Embracing Strength and Advocacy: A Personal Journey Through Life with a Bleeding Disorder

Living with a bleeding disorder isn't merely a medical condition; it's a profound journey of self-discovery, marked by unique challenges and uncertainties. Every day brings new hurdles, from physical limitations to navigating societal perceptions. Yet, a personal mantra, "Be Scared and Do It Anyway," has been a guiding force, particularly when I moved from Ohio to Utah with just two acquaintances, suitcases, and a case of Ski soda.

This phrase serves as a reminder of my inner strength and resilience, empowering me to confront obstacles head-on.

In this blog post, I will share my personal journey, intertwining my experiences with the importance of self-advocacy and the collective strength of our community. 

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Defying Limitations

Navigating life with a bleeding disorder often feels like walking a tightrope, balancing between the limitations imposed by my condition and the desire to live life fully. The phrase "Be Scared and Do It Anyway encourages me to challenge these limitations and redefine what is possible. I have learned to push past the boundaries that others (including medical staff) may perceive, embracing my identity beyond my condition. This mindset has allowed me to pursue my passions, engage in activities I love, and live life on my own terms.

I remember  when I joined Scouting, I hesitated, I feared my hemophilia would hold me back. However, I decided to take a leap of faith, with the support of my parents, reminding myself that my bleeding disorder does not define my capabilities. With planning and the support of my friends, I embarked on my Scouting career, feeling a sense of freedom. 

I achieved my Eagle Scout, the accomplishment that I had longed for. It was a powerful reminder that I am more than my diagnosis; I am a person with dreams, aspirations, and the ability to conquer challenges.

Embracing Resilience

Resilience is a cornerstone of my journey. 

Each setback I encounter is met with the unwavering belief that I possess the strength to overcome it. Changing my mindset that challenges are not roadblocks but opportunities for growth has greatly helped me in my mental health challenges, knowing that there is a brighter day on the other side.

I have learned to navigate the complexities of my condition with grace and determination, emerging stronger with each obstacle I face. This resilience not only shapes my personal journey but also inspires those around me to embrace their own strength.

There have been moments when I faced significant health challenges, such as unexpected bleeding episodes that disrupted my daily life. In those times, I felt overwhelmed and frustrated, questioning my ability to cope. Yet, I found solace in the support of my community and the knowledge that I had the power to advocate for my needs.

By communicating openly and seeking the right resources for me, along with the unwavering support from my husband, I was able to regain control over my health and continue pursuing my goals. Each time I overcame a setback, I grew more resilient, learning to trust in my ability to navigate life's uncertainties and to lean on those who truly want to see me succeed.

Advocating for Myself and Others

Living with a bleeding disorder has taught me the importance of self-advocacy. It is not just about asserting my needs; it is about amplifying the voices of those who may feel unheard.

My mantra, "Be Scared and Do It Anyway" empowers me to speak up, ensuring that my rights and the rights of others are recognized. Advocacy is a powerful tool for change, and I have become a passionate advocate for myself and my community, striving to create a more inclusive environment for all.

I recall a pivotal moment when I attended a health conference focused on bleeding disorders. I listened to various speakers share their experiences, and I realized that many individuals were hesitant to voice their concerns. Inspired by their stories, I took the initiative to share my own journey, highlighting the importance of patient-centered care and the need for healthcare providers to listen to their patients fully.

Since then, the response to my blog has been overwhelming; many reaching out privately, expressing gratitude for my willingness to speak up. This experience reinforced my belief that advocacy is not just about one voice; it is about creating a chorus of voices that demand to be heard. It is a reminder that we are not alone in our struggles; we are part of a larger community that thrives on connection and support.

Inspiring Others

In moments of isolation, I have found solace in the knowledge that my journey can inspire others. By sharing my experiences, I hope to encourage those facing similar challenges to confront their fears with courage and determination.

Every small act of kindness or understanding can have a profound impact.

When we take the time to listen, validate, and support one another, we foster an environment where people feel safe to express themselves. Whether it’s a simple word of encouragement, a shared story, or a moment of empathy, these gestures can inspire others to speak up and share their own experiences. 

"Be Scared and Do It Anyway" serves as a rallying cry.

A rally cry reminding us that our stories matter and have the power to inspire change.

By encouraging others to voice their thoughts and feelings, we not only help them feel heard and believed but also create a ripple effect of inspiration. Each person who finds the courage to speak up can motivate another, leading to a collective strength that transforms our community. No act is too small; together, we can build a culture of openness and support, where everyone feels valued and empowered to share their truth.

Celebrating Victories

Every victory, no matter how small, deserves celebration.

Living with a bleeding disorder means recognizing that success comes in many forms, and each step forward is a testament to my strength and resilience. 

For instance, one of my small victories is being able to walk up a flight of stairs without experiencing pain, or needing to heavily rely on the stair railing. This may seem like a simple task to many, but for me, it represents a significant achievement.

