Help Your Child Cope With Resentment Toward Diabetes
Anger : Get It Out & Get Back to Your Life 13 Ways to Help Your Child Cope with Resentment at Diabetes
Michelle MacPhee, D-Mom, M.S. (Applied Psychology)
Whether you’re the one living with type 1, or you’re a parent of a child or teen with diabetes, anger is a natural emotion in response to the unrelenting demands of diabetes and the unfairness of it all. As a mom of an 11-year old with T1D, I have seen him mad that he has to check his blood sugar, mad that he has to wait until his glucose drops before he can eat dessert, mad that the choice between injections and pump insertions is not really a choice at all – one or the other is necessary because of this diabetes that he didn’t choose.
I’ve also been mad many times in almost 10 years of living with the diabetes dragon. When I’ve been up most of the night babysitting low blood sugar. When our son’s BG remains high despite repeated correction doses of insulin. (Rage bolus, anyone?) When I had a hungry, crying toddler and I couldn’t feed him until I counted the carbs and calculated the insulin dose, and I thought of all the other moms I knew who didn’t have to do that. When I see our son feeling the pain of a diabetes task, and I think “It’s not fair!” These are some of the times that I get mad. Really mad.
Anger is actually a reasonable response to an unfair situation, a healthy emotion if it's expressed in positive ways. But if you keep it bottled up, the pressure builds. Like Mentos in a Coke bottle.
So how can we express our anger, and so free ourselves to move on? How can we teach our kids to do the same? To help you generate strategies to fit your child’s age, abilities and personality… here are some suggestions:
1. Smash Something!
This one is our family’s personal favourite. There is something so freeing about destroying an old blood glucose meter, a sensor applicator, or an infusion set inserter. Joe Solowiejczyk (Diabetes Nurse Educator, Family Therapist and PWD (Person with Diabetes) talks about the satisfaction of running over an old meter with the car, hearing the plastic buckle and break, seeing the device in pieces… it feels great. Since our son was especially mad about the pain and hassle of infusion set changes, we collected a few months’ worth of disposable inserters, put safety glasses on him, gave him a hammer, and let him smash away. He loved it. (And I mean, LOVED it.) It’s a great way to blow off steam. Every once in a while when things get frustrating, we repeat the process, and the whole family gets in on the act, including our daughter who, as a T1D sibling, has her own share of anger-inducing moments. (Think: he gets 8 skittles and I only get two; we have to wait to get ice cream because my brother’s BG is high; my brother gets a LOT of attention and I want attention, too!)
If you try this strategy, PLEASE be wise! Don’t attempt to smash anything without safety equipment, especially safety glasses. Supervise your kids - if they’re not old enough or mature enough to swing a hammer without risk of injury, then don’t do it. Try one of these other strategies…
2. Allow Her to Talk About Her Feelings
Sometimes as parents we unintentionally shut down healthy expression of emotion. When we hear our kids shout out the negative stuff, we want them not to feel that pain, so we try to steer the conversation away from negatives, try to cheer them up instead. As a result, our kids may feel judged, they may feel that negative emotions are not ok to express, they may believe their feelings are wrong. Instead we want to support and validate our kids real feelings first, then once they feel heard and acknowledged we can talk about a more positive “What’s next?”.
We can start by letting our child/teen express her very real feelings out loud, let her know it’s ok to be mad, it’s ok to say
out loud that diabetes sucks. Feelings of frustration and anger are valid: it really is unfair that diabetes creates demands that other kids her age don’t have; it really is overwhelming sometimes; and even though it’s necessary, diabetes care really isn’t fun. Joe Solowiejczyk says that if our kids say they hate diabetes, then that’s a sign that the parents are doing a good job. If we have given our kids permission to express their feelings – especially the negative ones – then we have communicated to them that they don’t always have to be coping well, they don’t have to pretend to be fine when they’re not. Hitting the wall doesn’t mean they’re weak, it means they’re normal. Even the strongest warriors sometimes break down.
Tips from the Trenches
A little while ago, my son told me that he was so mad at diabetes that he just wanted to say the worst word he could think of. I covered my ears and told him to go for it. Swearing isn’t exactly our go-to strategy in our family, but in that case it was busting out of him – if ever there was a good time to swear, that was it! ~Michelle
On the flip side, kids shouldn’t be pressured to talk if they don’t want to; let her know you’re there if and when she’s ready, and then respect her need for space. Open the door without dragging her through it.
