Dealing with
Diabetes
By Robert Beilke, PhD
Tammy McKay, MA, LMFT
Pediatric Psychology Service
multicare.org
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INTRODUCTION
Diabetes! You probably didn’t think this would
happen to you. You may have many different
feelings or just be in shock and feel nothing.
There is no right or wrong way to feel about
having diabetes. For now, try to relax and
believe you will feel better. Below are some
things to remember in the next few days.
Relax: While diabetes is a serious medical condition, it is very treatable and you will
feel better. Diabetes care has improved greatly in recent years. Our understanding of
diabetes has increased and technology has improved diabetes care. You will get better, feel better and taking care of your diabetes will get easier.
Don’t blame yourself: Sometimes people blame themselves for getting diabetes and
wonder what they did or did not do to cause this. With type I diabetes there is nothing
you did or did not do to cause this. It just happened. It is not fair and we all wish it did
not happen, but it did. Your parents may feel guilty and think they should have figured
out you had diabetes. These feelings are not helpful for you or your parents. Remember the early symptoms of diabetes can be interpreted as something else, for example,
the stomach flu or some other illness.
Accept your feelings: The feelings you have are real and a normal reaction to having
something you do not want. Accepting your feelings or having parents who can accept
and understand your feelings helps you begin to adjust to having diabetes. The tricky
thing is to accept your feelings while not using them as an excuse to be upset or mean
to others or ignore what you need to do. Sometimes it is good to think about areas of
hope in your life. For example, think about the good things in your life and remember
that your life still goes on. With diabetes you can still do everything you’ve done before—it’s just now you’ll check your blood sugar, count your carbs, and take insulin.
Take some first steps: After being diagnosed with diabetes, it is important to have
some immediate goals. These include 1) Begin to allow it to sink in that you have diabetes, 2) Try your best to do all the new things you have to do like finger pokes, counting how many carbohydrates you eat, and taking insulin shots, and 3) Learn everything
you can about diabetes. You will receive a number of resouces in the hospital and in
the future may wish to do more research online. We recommend - JDRF.org.
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Trust in your Diabetes Team: The doctors,
educators, nutritionists, and mental health
professionals are there to help you. We all have
a lot of good information. Your head will spin
with all the new things you’ll learn. Try not to
get overwhelmed. No question is too stupid
and no question can be asked too many times.
You will probably forget some things you learn
at first. This is okay, just write your questions
down and ask them later. No one will think less of you for doing this.
Some people will try to be helpful but will give you information that is upsetting or
different than what you learned in the hospital. For example, some people will confuse
type I and type II diabetes. They may blame you for having diabetes, saying you ate
or drank too many sweets or are over-weight. Remember, with type I diabetes there
is nothing you did or did not do to cause this. Also, some people may tell you disaster
stories about other people with diabetes. Typically, these are stories from long ago or
about people who have not taken care of themselves. Remember, our understanding
of diabetes has increased and technology has improved diabetes care.
Be prepared for ups and downs: The first few days in the hospital after diagnosis
may be difficult. When you first heard the diagnosis you may have been in shock.
You also may have felt angry, upset, sad or afraid. Even with all these different feelings, children and families begin to take care of the diabetes by checking their blood
sugar and giving shots. They also learn everything they can about diabetes and tell
themselves, “We can do this.” After a day or two they begin to feel overwhelmed.
More tears and upset feelings may come. After education, practice and feeling better,
things tend to get easier.
Deal with the many changes: Part of adjusting to diabetes is remembering you
have to deal with many changes and new things all at once. This overwhelms people.
Like learning any new skill, we feel uncomfortable or overwhelmed at first but it gets
easier and better the more we do it. It seems like a lot right now, but it does get better
and there are others around to help you. We often tell families and children there
is nothing too complicated, too painful or too time-consuming about diabetes. The
hardest challenge is dealing with it day in and day out. It is the hassle of it. The best
way to deal with diabetes is to make it a part of your routine, allow others to help, and
remember taking care of yourself makes everything else in your life better.
In this booklet you’ll learn a lot about taking care of yourself and how to deal with
diabetes. We hope the things we talk about will help you be the best you can possibly
be with diabetes.
