Finding a sense of community has been important in my journey

One of the most frequent questions I hear is, “How do I find community?” The question resonates deeply with me because, like many others in the bleeding disorders community, I’ve struggled with feeling isolated and misunderstood. Finding a sense of belonging has been a journey, one filled with trial and error, moments of vulnerability, and the realization that community isn’t just about finding people; it’s about creating meaningful connections.

When I was younger, I didn’t know anyone else with a bleeding disorder. Back then, resources were limited, and the internet hadn’t been invented yet. I often felt alone, as if I were carrying the weight of my hemophilia diagnosis without anyone truly understanding what it meant. That loneliness was tough.

My first step toward finding community was through organizations supporting people with bleeding disorders. When I lived in Wisconsin, I volunteered for the Great Lakes Hemophilia Foundation and sat on its board for a time. Volunteering introduced me to people who not only shared my diagnosis, but who also understood the challenges of living with a bleeding disorder. These gatherings were transformative for me; they offered a safe space to share my story, listen to others, and feel seen and heard.

During the COVID-19 pandemic, I found connections online. Social media groups, forums, and virtual events became invaluable resources, especially during times when in-person events weren’t possible. It was comforting to know that I could reach out at any time, whether to ask a question, vent about a challenge, or simply share a victory, no matter how small.

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Take that first step

What I’ve discovered along the way is that most everyone is nervous when attending an event, especially for the first time. I’ve learned that you have to take that first step — whether it’s reaching out to a local hemophilia chapter, attending a conference, or joining an online group or event. Putting yourself out there can feel intimidating, especially if you’re introverted or unsure what to expect. I’ve been there, and I can tell you, it’s worth it.

Community is about more than shared experiences. It’s about building relationships with people who “get it,” who understand not only the medical aspects of living with a bleeding disorder but also the emotional and practical challenges. It’s about finding people who can celebrate our victories, no matter how small, and stand beside us when things feel overwhelming.

I’ve also learned that community looks different for everyone. For some, it might be a tight-knit group of friends from an event or a support group. For others, it could be an online space where they feel safe to share. And for many, it’s a mix of both. What matters most is finding the connections that work for you and make you feel supported and understood.

To anyone out there searching for their place in this community, I want to say this: You’re not alone. The bleeding disorders community is filled with people who care deeply and want to welcome you. Take that first step. It might feel daunting, but the connections you make will change your life.

Finding community has been one of the most rewarding parts of my journey. It’s taught me the power of vulnerability, the strength in shared experiences, and the incredible impact we can have on one another. Together, we’re stronger — and together, we can face whatever comes our way.

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.