Raising a child with an undiagnosed or rare disease takes a lot of emotional energy, but you're not alone. As a parent of a child with an undiagnosed or rare disease, you know how isolating it can be. You may feel alone and not know who to turn to in your time of need. But, it's important to remember that you’re not alone, and some people understand what you're going through.
As a parent of a child with an undiagnosed or rare disease, you know how isolating it can be. You may feel alone and not know who to turn to in your time of need. But, it's important to remember that you’re not alone, and some people understand what you're going through.
It’s not unusual for parents who have children with undiagnosed or rare conditions to pour themselves into researching and talking with experts to try to help their children have the best possible life. But, unfortunately, all that effort to help your children can zap your energy and curtail other things in your life.
Raising a child with an undiagnosed or rare disease takes a lot of emotional energy. As a result, you may feel it’s hard to relate to others. Conversations are difficult because it’s hard to talk about your situation as a caregiver.
If you’re honest and share your struggles, it can be perceived as if you’re complaining and don’t love your child. So, you don a mask and pretend that everything is great because the last thing you want is further isolation due to the negative perceptions that tend to come when we are honest and vulnerable.
There’s no way to know exactly how life-altering raising a child with an undiagnosed or rare condition will be. You might experience various emotions, including denial, anxiety, depression, loneliness, and grief. Continue reading for ideas on how to combat those feelings.
Although it may seem like you’re adrift in the sea by yourself on a raft, you’re not. You may be surprised to learn that an estimated 30 million Americans have a rare disease. In addition, there are at least 7,000 identified rare diseases, defined in the US as a condition that affects fewer than 200,00 people nationwide.
Understandably, you feel alone and isolated. There’s a good chance that no one in your immediate circle is raising a child with an undiagnosed or rare condition, so it’s easy to feel that no one understands what you’re going through. Unfortunately, your experience is probably much more common than you realize.
You can find support groups online and in your local area. You can also reach out to your doctor or pediatrician, who may be able to provide you with a list of local support groups. Additionally, your child's school may have information on local parent-teacher organizations or other resources that can help you connect with other parents facing similar situations.
Start one yourself if you can’t locate any existing parents’ groups in your area! It is essential for parents who share similar experiences to know that they are not alone; by forming strong bonds with one another, these communities can offer tremendous assistance in coping with the unique challenges associated with raising children who suffer from undiagnosed or rare diseases.
Often when you find yourself in the midst of caring for a child with an undiagnosed or rare condition, it can feel like there isn’t a place where you belong. It seems that no one understands what it means to be part of this invisible community. There aren’t any events for families like yours, and even those who have been diagnosed with the same condition as your child doesn’t know how to relate to you because they've had vastly different experiences from yours.
It’s important to remember that everyone is more than their condition, and we all deserve to be seen as whole people — with hopes, dreams, and interests outside our diagnosis or condition.
Not making comparisons to other children is perhaps the most important tip of all, and it can be the most difficult one, but it can also be the most life-changing for you as a parent. Don't compare your child to other children with similar conditions, children with different conditions, or other children in general!
Of course, you love your child, but it’s tempting to feel envious that other children can do things your child might not be able to do. That can lead to jealousy or feelings of resentment, which aren’t healthy or helpful.
When much of your time is taken up with medical appointments, interventions, and trying to learn as much as possible about how to help your child, your availability to maintain social contacts is limited. You can’t go on as many social outings, meet at the park as often, or join in on a walk with your friends in the community — because your schedules revolve around all of these appointments.
In addition, finding a babysitter who’s comfortable caring for a child with an undiagnosed or rare condition can be challenging. For example, are they comfortable with the fact that your child may have a seizure? Can these care providers recognize when your child is overstimulated and about to have a meltdown if they don’t intervene?
Even though you’re also often exhausted, try to make time to stay in contact with friends to ensure that you don’t feel isolated from the outside world.
Don't rely on yourself alone to deal with the many issues and challenges that can arise as your child grows up with an undiagnosed or rare disease. Don’t be afraid to ask for help from family members, friends, and professionals willing to lend their assistance.
Isolation is real, and 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