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DIABETES IS A “FAMILY AFFAIR”
Parents and family members can assist
their child in making a positive adjustment
to diabetes by acting as if the whole family
has diabetes. Children are most successful
managing diabetes when all family members
know their care needs, are eating the same
foods and have similar meal time schedules.
Children with diabetes and their families are encouraged to eat a healthy and well
balanced diet. Families will learn to choose foods from all the food groups and
manage portions. This is important because it is very difficult to feel like the only
one at home who must sacrifice or go without. There is no reason for families to
start preparing separate meals for their child with diabetes. In general, there is no
need to start purchasing “special” foods. If your child must eat three meals a day
plus snacks and no grazing throughout the day, then the whole family will begin
to eat on the same schedule. There is a sense of value and validation when other
family members conform to the child’s needs.
If you have a “picky eater” or a child who doesn’t eat breakfast, the clinic staff and
dietician will be very helpful in working with you and your child on these food issues. Try to provide a variety of foods. The initial diagnosis of diabetes may present
an opportunity to introduce new foods. If your child must drink diet drinks, then the
whole family has diet drinks. Try to think in terms of balance and moderation.
If your child is not already involved in daily physical
activity, this may present another opportunity for families to find ways to be active together. Families may
walk, ride bikes, swim, hike or participate in organized
sports. Regular physical activity is a very important
part of an overall lifestyle that promotes good health.
Your child has diabetes and life goes on.
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Maintain a calm, matter-of-fact presentation
in front of your child
Parents often find it more difficult to cope with
the news of this new diagnosis than their children
do.
This is especially true when children are diagnosed at a younger age. It is helpful if parents
encourage or are at least neutral when discussing diabetes with their child. They may need
time privately, away from their child to “fall apart.” All children, especially younger
children, take their lead from their parents; if parents are calm and confident the
child’s anxiety is minimized. Parents may experience many negative emotions
associated with the diagnosis of diabetes. They may initially experience shock and
then sadness, grief, loss and perhaps fear for their child having a life-long medical
condition. Having a calm presentation in front of your child may seem very unnatural. However, it is distressing for a child to see parents crying and upset when
the child may already be frightened by their diagnosis and circumstances.
Your son or daughter will naturally look to you for comfort, support and reassurance. When parents remain calm and avoid being over-protective, it is easier for
their child to make a positive adjustment. Parents can also discourage other family
members and visitors from displaying strong negative emotions or expressing
how sorry they are for your child’s diagnosis. Your child does not benefit from
hearing how negatively others view his or her situation. Rather, family and friends
can offer your child reassurance and a positive outlook. We all wish children did
not have to deal with a life-long medical condition. However, since they do, family
and friends are going to work together to support and encourage the child to lead
a full, active and healthy life. Many families tell us this is just the motivation they
needed for everyone to work toward a positive and healthy lifestyle.
There is a temptation at diagnosis to feel sorry for the child; friends and family
members may shower them with gifts and promises of future “treats.”
It will be important to return to a more normal and sustainable routine as soon
as possible. Parents may be tempted to eliminate chores or decrease other
expectations for their son or daughter. Children learn responsibility and gain
self-confidence as well as positive self-esteem from completing tasks such as
diabetes care, chores or school work. Removing tasks, offering extra privileges,
or preventing your child from doing the things they did prior to having diabetes
creates dependence, increases anxiety, and gives the child a message that
diabetes must truly be terrible. Having diabetes needs to become a routine part
of the child’s and family’s life. Children with diabetes can continue to participate in
sports and clubs. They can still spend the night with grandparents, their friends,
and can even go to camp!
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HAVE REASONABLE GOALS
It is important to have reasonable goals
that you can obtain, such as checking your
blood sugar and giving yourself insulin.
For Kids
These are goals you can control. People become
less discouraged and feel more successful when
they reach their goals. Sometimes kids and
families become discouraged with diabetes care because they have unreasonable goals such as having blood sugar readings between 70-150 every time they
check. Blood sugar goes up and down. This is very important to remember because “life happens.” Numbers may not always be perfect; people are not perfect.
Sometimes you can do everything right and still have blood sugar numbers that
are high or low. You may like it to be within the target range all the time but that is
unreasonable to expect. This is why you learned how to handle a high or low blood
sugar. We know it is going to happen. What is most important is that you follow
through with what you have learned. That is, check your blood sugar, don’t panic if
it is high or low, and give yourself a fast-acting carb when your blood sugar is low
and insulin when your blood sugar is high. These are goals you can control. Remember, we expect your blood sugar to go up and down. Realistic goals for yourself include checking your blood sugar and giving yourself insulin when needed.
