Families may feel a range of emotions after the diagnosis of a genetic condition. You may feel afraid of what is going to happen next. Or, you may have a sense of relief from learning what the cause of a medical problem is.
Talk to your family
The decision to share your diagnosis with different people in your life is personal. Many people start by sharing the diagnosis with their family. However, there is no one-size-fits-all family. Your family is the group of people who are important to you. They might be related to you biologically, legally (through adoption or marriage), or emotionally (through affection, dependence, obligation, or cooperation). Family can include relatives such as siblings, parents, aunts, uncles, cousins, and even close friends.
Why should I talk to my family?
Your relatives are the best source of information about your family. It is helpful for you to know your whole family health history, including genetic conditions and other conditions—common and rare, mild and fatal, acute and chronic—that might run in your family.
You are also a source of health information for your relatives. Putting the whole picture together will help you and your family members:
- Identify risks due to shared genes.
- Talk to each other about health (including quality of life).
- Summarize health information to give to a healthcare provider.
- Make informed decisions about your health.
Another reason why you may want to talk about the condition with your immediate and extended family and friends is that people who know about and understand your condition may be better able to understand your family’s needs. They can be a valuable source of support for you.
Who should I tell?
Think about these questions when deciding who to tell:
- Who will provide me (and my partner, children, etc.) with the most support?
- Do any of my family members or friends have experience with genetic or health conditions?
- How have my family members or friends dealt with a health issue in the past?
- How will telling people make me feel? Comforted, uncomfortable, scared, relieved?
- Are there family issues that would make sharing the diagnosis painful or awkward?
- Do I gain strength and well-being from talking with friends or family?
- Are any of my other family members at risk for this condition too? Would they benefit from genetic testing?
What should I tell?
You should be honest about the diagnosis, your emotional state, the fact that you are learning, and your hope for the future. Some topics to share are major signs and symptoms of the condition and how the condition is passed down through families. It is up to you how much or how little you tell.
How do I tell my family?
Use what you have
Test results, letters from your doctor, or other information you received about your diagnosis can be shared with family to help them understand your circumstances. It may help explain their chances of having a genetic condition or the chance of children inheriting the condition from their parents.
Websites and brochures that have been useful for you might also be useful for your family members. This website can be shared to help explain genetics and family health history.
Talk in a group
Family history and other health information is often shared during conversations at events like birthday parties, weddings, reunions, religious gatherings, holiday dinners, and funerals. These events provide an opportunity to talk to family members about their lives. You can ask them questions about their health and tell them what you know about yours.
Plan an individual conversation
After you have brought up your diagnosis, you may want to talk with certain family members in more detail. Some people respond better to one-on-one talks rather than conversations in a large group setting. This will give you the chance to address any questions they have and ask questions of your own.
These individual talks should take place when both you and your family member feel up to it: you should not feel rushed or tired. Give the conversation the energy and attention it deserves. Also make sure your family member does not feel threatened. Let him or her know you are open to questions and that it is not a one-time conversation; the discussion can continue in the future.
If you have a friend or family member who is a medical professional or who understands genetics or your condition and has been a help to you throughout your diagnosis and treatment, it could be useful to have him or her there for support during the conversation.
Send a letter
You may wish to send a letter to your family with an update on your health and information about your genetic condition. Your doctor or genetic counselor may be able to help you write this letter and identify who in the family would beneﬁt from being informed.
How do I prepare for the talk?
Know the facts
Know the facts about the condition so you can answer any questions your family members have or refer them to other resources. Use your own experiences and information you learned from your doctor and others.
Know how it might impact your family
For each family member you talk to, understand what your diagnosis might mean for him or her. For example, other family members may have an increased chance of being a carrier for the condition. This means they have one copy of the gene change, or mutation. This is not a medical problem because most carriers do not have symptoms of the condition. However, it is helpful information for family planning.
Get ready for different reactions
There is little you can do to control your family member or friend’s response to the information. Some family members or friends may not react the way that you wanted or expected. Different people are at different emotional places at different times and will understand the information differently. It is normal to be anxious or uncomfortable if something is unfamiliar. This can sometimes cause people do or say things that are hurtful.
Some of your family members or friends may not want to learn information regarding your diagnosis. Although this can be hurtful, be sensitive to a person’s wishes not to talk about certain topics. They many just need some time to understand the information before they can give you the response you want and need.