Here are some tips for explaining diabetes to a child, including information on age appropriate discussions and questions your child may ask.
Your child has been diagnosed with diabetes. You might be asking yourself, how did this happen, what comes next, how do I best take care of my child?
You have lots of questions, and maybe lots of uncertainty. You may not understand diabetes yourself but are now faced with explaining the condition to your child.
The diagnosis can certainly feel overwhelming, especially in the beginning, but with proper care, people (including children) living with diabetes can live long, healthy, happy lives.
Before you discuss diabetes with your child, it is best to understand some of the basics.
Diabetes mellitus is the scientific name for diabetes and refers to a group of diseases that are related to how the body uses glucose. Beta cells in your pancreas sense glucose concentration in your blood, and when blood sugar rises after you eat, your beta cells release insulin. Insulin acts like a key, allowing your cells to use glucose for energy. If your pancreas doesn’t produce enough insulin to regulate the amount of glucose in your blood, the extra glucose builds up, and causes health problems.
Type 1 diabetes is an autoimmune disease. It happens when your body is no longer able to produce insulin because your immune system has attacked and destroyed the beta cells in the pancreas. No one knows why this happens, but scientists think it is caused by a combination of genetics and environmental factors. Type 1 diabetes is the most common form of diabetes diagnosed in children, and affects about one in 400 children, adolescents, and young adults under the age of 20. Although it is most commonly diagnosed in children, it is also diagnosed in adults of all ages. Type 1 diabetes is not curable, but it can be effectively managed through treatment with insulin every day.
Type 2 diabetes also causes a buildup of glucose in your blood. It is most commonly diagnosed in adults, but is becoming more common in children as well. In type 2 diabetes, your body produces insulin (at least a first), but doesn’t use it efficiently. Beta cells become exhausted from producing more and more insulin that the body is not using efficiently. Adjusting food choices and increasing movement can help treat type 2 diabetes. If diet and exercise aren’t enough, medication or insulin are needed.
Preparing For a Discussion About Diabetes
Your child probably has many of the same questions as you do, so it is important to be prepared before you discuss diabetes with your child. The more you know, the better prepared you will be to talk about it with your child.
So, where do you get the information you need? Of course, your health care provider is first on the list to help. There also are many resources available to you from support groups to blogs -- we’re proud to provide a wealth of guidance, tips, and how-to’s like How to Check Blood Sugar and How To Use Insulin Pen Needles right here on the Diathrive Blog, including plenty of pieces curated by Certified Diabetes Care and Education Specialists (CDCES) and other experts in diabetes, including people living with diabetes themselves.
Being prepared for the discussion also means being prepared for questions. Children are naturals at asking questions, so anticipate what they might ask.
You know your child best, but some questions you may be asked include:
Is it my fault I have diabetes? There is nothing you or your child could have done to cause or prevent type 1 diabetes, which is the most common form of diabetes in children. Type 2 diabetes is often associated with inactivity and weight gain, but there are strong genetic factors that come into play for type 2 diabetes.
Why did this happen? Without getting too complicated, the exact causes of both type 1 diabetes and even type 2 diabetes is generally unknown. The most important thing to stress is that it’s not their fault.
Am I the only one who has diabetes? Your child is not alone. In developed countries, type 1 diabetes is the most common life-threatening illness in children.
Am I going to die? This is perhaps the most heartbreaking question for a parent to hear. With proper treatment, people (including children) living with diabetes can live full, healthy, productive lives. Perhaps the most important thing for your child to know is they can still do and be anything they want: athletes, business men and women, community leaders, parents, or even a zoo keeper! The key is managing diabetes with the right self-care, and educating your child so they know how to take care of themselves.
When It's Time to Talk
When you are ready to discuss diabetes with your child, some guidelines to keep in mind include:
Consider your child’s age.
The peak age for diagnosis of type 1 diabetes in a child is 8 years old, although it can be diagnosed as early as 6 months. Make sure your discussion is age appropriate. Avoid complicated words and keep it simple. Let your child’s questions guide the conversation. As your child asks more questions, provide more detailed information. Support groups also are great for any age and help kids connect with others who have diabetes, helping them feel less different or isolated.
Always tell the truth.
Your child will live with diabetes their whole life, so education and truthful information are important because someday they will take charge of their own diabetes management. If you don’t know the answer to a question, empower your child to write it down and research the answer together. Confirm your new knowledge during your next visit to your health care provider.
Stay positive and keep an open dialog.
Understand that your child will have questions and concerns, just like you do. Start with the good news – that everything is going to be ok. It is important for your child to know that diabetes is manageable, and they can continue being a kid.
You might want to practice talking about diabetes with an adult family member or friend before you discuss diabetes with your child. If you are highly emotional about the diagnosis, seek advice on how to stay positive and upbeat.
It is natural to worry but try to keep your emotions calm and positive. Reinforce that together, you and your child can manage diabetes through medication, healthy eating, and regular exercise.
What about siblings?
Make sure your child’s siblings understand diabetes, too. They may feel left out or jealous because their sibling is getting a lot of attention. They might also be afraid of getting diabetes too.
You know your children best, so whether it is a group discussion with all of your children, or one-on-one with each child, take some time to talk with your other children. Soon, diabetes will be just a part of your normal lives, perhaps a bit different from other families, but a normal part of your lives, nonetheless.
Age-appropriate Ways to Let Your Child Engage With Their Diabetes
Infants and toddlers won’t understand why they need shots and their fingers poked. Make diabetes management part of your child’s normal routine, providing care in a gentle, soothing way. Make sure you’re always using fresh needles and lancets to make the pokes as painless as possible (reusing needles and lancets is not only unsafe but can make for more painful sticks because of dull tips).
Preschool children need their parents to manage their diabetes care, but letting them be involved in the “decision-making” can be huge for them. Ask them which finger to use to check blood sugar, and where they would like their insulin injection.
Elementary and middle school children should begin learning about diabetes care and taking on some of the tasks themselves. You will need to supervise, but allow your elementary or middle schooler to take on as much as they wish (with your guidance). Talk to your health care provider about what tasks are appropriate for your elementary or middle school child.
Elementary and middle school is also the time when your child may become sensitive to being “different” from other kids. Be prepared to encourage and praise them, reinforcing that they can do anything that kids without diabetes can do. If they want to take on more responsibility, allow them to do that (with your supervision), but also understand that they may have setbacks.
A great way to encourage your child to participate in their diabetes management is asking them to help plan meals. Give them choices and let them plan what they would like for breakfast, lunch, or dinner. An added bonus is you are teaching your child healthy eating habits that will be good for them their whole life, a skill they can teach their own families someday.
Elementary and middle school years also are a key time when your child is developing independence. Try not to be overprotective. Talk to our child about how taking responsibility for their diabetes makes it easier to do things like sleepovers and parties.
Teenagers are a challenge regardless of whether they have diabetes or not! Teens are seeking independence, and sometimes even more so for someone living with diabetes. They want to be just like their friends and can resent the fact that they are living with diabetes. This is an important time to maintain an open dialog (not lecturing) with your child.
Living with diabetes can be a challenge, and often more of a challenge for young people. Children and young adults may not fully understand what is happening. They can be scared, angry, confused, or uncooperative. They may feel different from their friends, feel as if they are being punished, go through some existentialism, have other tough feelings, or experience diabetes burnout or diabetes distress over time.
Parents can help by treating them as a normal child that manages diabetes as just one aspect of their life. There also are support groups, camps, and other organizations for children with diabetes. Your health care provider can offer suggestions for support.
You’ve got this!