Another thing that is discouraging to kids and families is that sometimes it is hard
to bring down a high blood sugar number. After trying all day to bring down a
number and seeing high blood sugar numbers over and over, some kids don’t
want to check their blood sugar again. Seeing another high number only makes
them feel like a failure, like they are not good at taking care of their diabetes. Some
kids will even become afraid of seeing what number their meter shows. We say
the meter is just a signal, it shows you what to do next; it’s a piece of information.
Whether high or low, you have a plan for what to do next. Remember what we just
said? Don’t panic if it’s high or low and give yourself a fast-acting carb when your
blood sugar is low and insulin when your blood sugar is high.
Try to keep from feeling bad about yourself because of your blood sugar numbers.
Instead, remind yourself we expect blood sugar numbers to go up and down. What
is most important is that you know what to do when that happens. Remember, the
number on your meter is not your grade in diabetes care or your diabetes report
card. By keeping these things in mind, you won’t become discouraged or want to
stop testing your blood sugar. And, if you get off track with your blood sugar numbers, then get back on track by testing and taking insulin when needed.
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For Families
In some families, there may be a lot of upset or fearful feelings when there is a
high or low number. Parents may act angry at their child or blame him or her for
the number. It is hard not to panic when blood sugar numbers are not where they
should be even though staying calm is really important. After seeing their parent
become angry over the blood sugar number, some kids decide they are not going to check their blood sugar or they will lie about the number.
Everyone at home will feel better when mom or dad responds to blood sugar
numbers, especially the highs and lows, without anger, fear or disappointment.
Also, once in a while parents should check the meter just to make sure the child
is reporting accurately his or her blood sugar numbers.
DEALING WITH IT
All children are different. Some take care
of their diabetes with no problems.
Others find it really hard. For the kids who
struggle with taking care of their diabetes,
extra help may be required. You may wish
to ask your family and friends to help you
with some of your care. Here are some
ideas.
You have choices
Some kids feel like diabetes controls them. We want you to feel like you control
your diabetes. So, if your mom or dad says, “Dinner’s almost ready,” do you have
to test your blood sugar that moment? No, you can finish what you are doing as
long as you take it before you eat. You have some choices. You can also choose
which finger to poke or where to give the injection. You can choose a comfortable place in your home where you’ll test your blood sugar. You can choose if
you want your mom or dad or someone else to help you, if you look or don’t look
or if you like to count down before you test your blood sugar or give an injection.
Choices help you feel like you have control over your diabetes. We don’t want you
to think you have a choice whether or not to test your blood sugar or take insulin.
These things you need to do to stay healthy. But, you have other choices to make
these things easier. Your parents may offer you a choice and if you don’t choose,
your parent will choose. It is important to keep moving and not delay the inevitable because taking too long to choose only allows your fear to grow.
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Distract yourself
Diabetes care may be frightening to some. If you
are afraid of finger pokes or shots, then paying
really close attention to these sometimes makes
it worse. Did you know there is a lot of scientific
research that shows the more we pay attention to
our bodies, the more pain we feel? It’s true! Have
you ever cut yourself but you did not know you cut
yourself until you looked down and saw the blood?
Once you saw the blood, then it started to hurt. But, before you saw the blood,
you really didn’t feel the pain. How does that work? Well, when we pay really close
attention to a cut, sore, finger poke, or shot, we make the pain signal stronger.
And, taking our mind off of things like finger pokes or shots helps the pain not be
so bad. Some kids like to watch television, talk to someone, look away, listen to
music, or play a video game. It may sound silly but it really works! Distractions can
help at any age.
Relax yourself
Relaxation also works like distraction and makes our pain less. But, it can be hard
to relax when you are really scared. That is why it is important to practice relaxing
when you are not in a scary situation. That means practice relaxation when you
don’t have to do finger pokes or shots. Some kids like to take several slow and
deep breaths. Others like to have a massage, relax their muscles or stretch their
body. If you want to take some slow and deep breaths, you might want to pretend
you’re blowing out birthday candles or blowing bubbles. Older kids may stand in
front of their bathroom mirror and imagine they are breathing all the way down to
their toes. If you can breathe so that your tummy pops out and your chest doesn’t
move, then you are really taking a deep breath. You may want to ask someone in
your family to help you relax when you have a finger poke or shot by coaching you
with your breathing.
