Social maladjustment is an unspoken issue in the hemophilia community

Facing adversity isn't an excuse to behave poorly, a columnist argues

Alliah Czarielle avatar

by Alliah Czarielle |

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As a “HemoWife,” I’ve had the privilege of connecting with numerous people in the hemophilia community. While our shared experiences allow us to create a strong bond, one important topic often remains unspoken: the social and mental maladjustment that some people with hemophilia may face due to their unique life experiences.

This topic became relevant to me after I felt that someone in the community had crossed over my boundaries. While I don’t wish to delve into specifics, the interaction has prompted me to reflect on the broader issue of how people in the bleeding disorders community might struggle with social interactions, empathy, and respect.

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An illustration of a blood vessel.

Similar quality-of-life problems reported by hem A and B patients

Growing up with hemophilia is a unique and challenging journey

My husband, Jared, who has severe hemophilia B, can attest to the fact that growing up with hemophilia is a journey unlike any other. It’s a path filled with challenges, causing people to become resilient and develop a unique perspective from a young age.

However, this path can also be isolating. Many individuals with hemophilia find themselves alienated from or disregarded by their peers and society as a whole. For some, this isolation can lead to deficiencies in empathy and social skills.

Consider for a moment the childhood of many hemophiliacs. Overprotective parents may prohibit their children from attending important social events like parties and sports activities out of fear that overexertion may trigger a bleed. If this happens repeatedly, the child’s emotional growth and independence may be delayed. This can result in difficulties when trying to assimilate with others who have not faced the same restrictions and challenges.

My intent is not to place blame on anyone, but to acknowledge the unique struggles that some people with hemophilia face. It’s important to recognize that these struggles can sometimes manifest in less than desirable ways, affecting how the individual interacts with others. Therefore, it’s crucial to have structures in place that can guide patients’ values, helping them mature into responsible, respectful, and decent adults.

One might argue that people with disabilities, including hemophiliacs, are honorable due to the harsh difficulties they’ve encountered. However, while it’s true that these individuals have overcome much adversity, this isn’t a free pass to take advantage of other people, nor should it excuse a lack of empathy or respect toward others.

Empathy and respect should be at the core of every interaction

It’s imperative to remember that regardless of one’s life experiences or challenges, there’s no excuse for treating others with disrespect. So how can we ensure that people with hemophilia mature into moral, ethical, and decent adults?

Firstly, awareness is key. We need to openly acknowledge that some people may struggle socially and emotionally due to their unique experiences. By bringing these issues to light, steps can be taken to address them.

Hemophilia organizations can play a crucial role by implementing programs and support structures that focus not only on physical health but also on mental and emotional well-being. These programs can include mentorship initiatives, workshops on communication and emotional intelligence, and access to mental health resources.

It’s also essential to foster connections and encourage interaction with people outside of the hemophilia community. Opportunities to interact in a controlled setting, like dating events and mixers, can help young adults with hemophilia learn to socialize with peers from different walks of life. Partnerships with other health organizations can also be explored, giving members of each group a chance to interact with one another.

Being proactive is key

Addressing the social and mental maladjustment that some people with hemophilia may face isn’t about placing blame or judgment. Instead, it’s about recognizing the unique struggles that can affect social and emotional development, and taking proactive steps to support mental and emotional maturity.

People with hemophilia are, indeed, honorable in their own right. But it’s crucial that we also emphasize the values of respect, kindness, and empathy. In doing so, we can ensure that our community continues to grow not only in strength but in character, becoming a source of inspiration and support for one another and the world beyond.

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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