Discover the secrets of coping with a rare or undiagnosed condition in our latest blog post. Learn how to provide your child with the support they need and give them hope in the face of uncertainty.
You've just learned that your child has a rare or undiagnosed condition. You're scared, confused, and overwhelmed. Parenting a child with a rare or undiagnosed is a challenge. So how do you help your child cope? Continue reading for tips on how to help your child cope with a rare or undiagnosed condition.
The best way to help children cope with a rare or undiagnosed condition is by providing them with information. But it isn’t always easy for parents to know how much information their child needs or wants.
Before sharing information with your child, take some time to think about what they will need from you. Think about what questions they may have and how much detail they need for you to be able to answer those questions. Then, consider making a list of essential things for your child to know (you can include treatments and side effects).
As always, remember that every child is different! If you believe sharing more details would help your child cope better, go ahead and do so at whatever pace feels comfortable — but just make sure it’s not too much all at once!
Being open and honest is usually the best policy. Children are very perceptive and will likely know when their parents are not being completely honest with them, which may lead to confusion and mistrust. Parents should provide information in simple, age-appropriate language their child can understand. It’s also important to ensure your child knows you’re available to answer any questions.
As a parent, you want to fix the situation for your child. You want their condition to have a name and a treatment plan. Unfortunately, that isn't always possible. If your child has a rare or undiagnosed condition, there may be no cure or definitive treatment available at this time.
Your child may feel sad, angry, frustrated, and confused about having a rare or undiagnosed condition. They might also be afraid that no one else understands what they are going through. It's important to encourage your child to express their feelings openly and honestly—but also appropriately.
While it’s hard to predict how a child will react to the knowledge that they have a rare or undiagnosed condition, it’s essential to acknowledge their feelings. Reminding them that their feelings are normal can help.
Some children may resist discussing their concerns or feelings to protect their parents from becoming upset. It’s critical that children with rare or undiagnosed conditions feel that they can talk to their parents.
Children with rare or undiagnosed conditions often don't know what to say to others about their condition or how to explain it. You can assist them by helping them find a few sentences to describe their condition. It’s important to let your child know that what they want to share is their decision.
In addition, It may be helpful to role-play with your child to help them feel comfortable explaining their condition to others and anticipating any questions. Consider discussing any potential teasing that might occur and offer suggestions on how to handle it, e.g., ignoring it or using humor to diffuse the situation. It may be helpful to help your child learn how to focus on the things they have in common with their peers instead of their differences.
It’s not unusual for children dealing with rare or undiagnosed conditions to feel they have little or no control over their lives. Parents can help them feel more in control by offering them choices whenever possible. For example, let them make decisions about their diet or activities. When appropriate, have them participate in medical decisions.
Neither you nor your child have to tackle the situation alone. As a parent, it’s easy to be overwhelmed when your child has a rare or undiagnosed condition, making it challenging for you to help your child cope. Don’t hesitate to reach out to a counselor or a therapist for help. Ask your child’s healthcare team to recommend someone if you don't know of any.
Helping your child cope with their condition can be challenging. If you take steps to help them process the information and provide guidance, it can help them cope with their situation.
You can help us give hope to families waiting for a diagnosis. Through the generosity of donors, the Center for Rare Childhood Disorders (also known as the Center) provides genomic testing for families at no charge and continues its work to provide solutions and cures to families and their children. Your gift can help the dedicated team of researchers at the Center continue their efforts to find answers and develop treatments.