Learning that a medical or genetic diagnosis may affect your family can feel stressful, confusing, and at times overwhelming. Flooded by questions, concerns, and uncertainty, the path ahead may seem rocky and unclear. Where to even begin?
The process may be prompted by symptoms, when a routine medical test triggers follow-up, or even when a family member receives a diagnosis that 'runs in families.' This, in turn, will likely initiate a long and sometimes anxiety-inducing clinical evaluation.
A clinical evaluation may include a physical exam, blood tests, imaging scans, and genetic testing. At any point, a medical diagnosis may or may not be identified or even helpful. For many families, a complex medical diagnosis leaves them feeling like they have more questions than answers. Families are often tasked with making treatment decisions in the face of incomplete information or before they have had a chance to make sense of the choices and their implications.
Booked solid and often with extended wait times for appointments, medical practices often have limited time to cover more than the 'basics': reserving the appointments for exchange of medical information and treatment options. These busy practices can offer only limited opportunities to reflect on more delicate, time-consuming, and time-sensitive topics.
Families are often told to 'go home to reflect and discuss' or to seek treatment from a psychologist or counselor. Traditional psychotherapy or counseling tends to focus on past experiences and how they influence meeting the challenges of everyday life. However, they may lack experience with the highly technical or ‘medicalized’ concerns central to a family’s experience.
At Moving Beyond a Diagnosis, I work with families to bridge this gap between clinical medicine and therapeutic counseling. I offer families a chance to reflect and make space to explore their beliefs and values as well as their goals and priorities in moving forward. I guide families in better understanding genetic risks and available testing, making use of genetic advances to maximize health, and building care, referral, and support networks. My holistic approach integrates and coordinates medical, psychiatric, and developmental needs and care.
My hope is to provide a safe environment to explore a family's unanswered questions and concerns and to help families formulate strategies for moving forward. Through ongoing support, counseling, education, advocacy, coordination of care, and grief and bereavement services, our work together centers on strategies maximizing individual and familial quality of life.