How to Talk With Your Child About Their Rare or Undiagnosed Condition

Every parent hopes to have healthy children. But thousands of parents learn their child has a rare or undiagnosed condition every day. The journey to find a diagnosis can be long and frustrating. Explaining it to your child can add another layer of frustration. Helping your child understand their condition, especially when it affects their ability to engage in childhood activities, can be confusing and overwhelming.

Stress and Emotions

It’s natural for parents to experience stress and other emotions when their child is diagnosed with a rare condition or no diagnosis is available. Parents sometimes feel guilt and sadness. They may also feel anger—anger toward your partner, the world, or even, at times, toward your child.

Managing your stress is essential for you and your child. For example, a study of children with Type 1 diabetes found high levels of parental distress were associated with higher stress and depressive symptoms in their children.

Studies show that one of the best ways to move forward is directly addressing your child's medical condition. For example, one study of parents of children with cancer found those parents who took action and focused on the problem experienced lower levels of anxiety and depression than parents who denied or avoided the situation.

Of course, anyone who’s experienced the stress of having a child with an undiagnosed or rare disease knows that this is easier said than done. There are, however, steps you can take to manage that stress.

Ways to Talk With Your Child About Their Condition

It may be challenging to know where to begin. You may feel that there’s too much information or that it will overwhelm your child. You might also find it challenging to get your child to open up and share how they feel and cope with the situation. Whatever the case, keeping the lines of communication open is important for you and your child. Here are a few ideas that may help:

Reinforce Love

Make sure your child knows that you will always love them no matter what they say or think about their situation. Let your child know that you will do whatever possible to help them cope with any changes and keep them safe.

Discussing the Situation With Your Child

Depending on your child’s condition, there can be a lot of information to cover and many aspects that need to be discussed. Instead of covering everything all at once, try discussing things in smaller bits, giving your child time to take in the information. Trust your instincts to judge how much to say and when. Then, when the right moments appear, you’ll be able to talk with your child confidently.

Share age-appropriate information with your child in terms that they can understand. Don't give too much information, but don't hide the facts. If a child overhears a doctor or doesn't understand what's happening, they may begin to imagine the worst. As they get to know and understand your child, your child’s medical team may be able to offer guidance about ways to help your child feel in control when things seem out of control.

Medical talk can be upsetting and confusing to most adults, let alone children. Give the healthcare team feedback if they are not getting through or are confusing or frightening your child. If appropriate, help your child develop a list of questions for their healthcare team before visits and practice going through the questions to help your child become confident about speaking up when something is not understood.

It’s also essential to talk to your child about their feelings. You may be surprised about which aspects of their condition are most difficult for them. For instance, children who have conditions limiting their activity may be more concerned about why they can’t play with their friends than finding a diagnosis.

Consider asking to meet with a child life specialist (at the hospital or clinic) who can help your child talk about feelings and fears through conversation or play therapy.

In addition, having a rare or undiagnosed condition can also make children feel isolated at school or in social settings. Depending on their age, one idea is to work with them to explain their condition to people who ask questions or stare.

Young children naturally focus on more concrete information. Older children may try to go it alone. They may find it easier to talk to peers with similar medical conditions. Your child’s medical team can suggest appropriate chat rooms and options so they can make contact with other children with similar experiences.

Explaining Treatments and Procedures

Determining the timing to discuss treatments and procedures can be challenging. Sharing the information too early can be counterproductive, causing worry and anxiety about the upcoming procedure. On the other hand, waiting until the last minute may not allow enough time for your child to process and mentally prepare for a procedure.

You know your child best and should talk with your child’s healthcare team about the best ways to support your child based on their individual developmental and health needs.

Discuss what will happen, when it will happen, and why.
Describe any sights, smells, or sounds they may experience.
Describe things they might feel (i.e., pressure, pinch, cold), but be careful not to make promises about feelings (i.e., “It won’t hurt”).

Maintain Your Family Routine

Some parents tend to become overprotective when dealing with a sick child by sheltering their children or limiting activities. Others become overly permissive, letting children do things they wouldn’t usually allow. Regardless of their medical condition, all children crave structure. Your child may become frightened or confused if you suddenly break the rules. As much as possible, try to maintain the same family routine you had before your child became ill.

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.