3. Social Support
It’s healing to spend time with other people who get it. If you can, seek out other families who are also living with diabetes. Join an online group of D-parents. Get together to swim, paint pottery, or have a picnic. Go to a conference for families living with diabetes (like Kids ‘N’ Us in Alberta, Growing with Diabetes in Saskatchewan, or Friends for Life in Florida). Sign your child/teen up for an adventure with I Challenge Diabetes - they'll hang out with other kids and young adult leaders who have T1D, they'll challenge themselves physically and in terms of diabetes care, and come out stronger. Send your child to Diabetes Camp, or go to Family D-camp together. Get your young adult in touch with Connected In Motion.
Join a support group for families living with diabetes, like CPaK in Calgary. If there isn’t one in your area, create one. Friends for Life started as a few families meeting in Florida for a vacation, and look what it’s grown into!
It doesn’t really matter what you do, as long as your child has a chance to see other kids have to check their sugar, other kids experience lows, other kids have to get shots, or wear a pump – your child is not alone, and he’s not different in the company of other T1D kids. And as parents, you get a chance to share your fears, frustrations and joys with other parents who are facing the same challenges. We all learn from each other, and gather strength for the journey.
4. Find a Creative Outlet
Creative Arts are a great way to process feelings, to create meaning from hardship.
In fact, the concept for the movie Frozen grew from executive producer, John Lasseter’s experience with the diabetes dragon. Elsa was originally cast as a villain, and her “frosty curse reminded Lasseter of his son Sam, diagnosed with type 1 diabetes at age 10. ‘This little guy was being poked with needle after needle after needle and he asked ‘why me?’’ said Lasseter. ‘And I thought of Sam as I was thinking of Elsa. She was born with this. Why is she a villain?’” ¹ As a result, the script was overhauled, Elsa was no longer portrayed as a villain, but as someone working through the cards she had been dealt.
Also consider the Mercy Me song “Even If”, which is about lead singer Bart Millard’s experience with diabetes (his son was diagnosed at 2 years old): “When you’re a parent of a child with any kind of chronic illness, these things don’t go away. You have a lot of good days, but some days you feel like you’re losing bad. I was in the midst of one of those bad days when ‘Even If’ was written.” ²
Your child doesn’t have to be a famous producer or songwriter to:
- draw or paint how he feels about diabetes, with the colours, shapes and objects that he associates with it.
- create an art piece from diabetes garbage that would otherwise be thrown away (test strips, strip containers, syringe caps, empty insulin bottles, pump cartridges, infusion sets, tubing, disposable inserters… you name it). She can glue parts together to make a sculpture, glue pieces onto a piece of cardboard and then paint it, draw around it, colour it, add glitter…
- Create a stop motion video where he vanquishes the diabetes dragon.
- Journal about the challenges of diabetes, her feelings about it, and her hopes for the future.
- Write new lyrics for a popular song. Depending on his mood, the song could be brave, or silly, or sad or angry.
- Make a graphic novel with her as hero.
5. Write a Letter to Diabetes
Put into words how diabetes has affected you, what it took from you. Acknowledge the loss. Write down all the thoughts and feelings that you have been stuffing down. Encourage your child/teen to write a letter to the diabetes dragon. He may want to include statements like:
I feel __________________ when you get in the way of doing ___________________ or _______________________________.
I wish you didn’t live with us because _______________________________.
I’m mad when I can’t _________________________ because my blood sugar is high.
I’m mad when I can’t _________________________ because my blood sugar is low.
The thing I hate most about you is____________________________________________________________________________.
Be sure to end the letter in triumph, telling diabetes what it can never take from your family, what you have gained on the journey.
Because of you I am stronger and _______________________________________________________.
Now I know how to ______________________________________________________________________.
You’ll never win! Because Diabetes cannot ________________________________________________.
To illustrate this last point, here’s an example I saw recently at the Tom Baker Cancer Centre in Calgary, Alberta (feel free to use it as a springboard to make your own “Diabetes Cannot” poster):
6. “We’re in this Together”
When your child or teen has a bad diabetes day: hold them, tell them they’re not alone in the struggle, you’re there to walk this journey beside them.
7. Take a Break
Put the log book away for a few weeks. Be gentle with yourself. Ask for help. Tag team with someone you trust. Get a little lax (within the bounds of safety, of course – BG checks, insulin delivery, and basic diabetes care tasks are, unfortunately, always necessary).
