How hemophilia reshaped my husband’s definition of masculinity

Disability fostered a more wholesome approach that parted from societal norms

Alliah Czarielle avatar

by Alliah Czarielle |

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In a society deeply rooted in patriarchal values, expectations regarding masculinity often dictate men’s roles and behaviors. With its historical background of colonization, the Philippines, where I live, has fostered a set of traditional norms regarding how men must assert dominance, provide for their families, and adhere to specific standards of appearance. However, for men with disabilities like hemophilia, these norms pose a unique challenge that requires reevaluating the definition of manhood.

Filipino culture embeds courtship rituals with notions of masculinity revolving around physical strength, endurance, and the ability to impress others. These rituals require men to prove their worth through physically demanding tasks, perpetuating the idea that masculinity is inherently tied to physical capabilities. Additionally, the expectation of being the primary breadwinner further pressures men to seek financial success abroad while their female partners take on domestic responsibilities. However, for people like my husband, Jared, who live with hemophilia, these conventions may prove unattainable.

Jared’s journey as a man with hemophilia reflects the inner struggle many face when confronting societal pressures. During his adolescence, he found himself caught between conforming to conventional masculine ideals and acknowledging his physical limitations. This tumultuous period was marked by anxiety and low self-esteem as he tried to bridge the gap between society’s expectations and his own capabilities.

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Redefining masculinity: A personal evolution

Entering adulthood marked a crucial turning point for Jared. As he gained a firmer grasp on his individual identity, he realized that his self-worth extended beyond the narrow confines of traditional masculinity. He began redefining what it meant to be a man by prioritizing activities that brought him fulfillment and joy. Rather than striving to meet societal benchmarks, he focused on crafting his own narrative of masculinity based on living life to the fullest within his present capacity.

Jared’s journey underscores the power of self-acceptance and autonomy in reshaping the concept of masculinity. By acknowledging his limitations and capitalizing on his strengths, he emancipated himself from the constraints of societal expectations. He now describes his approach to life as “on physical autopilot,” doing his best to manage his hemophilia while dedicating most of his energy to his passions, which include food, fatherhood, and assisting others to the best of his ability.

My perspective on gender roles

As Jared’s partner, I align my perspective on gender roles with independence and shared responsibility. Our relationship thrives on mutual support rather than rigid expectations. I don’t require my partner to prove himself to anyone for me to deem him worthy. I identify as an independent woman who enjoys managing most tasks on my own. From the very beginning of our relationship, I’ve emphasized that all I desire is a partner I can return home to.

Masculinity isn’t constrained by predefined standards. Instead, it’s about embracing one’s journey, acknowledging limitations, and pursuing growth on personal terms. Moving forward, perhaps modern men can learn something from men with disabilities who have demonstrated courage to break free from societal norms and live life as their authentic selves.

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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