Each step I take is a reminder of my determination and the hard work I put into my physical health. Many don't know, but there have been several times, where my husband has carried me up or down stairs in our home because of bleeds in my ankles or knees, which also inhibits my ability to drive, because I simply cant press the gas or break pedal.

On the flip side, when I am not experiencing active bleeding episodes, another victory I cherish is remodeling my home along side my husband. Transforming our living space not only enhances our environment but also serves as a reflection of our personal growth.

The process of planning, executing, and seeing the results of our efforts brings me immense satisfaction. It’s a tangible reminder that we can create beauty and comfort in our lives, despite the challenges we face.

Mowing the grass is yet another accomplishment that fills me with pride. It’s a task that requires physical effort and focus, and being able to do it means I’m taking charge of my surroundings. The fresh-cut grass and the neat appearance of my yard symbolize my ability to manage my responsibilities and enjoy the simple pleasures of life.

No matter the victory, I ensure that it is personalized for me.

I avoid comparing myself to others, even those who may share similar struggles.

The truth is, the challenges I perceive may be vastly different from someone else's experience. By focusing on my own journey and celebrating my unique victories, I cultivate a sense of gratitude and fulfillment that fuels my path forward. Each small win is a building block, reinforcing my resilience and reminding me that I am capable of overcoming obstacles, one step at a time.

The Ripple Effect of Sharing Victories

By sharing my victories, I hope to inspire others to showcase their own achievements, no matter how mundane they may seem. There is always someone out there cheering you on, wanting to see you succeed—even if that support comes from sources you might not consider friends or family. 

When I share my experiences, I create a space where others feel encouraged to express their own triumphs. It’s a reminder that every achievement, big or small, contributes to the tapestry of our lives. The act of celebrating our victories together fosters a sense of community and connection, reinforcing the idea that we are not alone in our struggles.

It’s easy to feel isolated, sharing our stories can be a powerful tool for empowerment. It reminds us that our journeys are valid and worthy of recognition. So, let’s continue to celebrate our victories, uplift one another, and create a culture where everyone feels inspired to share their own stories of resilience and success.

The Power of Advocacy

Advocacy is not just a personal endeavor; it is a collective responsibility.

Voices often go unheard, advocating for ourselves and others is crucial for creating positive change. By recognizing our worth and asserting our needs, we empower ourselves and those around us. Advocacy fosters empathy, understanding, and a sense of community, allowing us to challenge systemic barriers and promote fairness and equality.

I have witnessed firsthand the impact of advocacy within the bleeding disorder community. Through collaborative efforts, we have successfully lobbied for improved access to treatment and resources, ensuring that individuals with bleeding disorders receive the care they deserve.

These victories remind me that our voices, when united, can create ripples of change that extend far beyond our individual experiences.

Utilizing Our Platforms

In today’s digital age, we have the unique opportunity to use our platforms to advocate for ourselves and others. Whether through social media, blogs, or community events, we can amplify underrepresented voices and shed light on important issues.

By sharing our stories and experiences, we foster empathy and understanding, creating a more inclusive narrative that values diverse perspectives.

I have found that social media can be a powerful tool for advocacy. By sharing my journey online, I have connected with individuals from around the world who share similar experiences. Together, we have created a virtual support network that transcends geographical boundaries. This sense of community has been invaluable, reminding me that we are not alone in our struggles and that our voices can resonate far and wide.

Embracing Change

As I reflect on my journey within the bleeding disorder community, I recognize the importance of embracing change. While resistance to new ideas can be disheartening, it is essential for our community to engage in open dialogue and consider diverse viewpoints.

By fostering an inclusive environment, we can harness our collective strength to drive meaningful change and create a brighter future for all.

I have encountered moments of resistance when proposing new initiatives or advocating for changes in established practices. However, I have learned that change often requires patience and persistence. By approaching these conversations with empathy and understanding, I strive to create a space where differing opinions can coexist, ultimately leading to growth and progress.

Expanding My Focus

While my advocacy journey has been deeply rooted in the bleeding disorder community, advocating for crucial positive change, I now feel compelled to expand my focus. 

My intention is to dedicate my efforts to transforming societal perceptions surrounding mental health and mental health crises. I aim to foster an environment where seeking help is not only accepted but actively encouraged.

This vital transformation is essential, as it can significantly impact the lives of individuals who may be struggling in silence due to stigma or fear of judgment.

To initiate this change, I believe it is crucial to lead by example.

By openly discussing mental health issues and sharing personal experiences, I hope to create a safe space for others to express their struggles without fear. This approach not only normalizes the conversation around mental health but also cultivates a culture of compassion and understanding in a world where such qualities are often in short supply.

While the bleeding disorder community has shaped me into the advocate I am today, I plan to advocate for the bleeding disorder community while engaging with other various communities, organizations, and platforms to raise awareness and educate others about the importance of mental health.

By providing resources, support, and information, we can empower individuals to seek help when they need it most. Together, we can dismantle the barriers that prevent open dialogue and create a society that prioritizes mental well-being, ultimately leading to healthier, more resilient communities.