When a parent learns a child has a rare disease, life changes in an instant. Priorities shift and moms and dads often focus on learning all they can and making sure the child has the best care possible. As parents are overwhelmed, siblings feel the effects when daily life changes and family stress increases.
It’s understandable that parents would give more time and attention to a child who needs frequent doctor visits, hospital stays and complicated medical care. Some experts say their siblings can become “shadow patients,” meaning they feel the negative effects of an illness even though they personally don’t have it.
Dealing with a rare disease diagnosis is “something the sibling is feeling and experiencing in a very real way, no more or less than the patients or the parents,” Samantha Childs, a Certified Child Life Specialist and founder of Kids Cope Baltimore, said at a recent virtual event hosted by the Immune Deficiency Foundation.
Kids Cope Baltimore is a counseling service that focuses on families dealing with rare disease diagnoses. Profound stress and uncertainty can have real impacts on siblings’ mental health, studies have found. A 2013 study of siblings of cancer patients found that 60 percent scored in the moderate to severe range for post-traumatic stress. It also showed that disorders like anxiety and depression were more common among this group. Other studies have found that siblings of rare disease patients could experience psychosocial issues and poorer mental health overall.
Explain What's Happening
Moms and dads need to meet kids where they are and give information appropriate to their developmental age and stage. The first thing to realize, Childs says, is that a rare disease diagnosis looks very different to a child than it does to an adult.
Parents and caregivers may receive lots of information about the condition, and have the chance to speak directly with doctors and specialists. Meanwhile, siblings are at home, and they get most of their information second-hand (if at all, depending on how well their parents keep them informed). This leaves space for imaginations to run wild.
“They’re trying to fill in the gaps of information they have versus what they don’t really understand,” Childs said. ”Oftentimes that can be a lot scarier than what’s really happening.”
That’s something research backs up as well. A 2015 paper on siblings of rare disease patients, titled in part, “She Came Out of Mum’s Tummy the Wrong Way,” found that many kids had misconceptions or uncertainties about their sibling’s disease. They lacked information about the condition and had difficulties understanding complex medical concepts, which are challenging even for adults to grasp.
The sense of confusion and isolation can lead siblings to act out in a number of ways, according to Childs. Younger children may become fussy or clingy, or temporarily lose skills they had gained. Older children may seem withdrawn or frustrated. Teenagers, who might be called upon to help out siblings, might feel resentful as if their own personal development is getting short shrift.
On the positive side, kids who are asked to step up in this way can become more responsible and compassionate as a result, Childs said. But that’s more likely to happen, she says, when kids “feel empowered and supported, rather than demanded to group and develop new skills.”
Four Ways to Help Siblings Cope
What can parents do to help siblings cope? Here’s what Childs suggests:
1. Build their knowledge.
It’s always hard to feel left in the dark. Use age-appropriate language to keep children up to date on what’s going on, Childs said. Even young ones need to know what’s going on with their brother or sister. That’s especially true when the information might seem frightening.
“A lot of caregivers have the instinct to protect siblings from potentially scary information or these adult concepts,” she said. But that often leads to distrust.
“It’s important to remember that giving information is helpful and beneficial and gives a sense of security,” Childs says.
2. Keep connecting.
Find times to connect with your children who are well. Make physical and emotional contact. It could be a daily video call, nightly story time, weekly playdate or other special time together. Intentional time with siblings will help them feel valued and recognized, even as other responsibilities might pull you away.
3. Stay consistent.
Regular routines help promote a sense of normalcy for kids, even when other things might be less than normal. Regular mealtimes, bedtimes and more give a much-needed sense of structure. You might not be able to accomplish this all the time, but when you can keep to a routine, it helps everyone.
“Promoting that consistency whenever and wherever possible is really, really important,” Childs said.
4. Let communication go both ways.
Keeping your child in the loop is one part of the communication puzzle. But simply ensuring that your child knows you’re always there to talk to is its own kind of reassurance.
Schedule times to talk with siblings and keep to them. Children need to know you’re available to listen to their thoughts and questions, Childs said.
“The biggest part of communication is sharing your own feelings,” she said. “Telling your child when you're feeling sad or you’re feeling angry shows that it’s OK to feel that way, and that will help promote them to express those emotions as well.”
And make sure kids know that it’s OK to have negative feelings about the situation. It doesn’t help to tell a sibling “A good person wouldn’t say that,” or “You should be grateful it didn’t happen to you.” Instead, encourage kids to share their feelings, whatever they are, so they feel validated and know that you’re listening.
