It’s important to remember there’s no “right” or “wrong” way to respond. Instead, give yourself time to process the news, and be kind to yourself as you adjust to your new situation.
Learning that your child has an undiagnosed or rare condition can be overwhelming. Your world is quickly turned upside down. Suddenly, your future looks completely different than it did even a day earlier. It’s an enormous change impacting your child and family.
You may experience waves of complex emotions — from fear and worry to profound sadness, despair, and grief. Or, you may just feel numb, frozen by shock, or the feeling that you’ll never be able to cope. The emotional upheaval can make it challenging to function or think straight and even lead to mood disorders such as anxiety and depression.
It’s important to remember there’s no “right” or “wrong” way to respond. We’re all different, so don’t tell yourself what you should think, feel, or do after learning your child has an undiagnosed or rare condition. Instead, give yourself time to process the news, and be kind to yourself as you adjust to your new situation.
Figuring Out How To Live With the Challenges and Struggles is Difficult
Figuring out how to live life with the challenges and struggles that come with your new normal is difficult but doable. It takes time for everyone involved — from doctors to family members — to adjust to the new normal after learning of your child’s condition. And, it’s okay if everything doesn’t immediately fall into place, even if you’re fortunate enough to receive a diagnosis.
It's also okay if you feel like you have too much on your plate. You don't have to be everything for everyone all of the time. If you're feeling overwhelmed, don't try to do it alone! Reach out for help from family members or friends who can lend a hand with caring for other siblings or even dog walking duties so you can focus on taking care of yourself and your child(ren).
It Takes Time To Readjust to a New Normal
You may be in denial, upset, or angry that this is happening to your child. Maybe you feel guilty about what happened because of something you did or didn’t do in the past. Perhaps you are scared that things will never be normal again. Or maybe all these feelings are combined into one big overwhelming mess inside you.
In addition to feeling overwhelmed and many other emotions, you must adjust your expectations. You must come to terms with the fact that things you dreamed about doing with your child might not be possible due to their condition.
Whatever you are feeling right now, here is the truth: It takes time to readjust to a new normal after learning that your child has an undiagnosed or rare condition.
It's Important To Know You're Not Alone
One of the most helpful things you can do for yourself is to find support. Many other parents are in your position, and it's important to know you're not alone. You have options for finding help and support, including:
It's Okay If You Don’t Have Everything Figured Out Immediately
Sit back and take a deep breath. It's important to allow yourself time to process the situation. While many feelings of fear, confusion, and sadness come with an undiagnosed or rare condition diagnosis for your child, your situation is unique. It will take time to sort through your feelings and situation. You can only do your best to handle things the best way possible.
It's Okay To Want a Break
Don’t be hard on yourself for feeling like you want a break. It’s normal to feel that way. You can’t be involved in every single thing your child does. When your child has an undiagnosed or rare disease, sometimes taking breaks from the caregiving responsibilities helps everyone stay sane.
Don't Forget About Yourself
Naturally, your child is the focus of your life, but it's important not to forget about yourself. Self-care is vital for you and your family. Your loved ones are there to support and help you. Let them. When you're at the end of your rope, ask for help. If that means taking a break from all things related to your child’s condition, then do it! And don't worry about what people think — the only opinion that matters is yours.
Support and Hope
When your child has an undiagnosed or rare condition, your life rapidly becomes unrecognizable. Finding your new normal can be a long and bumpy road, but don’t give up!
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.