8. Give Some Control Back
Diabetes steals many of our choices. My son sometimes has to eat when he doesn’t want to. He has to eat certain types of food when his BG is low, and other kinds when BG is high. We have to do injections and set changes and blood glucose checks and respond to the CGM alarms and wait to eat and stop playing to treat a low. All of this can make both parents and kids feel the need to gain back a sense of mastery and control, which is critical to emotional well-being. We can help our kids by building reasonable, age-appropriate choices into daily life, and by giving them opportunities to be involved in their own diabetes care (again, as is age-appropriate). For example, a preschooler may choose which pyjamas they wear to bed, or which colour of cup they drink their milk from; they can choose which of 2 fast-sugar candies they want for the next low treatment. A school-aged child can choose which foods to pack in their school lunch*, can pick a skin to decorate their insulin pump, can decide whether we play Wii bowling or tennis. An adolescent can choose which sports team to join, whether or not to go to that diabetes conference you’re planning on attending; they can review the log book with you, looking for glucose patterns that may need adjusting.
Tips from the Trenches
*Our kids (9- and 11-years old) make their own snacks and lunches for school. We tell them they need a starch, a fruit, a veggie, a dairy product, and a non-dairy protein – then we help them figure out which healthy foods fit. Then they can also choose a treat to add to the lunch box. They are much more willing to eat the lunches they made themselves, in comparison to the lunches my husband and I make for them. ~Michelle
9. Stay Involved
Avoid giving your child or teen too much responsibility too soon. Someone who has to shoulder a load that’s too heavy, or that they’re not ready for (emotionally or developmentally) may become resentful, angry, or depressed. As parents we need to stay involved – even through adolescence, even when it looks like they’ve got it – to make sure they have the skill and that they’re coping with the demands. I’ve heard from many adults with diabetes who say that they wish their parents hadn’t expected them to be so independent in their teen years. Check in with your teen or young adult, ask them how they’re doing, ask them which jobs feel the heaviest to them, offer to take back a task or responsibility for a day, a week, or indefinitely. The mental break they get from your support will have benefits far into the future.
10. Throw a Pity Party
Joe Solowiejczyk talks about the value of Diabetes Depression Days: you take the day off of work/school and plan a pity party. Stock up on ice cream, get into your pyjamas, and binge watch the saddest movies you can find. Ask your friends and family to call you every hour and tell you how brave and wonderful you are for living with diabetes. The whole exercise acknowledges the burdens of living with diabetes, and the strength you have to be doing so. And before you know it, you’ll be done with the pity party and ready to move on.
11. Throw a Celebration Party
Plan a we-rock-because-we-get-up-every-morning-and-give-it-our-best-shot party. We’re not celebrating diabetes here; we’re celebrating that we’re winning over diabetes, because we suit up and show up every day. That deserves a pat on the back. Some families schedule this celebration for the diaversary (anniversary of the diabetes diagnosis), or for a set day every month. Others pick a day at random. I think any day is a good day for a party.
Tips from the Trenches
Every year on July 6 (the anniversary of our son’s type 1 diabetes diagnosis) our family goes out together to celebrate another year of victory over the diabetes dragon. Sometimes we go to Marble Slab Creamery, where we get the biggest ice cream cone we can eat; we splurge on the chocolate and sprinkle encrusted cone; we add the best mix-ins. And then he boluses and we live in the moment, eating our treats without worrying about what his blood sugar will be later. ~Michelle
12. Message of Strength & Power
Once your kids have expressed their anger – they’ve shouted or smashed things or created a work of art – wrap up your conversation with a positive message, a message of power. Something like: I know that diabetes sucks sometimes, but I also know you’re stronger than diabetes. You can do this. I’m proud of you.
13. Professional Help
If you or your child is struggling to cope with feelings of anger and sadness, if things have escalated beyond your ability to manage as a family, don’t hesitate to enlist the help of a psychologist, social worker or family therapist. If you’re not sure how to access services, talk with your/your child’s diabetes health care team or family doctor. You don’t need to struggle alone.
Much thanks to Joe Solowiejczyk (RN, MSW, Diabetes Nurse Educator, and Family Therapist) and Dr. Laura Kaminsky (Psychologist at the Alberta Children’s Hospital Diabetes Clinic) for sharing strategies that helped our family directly, and that lead to the creation of this article.