Boost your confidence by telling yourself something positive
This may also seem silly but when we tell ourselves positive things, we handle
things better. Some examples of positive things to think or tell yourself are, “I can
do this” or “It only hurts a little bit and then the pain goes away” or “I don’t like it
but it’s really not that bad and besides, I’m brave and can handle it” or “I am really
scared but it only hurts for a little while and my parents will help me get through
this.” You need to pick something to say to yourself that helps you. You may
choose one of these statements or make one of your own. If you focus upon getting diabetes care done and being brave, then it will be easier for you. But if you
tell yourself diabetes is terrible and the shot is really painful, you will have more
problems and pain with diabetes care. So build up your bravery by telling yourself
something positive about how you’re dealing with diabetes.
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Get comfortable doing what is uncomfortable
It may feel like you have many new things to do.
Some of them may be harder than others. There are
pokes, shots, counting carbs, checking for ketones,
eating a healthy and balanced diet, and trying to eat
at regular times. Some kids do better at counting
carbs and figuring out how much insulin to take than
others. Some kids don’t like to eat vegetables while
others love them. Also, some children and parents are afraid of needles while others are not. Those that are afraid may struggle with the finger pokes, injections or
both. Sometimes our fears or our habits get in the way of taking really good care
of our bodies. The more you practice doing something you do not like or are even
afraid to do, the better you will get at it. You may feel very frightened at first but
after doing it many times, it is not as frightening.
For example, maybe you want to take all your shots in the same place, such as
your tummy. You tell yourself that it will really hurt to take a shot in your thighs and
become afraid to take a shot there. It is important to practice injections in all sites
(both arms, both legs, tummy) so you will be comfortable rotating injection sites.
Remember to relax, distract yourself, and build up your bravery by saying
something positive about yourself.
Avoid power struggles
As kids grow older, they may not like their parents
telling them what to do so much. No one likes to be
nagged and sometimes your parents’ reminders feel
like your parents are nagging you. But parents worry
about their kids and some parents are afraid if they do
not remind their child to take care of his or her
diabetes, it would not get done. Taking care of diabetes
is like having to deal with your homework or household chores. A child who needs
reminders to do chores often needs reminders to complete diabetes care.
Several suggestions can make home less stressful when it comes to diabetes
care. First, remember you have choices when it comes to caring for your diabetes.
Second, rather than your parents asking what your blood sugar is, your mom or
dad can just check your meter. Third, your dad or mom may remind you without
using words. Instead of telling you to check your blood sugar, mom or dad may
simply put your meter on your lap or place it on your dinner plate before dinner.
You’ll know what to do and won’t feel nagged about doing it.
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Fourth, if a child delays too long in testing or injecting, some parents may stand
silently next to the child without saying a word until the child has tested his or her
blood sugar and taken their insulin. This way, the parent avoids nagging and takes
silent action. Fifth, a parent may encourage a child to be more responsible by setting up simple routines. For example, “I will serve dinner once your blood sugar is
checked.” Or, “When you take your insulin, then you can play.”
Ask for help
There is a lot to do when it comes to diabetes. Remember what was said before about
getting comfortable doing what is uncomfortable? It may not be easy at first. But by
doing your care over and over again and by
using the ideas we talked about for dealing
with diabetes, it get easier. It may be hard to
believe right now, but other kids just like you
have said, the more they took care of their
diabetes, the easier it became. There isn’t anything about diabetes care that is too
complicated, too painful or takes too long. The hardest part may be never having
a break from diabetes. It is with you all the time. Every day you must take time to
test your blood sugar, think about what you ate, count the carbs, and take insulin.
Some days this will feel like a lot. That is why support from your family and other
important people in your life helps. These people will become your diabetes team.
Think of people who can help you remember to take care of your diabetes, understand when things get tough in your life, and help you feel better when things are
hard. Family, friends, teachers, coaches, counselors, and others may all be on your
team.
