My husband’s hemophilia helped him sense his life purpose early

How his youthful understandings have affected my own search for meaning

Alliah Czarielle avatar

by Alliah Czarielle |

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One ordinary evening, while a dear cousin and I relaxed in my living room, we delved into a profound conversation about purpose. We pondered why some people who struggle with mental health would cling to altruistic pursuits despite financial challenges they may have, especially since those challenges could create more mental health problems. Though seemingly irrational, perhaps the help that they offered provided them a sense of purpose, a reason to live.

My mind shifted to Jared, my husband with hemophilia B and epilepsy. He lives life akin to the forgetful Dory in “Finding Nemo“: “Just keep swimming, swimming, swimming,” she says. Likewise, whenever Jared faces a challenge because of one of his illnesses, he responds with a simple “Buhay eh” — “That’s life” in Filipino.

Later that night, I asked him whether having a life purpose was important to him. He said yes while also acknowledging the rare advantage his chronic illnesses gave him when realizing that purpose.

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A ‘built-in’ sense of purpose

While many spend years searching for life’s meaning, Jared, at 30, already lives with a strong sense of his “why.”

As a young child in and out of the hospital, he grappled with tremendous guilt over how his situation affected those who cared for him. As a result, he constantly practices a balancing act between respecting his limitations and challenging them so he can do better.

Today, guided by the desire to be less of a burden to the people he loves, he chooses to thrive despite his limitations, transcend societal boundaries, and serve others when he can. What gives his life meaning and purpose is to make the best of every situation while also giving back to the relationships that nurtured him and helped him grow.

Because his hemophilia makes his life uncertain, with bleeds that could strike at any time, he never passes up a single chance to be productive.

Purpose as a guidepost

Research underscores the vital role of purpose in our well-being. People with a strong sense of purpose tend to live longer, whereas the absence of it can lead to despair. Yet most people don’t feel they’ve found a sense of purpose and meaning until they reach age 60, at least according to one study.

Those still in the process of discovering their purpose may find that anchoring themselves to fixed goals can lead to emptiness once these goals have been achieved, leading them to feel they must search once again. Before they know it, they’re caught up in a seemingly endless search.

In my own case, I’ve learned over the years that my purpose doesn’t lie in my academic achievements, my career, or even my status as a parent. My purpose is my why, my reason for living, my guidepost through life. No matter where I go, it’s my purpose that steers me in the best direction for me.

Through caring for Jared and our daughter, I’ve come to understand, at age 29, that one of my life purposes is to care for the people I love, including guiding my child as she grows up. And through my constant exploration of my interests (partly because I have attention-deficit/hyperactivity disorder), I’ve realized that I’d like to enjoy the things I love and the company of good people, to never stop learning, and to taste the entire experience of life, through all its ups and downs.

It’s OK not to define life’s grand purpose

Jared’s sense of purpose evolved with time and experience, but his disabilities, and making sense of them, gave him a head start at understanding that purpose and why it matters. Having to face some of life’s realities earlier, as well as his own mortality, helped him get a clearer image of what he wants.

Jared’s “Buhay eh” philosophy reflects a resilient acceptance of uncertainty, an attitude that transcends the need for a fixed destination. Jared’s purpose is influenced by the way he chooses daily to live with the challenges his health conditions pose so he can take life on his own terms and in a meaningful way.

Many struggle with finding their life purpose. Through Jared, I’ve learned that maybe we paint a clearer picture of it as we grow from life’s challenges, since they teach us more about ourselves, the way we live, and the why behind the things we do.

In Jared’s case, his rare experiences helped him understand that what gives his life meaning and purpose is transcending his limitations so he can nurture his relationships with others and savor life’s fleeting moments. Purpose and meaning, after all, aren’t discovered in a day, and we never know what tomorrow might bring, so why not seek to discover meaning and purpose in the unique ways we tackle the little things all the time?

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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