How to Find and Give Hope in the Bleeding Disorder Community

I get many opportunities to travel across the country to speak with families affected by bleeding disorders. Everywhere I go, I see familiar faces — faces that bring me great joy. There are lots of hugs, and each smile warms my heart. My talks change from event to event, but each time I make sure to include a message of hope. I am all about hope. But my message is not only about finding hope; it is also about giving hope.

I hear: “OK, Cazandra, I don’t speak to audiences or write blogs and columns. How do you expect me to give hope? I am too busy!”

It is easier than you think.

Responsibilities fill our lives: work, family, school, church, chauffeuring the kids, finances, volunteering. Multitasking is a way of life for many. However, to those of us who think we are amazing multitaskers, I would say that our ability to truly listen with intention is not as good as we think. We try to do everything and often do many things “OK” instead of a few things extremely well. When yet another event pops up on the calendar, a thought arises: “I don’t have time to go to the chapter meeting. I’ll go next time.” Sometimes we give in and let a prime opportunity pass us by without considering the blessing that could come from being present with our extended family — our community.

You don’t have to be a professional speaker, teacher, or celebrity; sometimes you just have to show up. Half of the battle is showing up. Family education weekends, educational dinners, the annual walk, Blood Brotherhood and Blood Sisterhood events — there is always something to attend in the community. And while attending these events or helping to plan activities, you will find the opportunity to listen and be present for someone. Someone, right now, needs to be heard and you may be the person who validates their story and struggle. You don’t need to have the answers; sometimes it is simply enough to listen.

I always tell my audiences that if they do only one thing at the conference, they should make a new connection. Take home one phone number, email, or social media handle to connect through after the event. I don’t necessarily mean they should be the recipient of the new connection’s support. Rather, I want them to be the one who listens. I want them to be the person who tells a new mom that everything will be OK. That inhibitors are scary, but their son is doing better. That the first bleed will happen, and life will continue. That they understand how they are feeling. They understand.

Those words are gold to a parent of a newly-diagnosed child with a bleeding disorder.

See? You can be the provider of hope because you are warriors, and warriors take care of each other.

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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 Services, and are intended to spark discussion about issues pertaining to hemophilia.