Not having a clear diagnosis – or having a child with a rare condition – sets you apart from a lot of the other parents of children with disabilities or special health care needs. You spend some days hopeful: maybe a test result will come back with “the answer.” You might spend other days feeling like you have to start all over again. And you are left dreaming of the day you will get a diagnosis.
A diagnosis is not simple if your child has a rare condition, symptoms that match multiple conditions, or symptoms that don’t really fit into a single category. This is a journey with multiple stops. You might wait a long time for one diagnosis or even get many along the way.
The need for a name to put around your child’s symptoms is important. It helps you access services. It helps you connect with other parents who are in similar situations. It helps you learn what you can do to support your child for the best possible life. The good news is that you are not alone: parents struggling with similar issues have formed support networks. New conditions are identified every day; one of those might help doctors reach a diagnosis for your child.
We’ve gathered these tips and pointers from parents who have children with no diagnosis, a rare diagnosis, or multiple conditions. We hope they will help you on your journey.
“Don’t panic. You work through it, no matter how overwhelming things might seem.”
“This is not your fault. Breathe.”
“Read everything you can. Knowledge is power.”
“The hardest thing to accept is that you are the expert when it comes to knowing your child.”
“There is always hope to be found.”
“The pain dissipates as your child becomes happy, smiles, and has friends. The pain does ease.”
When connecting with a parent group, you might want to find other parents whose children have similar symptoms or conditions to yours. You can look on our Connecting With Other Parents page for a broad list, but here are a few that have services specifically for families with children who have no diagnosis, multiple diagnoses, or a rare condition: