My older brother Adam was diagnosed with Cystic Fibrosis – a chronic genetic disease that affects the lungs and digestive system – when he was a toddler. I don’t remember it because I was a newborn at the time, but my mom always likes to joke about how, when they got his diagnosis, she looked at me as I laid in my car seat and said “Sorry, Kate, but you just got put on the backburner.”
I always laugh when she tells this story, but only in the polite, avoiding-a-bigger-discussion kind of way. Full disclosure: my parents never acted like Adam was more special than me just because he was sick, and I always felt just as much love from them as he did.
Despite this, there is a very real What about me? effect on siblings of chronically ill children that can do a lot more damage than many people realize. It’s important for parents to be just as aware of the side effects a child’s illness can have on their sibling, as it does on them.
It’s important for parents to be just as aware of the side effects a child’s illness can have on their sibling as it does on them.
Siblings of children with chronic illness are at a far greater risk for developing severe anxiety and chronic stress. It’s also common for a sibling’s self-esteem to plummet, and they could unintentionally start to see themselves as nothing more than the “other child,” which commonly leads to more serious emotional disorders. While one child may need special medical treatment, the other likely needs additional emotional support.
When parents have a child who requires above average attention, it’s natural for siblings to be expected to “fend for themselves” while parents tend to the sick child.
“In some cases, siblings experience parentification where they are expected to have many responsibilities for themselves,” says associate professor of psychology at Ariel University in Israel, Dr. Avidan Milevsky in a Psychology Today article. “This responsibility may seem positive to parents but may actually be precursors to emotional distress.”
Whenever my brother did his breathing treatments, I had to leave the room so I wouldn’t inhale any of the medicine from his nebulizer. I usually spent that time playing alone in my room. It was only a half hour a night. But still, the association started to build somewhere in my brain, and after an entire childhood of sitting alone in my room every night while Adam got to watch TV, being alone is just where I seemed to belong.
He once told me “As your older brother, I’ve never felt like I needed to worry about you.” I love that he sees me this way. I’m very proud of how independent and self-sufficient I am, and as a younger sister, I always stand a little taller knowing I’ve never needed big bro to save the day. The paradox here is that I am only as independent as I am, because his illness forced me to learn how to love being by myself.
According to clinical psychologist Dr. Emily Incledon, lead author of a review of mental health issues in siblings of children with chronic illness, honesty is always the best policy. It’s important to include your healthy child in family discussions about why things are the way they are.
It’s important to include your healthy child in family discussions about why things are the way they are.
“If information is being kept from them, they may become more worried, using their imaginations to create [worse] scenarios,” Dr. Incledon said.
My brother almost died when he was in third grade. He had been part of a clinical trial to measure how massive doses of Ibuprofen affect CF symptoms. My parents tried to put him to bed early one night because he had been complaining of a stomach ache. By the time they got him all ready for bed, he was dripping sweat and screaming “Please, help me” over and over again.
I sat on the stairs and did nothing, because I was six. My dad closed Adam’s bedroom door so I wouldn’t be scared. But my fear didn’t come from what I saw, it came from what no one would tell me, even after he was fine and released from surgery a week later.
Hiding scary things from children is a natural reflex I would argue all good parents have. I would never judge a parent whose knee-jerk reaction was to protect their child from all the bad things in the world. But there comes a point when things have settled down and you need to re-open the door that was closed, and include your child in what’s happening to the whole family. While it may seem like they’re doing well and don’t need to talk to you about it, that’s often not the case.
While it may seem like they’re doing well and don’t need to talk to you about it, that’s often not the case.
In a study conducted by Lancester University in the UK, a large portion of the parents involved with the study said their healthy children were coping extremely well under the circumstances. According to the lead study author, Antoinette Deavin, that was not actually the case.
“In order for healthy siblings to get their emotional needs met, they adapted their behavior and identity over time to fit with the needs of the family,” Deavin said. “This can cause them to be seen by the adults in their lives as functioning well and consequently be overlooked, whilst still experiencing distress.”
Raising multiple children is difficult enough without needing to pay special attention to one of them. There is no secret code you can use to learn how to approach the situation. But understanding that it’s your job to initiate the necessary communication, and know when to get additional help, is a good first step.★
Kathryn Brostowitz is on a hiatus from nannying to work as a copywriter in Milwaukee. She misses every one of the kids she’s ever cared for a crazy amount & still talks about them to everyone who will listen. You can read her work in The Tavern Lantern.