain about our life goals. Over time, I found joy in motherhood and learned more about what I want in life.

Some people find worth and meaning in climbing the corporate ladder. For me, my career is a means to an end: to provide for our family and maintain a healthy and enjoyable lifestyle. I’ve come to accept that I’m not tied to a specific career path. That way, we have more flexibility to adjust to our respective health conditions.

We’ve defined specific goals for our future, such as saving up and starting a self-sustaining business or two while keeping our current jobs. Investing in real estate is also on our list, to ensure that we have a home to pass on to our daughter when she becomes independent. One day, when our financial situation is better, we hope to travel around the Philippines and to other countries.

These goals are his and mine, and we respect each other’s individual approaches to achieving them, as well as our more unique desires. Jared tells me he’s happiest when other people are happy and when he can pursue his interests, such as cooking. As for me, I enjoy dabbling in the arts and occasionally collecting things I love. We give each other room to enjoy our passions so we can still live our own lives.

I’m not less independent

Living with a husband who has chronic illnesses requires making adjustments, but it doesn’t mean sacrificing my sense of self. Likewise, I encourage my husband to be as independent as possible while respecting his limitations.

Jared and I understand that we have shared goals and individual desires. We support each other wholeheartedly, finding ways to make sacrifices less burdensome.

Together, we work toward building a future for our family and passing on a legacy to our daughter, while still embracing our individual identities and aspirations. Through love, understanding, and encouragement, we navigate the challenges of chronic illness, finding strength in our partnership to achieve our shared (and individual) dreams.

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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