Author: Isaac Hockey, Genetic Support Network of Victoria
The first steps from the clinical geneticist’s room can be daunting and lonely. You have received information that will have an indelible mark on the lives of you and your family.
There is no correct path to navigating the days, weeks, months, and years following the diagnosis of a rare genetic condition. People react differently to grief and loss. Some throw themselves into work. Some spend more time with their family. Others avoid social circles in the fear that people won’t understand what they are experiencing. Many experience a combination of these reactions.
However, rare disease is a misnomer. This path has been trod many a time already; patient support groups exist to help those going through the numerous appointments, tests, WebMD sites, doctors, and emotions that are normal life in the world of rare disease.
Patient support groups are varied. They differ in size, age, geography, condition or symptom category and the platform in which they exist. However, they have a shared goal: to create a community for people going through similar experiences.
A mother from the Usher Kids support group said that she feels "reassured” knowing that she has a community to call upon for support or information. "My son's diagnosis has been devastating for me and my family. I felt better knowing that I am not alone in this new journey. I also feel confident that with such an interested network of parents we will be able to work together in the future to achieve the best outcomes for our children.”
You may be wary of the veracity of information shared within a support group. However, as Deanna speaks about in Diagnosis Day, Episode 5: Finding Support, there are different notions of experts. Clinical, research, and lived experience experts have a joint role in supporting a family through a clinical diagnosis.
Within these support groups, lived experience experts offer support and information that most clinical or research experts cannot provide. Among other things, support group members share stories, images, research papers, recipes, and event invites.
Most of all, support groups are arbiters of empathy.
Whether watching from afar and endorsing with a ‘like’, or being your most vulnerable in sharing your experience, support groups offer a critical community foundation at all stages through life with a genetic condition.
Watch the Diagnosis Day mini-series.
Visit GSNV's website to find a support group that's right for you.