When Grief Doesn’t Have a Name
For many families in the bleeding disorders community, grief does not begin with loss. It begins with uncertainty.
For Anne Goodman, MPH, that journey started more than 14 years ago when her young daughter began experiencing unexplained bruising and pain. Doctors dismissed the symptoms. Specialists could not provide answers. Anne knew something was wrong, but for years, no one connected the dots.
Everything changed after her daughter experienced severe complications following a routine tonsillectomy. That moment finally led to the diagnosis that explained years of unanswered questions: a bleeding disorder. Later, Anne learned she shared the same diagnosis herself.
“It was shock, validation, confusion, anger, and grief all at once,” Anne shared.
Grief Beyond Loss
Anne’s work today focuses on helping others understand that grief is not only connected to death. Grief can come from uncertainty, missed experiences, difficult diagnoses, and the emotional weight of caregiving.
As a Certified Grief Recovery Specialist®, Anne now helps others process those feelings openly and honestly. Her own experience taught her that unspoken grief often affects mental health, relationships, and physical well-being.
“Grief recovery has allowed me to sit in the space of uncertainty and be okay with those feelings,” Anne said. “It also taught me to answer honestly when someone asks, ‘How are you?’”
Finding Support Through Community
Anne has been involved with GOBDF for about five years and says the community has been an important source of connection and understanding.
“GOBDF has so much to offer to our community from adults to teens to small children,” she shared. “It’s a place where people can connect with others walking the same journey.”
That support became especially important during difficult moments navigating healthcare, advocating for her daughter, and balancing the emotional realities of caregiving.
Anne says one of the most meaningful lessons she learned is that grief should not be hidden.
“Grief is not a problem to be fixed,” she wrote. “It is a sign of love, of connection, of being deeply human.”
Supporting Families Through Mental Health Awareness Month
During Mental Health Awareness Month, Anne hopes families understand they are not alone.
Living with a bleeding disorder can bring emotional challenges that are not always visible to others. Parents often carry the weight of advocacy, appointments, uncertainty, and caregiving while trying to stay strong for their children.
Anne believes honesty, emotional support, and community matter.
“Supporting a child with chronic illness means building a home where emotions are not just allowed, but encouraged,” she wrote.
A Message to the Community
Anne’s story is a reminder that strength and grief can exist together.
For families navigating bleeding disorders, mental health matters. Community matters. And asking for support is part of healing.
“If you are in the thick of it, numb, angry, exhausted, or just getting by, know this: there is a path to healing.”
“Your grief is valid. Your strength is real. And your voice matters.”
Anne Goodman