Coping with the Diabetes Dragon:
Diabetes Distress, Anxiety, Anger and Fear
Michelle MacPhee, M.S. (Applied Psychology)
Living with a chronic illness is challenging. It takes energy to tame the dragon – physical, psychological and emotional energy. There have been times during our family’s journey with diabetes when I have grasped for this needed energy, but come up empty-handed. And I know I am not alone – in talking with other parents with children with diabetes, I have learned that most of us at some point are yearning for a break, aching to put this load down – for our own sake, and especially for our children’s sake. The nature of a chronic illness such as diabetes, however, is that we cannot completely walk away from the demands; neither can we sprint to the finish; instead, we have to learn to pace ourselves to run the marathon ahead.
Joe Solowiejczyk, a nurse, diabetes educator, and family therapist, talks about the concept of Diabetes Distress1, in which a person feels the emotional states which are normally associated with depression, but at a level that is not severe enough to be diagnosed as depression. On the outside, a person seems to be doing alright; they score high in coping abilities and don’t talk much about how diabetes is a struggle. Externally, it may appear that there’s no problem, but internally, a person may feel sad, overwhelmed, anxious, or alone. This describes me almost perfectly for the first two years after my son was diagnosed with Type 1 Diabetes. I did what I needed to do to keep him safe, to react to highs and lows, and to adjust his insulin doses. But in my mind and heart, I was tired; sometimes I would burst into tears over something minor – no test strips left in the container, an ad on TV with a laughing child; sometimes I would get angry that other parents didn’t have to weigh and measure their child’s food before they could feed him; often I would worry about my son’s blood sugar going low in the night, or how that 25.6 at the last BG check was damaging his body. Will he be bullied when he enters school? Will he be able to pay for his diabetes supplies when he grows up? In some ways, my worries echo those of most parents, even whose children do not have a chronic illness. But compared to life before our son’s Type 1 Diabetes diagnosis, I was struggling; my worries were beating me up
Psychologist and diabetes expert Dr. Richard Rubin describes a similar phenomenon which he labels “diabetes overwhelmus2”, in which the physical and emotional burdens of diabetes care create stress levels that are so high, that a person’s coping mechanisms break down. When we feel overwhelmed, we may adopt a “why bother” attitude; we may either give up on diabetes care altogether, or become at least become less active in doing what needs to be done. Less proactive attention to diabetes-care leads to reduced control (more BG swings, more frequent out-of-range blood sugars), which in turn increases the stress of diabetes care; we get frustrated more because our efforts don’t seem to be having an effect.
Why is Diabetes Management So Difficult for Most People?
As Dr. Rubin points out, diabetes is a demanding disease. The demands are continuous – the need to check BG, deliver insulin, count carbs, look for lows, and problem solve around obstacles is always there. Further, these constant demands are unpleasant – there are shots, finger pokes, and lifestyle changes; you have to wait for insulin to kick in before you can eat your Halloween candy, sometimes when BG is high you have to wait until it comes down; the high price of eating fast food whenever you feel like it is even more obvious than in the non-diabetic population; sometimes it’s a chore to live healthy. And finally, the results are often unpredictable. Doing your best and working hard does not guarantee in-target BG readings, nor goal A1C’s, nor protection from diabetes-related complications; there are many factors that are beyond our control. The end result of these continuous, unpleasant demands with unpredictable results? Many of us know it all too well: diabetes care can be overwhelming and exhausting.
Cultivating Coping Skills
There is reason to be optimistic, however.
There are a number of things we can do to shore up our coping skills, to create emotional healing for ourselves and our families.
In his article “Diabetes and Depression: Some Thoughts to Think About”¹, Joe Solowiejczyk suggests the following strategies:
1. Acknowledge Feelings of Powerlessness
It took me over two years to put a name to what I was feeling, to realize that I felt powerless. Powerless to have prevented this from happening to my son, powerless to make my son’s hurt go away. Even though on the surface I knew that Type 1 Diabetes is an autoimmune disease triggered by factors beyond my control, deeper down I wondered how I had failed as a parent. I spent countless hours trying to figure out what I had done wrong that had triggered my son’s diabetes: Did I give him too much sugar? Was it because he wasn’t exclusively breast-fed? Should I have been more vigilant about keeping him away from other kids when they were sick? Should I have delayed his immunizations? How did I fail to protect him from this?