Sometimes your family may not know how difficult it is for you and that is why it is
important for you to tell your family when you’re feeling down or upset or stressed
out about taking care of your diabetes. Telling your diabetes doctor or nurse will be
helpful too.
Psychologists or counselors can also help kids and families deal with diabetes or
the feelings kids have about diabetes. Some kids and families argue and fight over
diabetes. Other kids get sad or grumpy even when their blood sugars are good.
Still other kids begin to lose interest in things and nothing is fun for them anymore. Sometimes it is helpful to talk with someone else about what it is like having
diabetes. This can help you and your family do a better job of taking care of your
diabetes. In this way, we think of a counselor or Psychologist as a kind of coach.
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COPING
The following guidelines may be appropriate
at any age. Some children will be ready for
information sooner than suggested here, and
some children may not be ready as soon. This
depends on their developmental level and age
at diagnosis.
Infants and Toddlers
 Be well organized, work fast, create a distraction, and move on quickly.
 Predictability is key; have a routine with consistent times and plan a
desirable activity when you are done with care.
Pre-K to Kindergarten
 Be well organized and stick to a routine. Have all materials ready and
identify a safe and comfortable place to provide care.
 Offer simple choices. If decisions are not made quickly, a parent decides
and the child may decide next time. Avoid power-struggles by giving
choices. For example, “It is time for your insulin, which leg would you like
me to use?”
 Identify good diversions for children who are anxious or fearful; let them
sit on your lap, watch a cartoon, practice slow-deep breathing.
 Use medical toys for play; this can help children become familiar with the
“tools” of their care and provides an opportunity for mastery through play.
 Provide specific and meaningful positive feedback and use consistent
language for describing your child’s care. For example, “Thank you for
holding your arm so still. That was very helpful!”
 Move on quickly to a desirable activity.
Elementary School
 Be well organized and encourage your child to help develop a good routine
for care. Children at this age will be doing care at home and school and
perhaps in other settings as well. Encourage your child to participate in
making care decisions if they are ready and able to do so.
 Offer choices and move quickly to complete care tasks. Avoid power struggles.
 Help your child identify a good diversion if they are anxious or fearful.
Some children may work on self-talk and other simple forms of relaxation.
 Some children in this age group will want to take over part of their care.
Parents may offer support, encouragement and reassurance.
 Children in this age group are likely to be talking to their friends about
their diabetes care and may find varying levels of support.
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Elementary School (Cont.)
 It is important for them not to feel like they
are being treated differently. Children in
this age group will be ready to start
learning basic information about their
diabetes and care.
Middle School
 Parents are transitioning more care to
their child during this period. However,
these kids still need some level of parental
monitoring to ensure their care stays on
track.
 Some kids may be tempted to skip care when tired or busy and parents
may be tempted to “nag.” This is the time to work on strategies to decrease
the need for nagging. Remember the non-verbal reminders we discussed
previously.
 Kids are starting to spend more time away from parents; are they organized
and prepared to manage their diabetes?
 This may be a good time for kids to start meeting other kids with diabetes.
 Demonstrating responsibility in this and other areas of their life is a good
way to earn privileges.
 At this age, it is time to teach kids a more advanced understanding of
diabetes and increase their contact with their diabetes care providers
in clinic.
High School
 Teens should be managing most of their own care with some parental
support.
 If you haven’t already, it’s time to discuss the special dangers of drugs
and alcohol for people with diabetes.
 Teens may be curious about pregnancy and diabetes.
 Help teens predict situations which could lead to problems such as being
prepared when out with friends, away for sports events or traveling without
a parent.
* Again, demonstrating responsibility in this and other areas of their life is
a good way to earn privileges. This is especially important when teens
begin to drive. It is important to have a safe blood sugar level when driving.
 Teens may be interested in using “technology” to help themselves manage
their diabetes. They may use cell phone alarms for reminders, computer
apps for calculating carbs, etc.
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QUESTIONS I NEED TO ASK
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The authors wish to thank their colleagues in the Pediatric
Psychology Department, the Diabetes Clinic team and the many
patients and families who have contributed to this booklet.
TA C O M A ~ A U B U R N ~ C O V I N G T O N ~ G I G H A R B O R
O LY M P I A ~ P U YA L L U P ~ S I LV E R D A L E
January 2012