Helping Kids Living With An Invisible Illness
In addition to managing their restricted diet and at times suffering serious pain and discomfort, children with Congenital Sucrase-Isomaltase Deficiency (CSID), resulting in Sucrose Intolerance, informally called “Sugar Intolerance,” may also feel stress and anxiety about coping with having their condition.
They don’t want to feel different from their friends, or be teased or, worse, have adults believe they’re just being difficult about eating.
You teach your child how to explain to others about the disease and how it is managed. But what about those you haven’t talked with yet, who may jump to conclusions and treat your child differently because they don’t know about your child’s CSID?
What makes CSID an invisible condition?
As with so many conditions, such as migraine headaches, heart disease, diabetes, osteoporosis (severe bone loss), and even cancer if your hair hasn’t fallen out, CSID doesn’t make you look different on the outside.
How your child acts in dealing with this condition may not make sense to others. When your kid’s Sugar Intolerance symptoms strike, those people may think they are seeing the behavior of a child who is a picky eater, or who is trying to get out of the classroom for yet another sudden run to the bathroom, or that your kid can’t be counted on when it comes to activities that have been planned.
How can I help my child with this challenge?
We asked Bradley Jerson, PhD, a pediatric psychologist who specializes in digestive diseases, hepatology, and nutrition at Connecticut Children’s Medical Center in Hartford, to explain what it’s like for kids to live with an invisible illness like CSID and how parents can help them meet the challenges and have happy, healthy lives. Read on for his insights and advice.
Do people typically underestimate the emotional toll a gastrointestinal (GI) disorder like CSID has on a kid?
Yes, so often. Because GI [stomach] conditions have no outward signs, even children’s family members may not fully understand the emotional toll they take.
The social stressors from peers can be enormous. We know that kids with chronic illnesses are more likely to be bullied. Nearly one-third of kids with food allergies are bullied because of their allergy.
What are the common misconceptions other people have that my kid with CSID may have to deal with?
Right off, the first assumption is that your child is an overly picky eater, an attention-seeker, or they’re trying to get out of things when they complain about physical symptoms.
Also, when kids with GI conditions need to use the bathroom frequently, it draws the unwanted attention of peers and teachers. Some kids use the bathroom as a way to escape class. Teachers know this, and so some of them insist on a waiting period after a request. For a child with CSID, the last thing they need is to be made to feel that they’re lying, which can trigger additional anxiety about needing to hold it or having an accident.
Fortunately, once teachers and school officials are educated about a child with a medical condition, they’re usually eager to help by making accommodations.
What emotions and behavior should I watch out for in my child?
Having a food intolerance and chronic GI condition can be frustrating because of the symptoms and the need for lifestyle changes to manage them.
Just getting a diagnosis of CSID can be very upsetting for them because they may feel that they are being labeled with something that sets them apart. Plus, no one can literally see their disease, so they may fear not being well understood, resulting in anger, sadness, jealousy, fear, or prolonged anxiety about being embarrassed.
But by teaching children some effective coping skills, you can help shift their perspective.
Depression and anxiety in children can be very subtle. You’re usually not going to have children express their worries in detail or ask to see a psychologist.
Kids instead typically show their feelings through their actions (increased anxiety about going to school, withdrawal from normal activities, isolation at home) and behavior (anger or irritability, trouble concentrating, difficulty sleeping, and reduced energy during the day).
Checking in with your child’s teacher or friends can add some additional perspective to what you, as parents, are seeing at home.
What can I do for my child if I see that she is suffering emotionally?
Trying to convince a child to stop feeling a certain way often has the opposite effect. It’s quite healing to allow kids to have the space to feel angry or sad or cranky.
One of the most powerful things you can say to a child dealing with a medical condition is, “It makes sense that you feel this way. You didn’t ask for this. I agree that it really stinks that you can’t just go out with your friends and eat without having to think about all of this.”
Parents can work on interpreting their child’s behavior without judging. And don’t worry, because when parents interpret incorrectly, their kids will be sure to tell them!
How can I help my younger child deal with mixed messages he gets?
Following a limited-sugar diet can be counter to so many of the messages kids hear on a daily basis.
For example, it can be very confusing when the “healthy snack” at preschool is an apple, and you have had it drummed into your head that apples are “bad for you.”
As a parent of a pre-school or school-age child, it’s important that you inform the daycare and school administrators to make sure they understand that healthy foods for others may not be appropriate for your youngster. And that your child is not being difficult.
How about my tween or teen who has CSID and desperately wants to fit in?
Younger kids tend to adjust better and stick with their treatment plans better than teens, who are more independent and don’t want to have to limit what they can and can’t do.
When they start pushing for more autonomy during their tween and teen years and spend more time with friends outside of school, having a food restriction makes life with peer pressure harder.
Few adolescents want to admit they have a food restriction when they go out to eat with their friends. They may choose to break their diet and deal with the consequences later, rather than explain why they can’t have a burger and fries like everyone else.
How can I help my child be confident in living with and managing their CSID?
Children are highly influenced by the coping styles of those around them, so when parents model confidence in problem solving in general and with managing CSID specifically, children can pick that up and learn to be more confident, more positive, and more resilient.
Planning ahead is imperative. Being resourceful and creative can make a real difference too.
I worked with a family whose daughter was heading to summer camp for the first time since she started her new restricted diet. She was most upset about not being able to get any snacks from the camp vending machine. So the parents called the camp and arranged for the machine to be stocked with treats that she’d be able to eat. This solution was something so simple, and it allowed her to feel like she was not going to be defined by her illness that summer.
As kids get older, and they understand their CSID, trusting them to take responsibility (with parents providing the safety net) is also key. You can also instill confidence by empowering your child to make smart food choices with you, not just by you.