Resources for Sharing Your Diagnosis

By Sean Comerford

There will always be certain things you share with your family.  When you are a child you might share toys and hand-me-down clothes. As you grow older, you might start to share more; stories, meals, friendly catching-up phone calls, frustrations in difficult times, and maybe the occasional knowing glance when that one family member says that one thing. But, no matter your age, you will always share one thing with your family: your genes.  Your genes influence your health, for better and for worse.   Knowledge of your genes is powerful information about not just your health but your family’s health too. Telling your family about your own health conditions can enlighten them about themselves.

Sharing personal information can be very difficult, because, well, it’s personal.  Talking about yourself is not always easy, especially when the details are so private.  Genetic Alliance, in partnership with Genzyme, has created a series of guidebooks to help you through the process of sharing health information with your family.  These books detail specific genetic disorders such as Pompe, Gaucher, and Fabry but some basic approaches and strategies can be used to help you talk about your health history, whatever it is, with your family.

How to prepare for the talk

  • Know some of the details about your health condition so that you can answer questions your family members might have or refer them to other resources. You can use your own experiences as well as any information you’ve learned from your doctor.
  • For each family member you talk to, understand what your condition might mean for him or her. You all share the same genes, so your diagnosis might also mean that some of your relatives have the same condition.
  • Everyone responds to difficult information in different ways. Be sensitive to a person’s wishes not to talk about certain topics.  Some relatives might not be comfortable talking about a health condition right away.  Make it clear that you are available to talk whenever they are ready and that you will respect their wish not to talk in the meantime.

How to talk to your family about a health condition.

  • Family events like holidays and reunions are a good and even natural place to discuss health information with families.
  • Have medical information and resources accessible in case a family member shows interest or would like more information.
  • Plan a one on one if it seems more appropriate for a certain family member
  • Bring support whether it’s another family member, a friend, or a medical professional
  • If conversation is difficult, send a letter or an email. A sample letter can be found in the guidebooks for sharing a diagnosis.