How to Talk with Family and Friends About Your Child's Rare or Undiagnosed Condition

Talking with family and friends about your child's rare or undiagnosed condition can be challenging. However, it can be helpful to share information with family and friends that are part of your child’s life because children with rare or undiagnosed conditions might have special needs. However, even if you have a sense of what's going on, it can still be tough to explain all the details to family and friends.

Chances are you've been through several doctors, therapies, and tests in search of a diagnosis, whether your child’s been diagnosed with a rare condition or you haven’t been able to get a diagnosis. When you can’t understand your child’s condition, trying to explain it to others is challenging.

When you are ready to discuss your child’s condition with family and friends, ensure you have all the necessary information. Make sure you don’t share more than is relevant or necessary to help avoid unnecessary worry or concern for others in your life who might not understand the medical details of your child's situation.

Sometimes, waiting to talk with family and friends is best until you have more information, which is especially true if you're still waiting for a diagnosis from your doctor or if you're not sure what the next step is in your child's care plan. 

Make sure that the information you share with family, friends, and other loved ones is clear and direct:

• Tell them your child's condition, how it impacts their day-to-day life, and how they can help.
• Share only as much information about your child's condition as you’re comfortable doing. Don't force yourself to tell someone about a specific symptom or treatment plan. You can leave it out or bring it up later when you feel ready. Having an open discussion about how much detail to include can help everyone feel comfortable discussing the issue.
• Tell people when they should expect more information from you in the future (if at all) or an update. For example, some rare conditions have many unanswered questions requiring research; others have minimal treatment or management options; others are just really boring! Whatever your child’s situation — be honest with your loved ones and let them know if there will be further updates over time (if at all).

Tell family and friends in person, if possible.

You will probably want to speak with your family and friends to see how they react as you talk about your child's diagnosis. 

However, email might be the easiest way to share information when many people need to know about your child's condition at once.

• Email is convenient for sending documents and links. You can send an entire document or just a few sentences that explain what’s going on with your child. If you want to share medical records or other documents with family members, email is a great way to do it.
• Email is also great for sending links (URLs) and attachments like photos, videos, and audio files that show what your child looks like or how much they have changed since birth.

Before talking with family and friends, think about how much you want to share.

Before you talk with family or friends, think about how much you want them to know. Of course, your answer will depend on the person and the relationship. For example:

• If it's someone close to you, like a spouse or sibling, then it might be okay for them to know more details about your child's condition.
• If it's an acquaintance whose opinion doesn't matter much — a colleague at work or someone from your place of worship — then they may not need as much information as others.
• In some cases, however, even if a person isn't close with you but has demonstrated interest in learning more about rare conditions (for example, by asking questions), sharing more details may be appropriate because this shows respect for their curiosity and desire to learn more.

When talking with family and friends, don't share any information you're uncomfortable sharing.

There are no rules regarding revealing details about your children's health. If something makes you feel too vulnerable or uncomfortable, there's no reason why you need to tell someone else. You can always change your mind later on if you want more time or help deciding what is okay for others to know at that point.

In addition, if someone asks a question that makes it clear they don't understand how rare their child's condition is or how challenging it is on parents — or both — they might think their lack of understanding means they've done something wrong as parents (which isn't true). It's important not to let people blame themselves or each other when they make mistakes while learning new things together!

It can help to think carefully about what you want to say.

• If you’re unsure, don’t feel you must share all the information at once.
• You don't need to talk about it with everyone at once, and it's okay if some people don't know everything immediately.
• Don't feel like there must be one "right" way or place for people in your life to hear about a diagnosis — you get to decide that!

If you’re frustrated or upset when talking with family or friends, take a break from the conversation or end it.

You don't have to feel like you have to keep answering questions, even if they are coming from well-meaning people. If you think the conversation has gotten too far away from what is helpful, or if you feel overwhelmed by it, just take a break! Or end the conversation. Take care of yourself first and foremost.

It can be hard to know what to say, especially when you’re nervous or upset. But sharing information with family and friends can lead to better support for your child, so it’s essential not to keep this information to yourself. In the end, remember that even if you make a misstep, your family and friends want what's best for you — and they'll likely understand where you're coming from if you decide not to share too much. So ask them for their patience as you figure out how much information suits the situation.

Support and Hope 

Parenting a child with a rare or undiagnosed condition can be daunting. Fortunately, resources are available to help. In addition, the dedicated team at TGen’s Center for Rare Childhood Disorders (also known as the Center) and others continue their groundbreaking research to find answers and develop treatments.

Through the generosity of donors, the Center provides genomic testing for families at no charge and continues its work to provide solutions and cures to families and their children. 

There are so many ways you can have an impact. Whether you make a cash donation, participate in a fundraising event, or donate gifts of stock or securities, your donation will enable the Center to continue its groundbreaking research leading to discoveries that mean a better future for children with rare childhood conditions. Even simply sharing the message with friends, family, and associates can help.