Part of healing for me involved the realization that there was nothing I could have done to prevent my child from getting diabetes. Healing also involved acknowledging that there’s nothing I can do to make it go away. I maintained for myself an illusion of control: If I’m smart, I should be able to think my way out of this; If I try harder, research more, tighten my grip, I should be able to get perfect results (in-target BG’s, lower A1C’s, no highs or lows). Now, I don’t want you to think that I’m suggesting our efforts don’t make an impact, or that nothing we do matters – of course we can get better BG management if we follow sound diabetes-care practices. But we can’t control everything; striving to do so just wore me out. It was coming to terms with this powerlessness (intellectually, spiritually and emotionally) that was tremendously empowering for me; when I recognized the limits of my control, I was better able to take action to improve the things I could control.
2. Accept Reality
It took some time in our family for the shock to wear off, to realize that our son has diabetes and that it’s not going away, he won’t grow out of it, and there is currently no cure. This is our “new normal”. My husband has a trademark phrase that is his philosophy for life: “It is what it is”. For us, this means there’s nothing to be gained from wishful thinking; instead we strive to accept our reality and work to make things manageable within that reality.
Letting go of wishful thinking is sometimes easier said than done. As parents, my husband and I often wish our son didn’t have to deal with this the pressures of chronic illness. We wish he didn’t have to endure shots/infusion set changes and finger pokes and blood tests; we wish he could have a “normal” childhood, like other kids who don’t have to stop playing in the middle of a game to check their blood sugar or treat a low; we wish we could take diabetes for him, would gladly endure all of this instead of him. But the reality is we can’t. So instead we need to focus our efforts on the factors over which we do have control, and prepare our son as best we can for the future that lies ahead of him. In this way, the goals for parenting our child with diabetes are no different than those for our non-diabetic child.
3. Deal Effectively with Anger
Anger is a natural response to situations in which you feel powerless. It’s normal to be angry about your family’s current reality: it is unfair that your child has to deal with this and that your family life isn’t what you pictured it would be; diabetes does suck sometimes. It may help to ask yourself: What specifically am I angry about?
I’m angry that my child got diabetes.
I’m angry that this restaurant doesn’t have carb info.
I’m angry that my child’s school won’t support us in checking his blood sugar.
I’m angry that my pharmacy is out of my usual diabetes supplies.
I’m angry that I have to stop in the middle of a hockey game to treat a low.
I’m angry that other moms don’t have to count and measure everything that goes into their child’s mouth – they can just fill a plate and feed their child without all this constant thinking and calculating.
I’m angry that the babysitter didn’t follow my instructions and now my son’s BG is high (or low).
I’m angry that I can’t go out with my wife for a nice dinner and a movie because we don’t have anyone willing or able to care for our child in our absence.
I’m angry that _____________
4. Deal Effectively with Fear
It’s normal to be afraid sometimes; there are risks associated with diabetes and things we need to look out for. But sometimes our fears can take over, the risks can be exaggerated, the fear controls us. At those times, it may be helpful to face your fears, name them. Monsters live under the bed, so turn on the light,fear from diabetes take a good look under the bed, talk about your fears with your spouse, other parents, your child’s doctor, a psychologist or counsellor. Ask yourself: What specifically am I afraid of (in terms of diabetes)?
I’m afraid my child will have a low during physical activity.
I’m afraid my child will have a low during the night and not wake up.
I’m afraid my child won’t take care of herself when she moves out on her own.
I’m afraid my child will suffer from diabetes complications in the future.
I’m afraid my child will suffer financially when he grows up because he has to buy diabetes supplies, may not have health coverage.
I’m afraid my child will miss out on typical life experiences because of diabetes (travel, friendships, sports teams, sleep-overs).
I’m afraid that if something happened to me, no one would know how to take care of my child.
I’m afraid _________________________
Remember that fears are thoughts, they are not reality, neither are they a guarantee of future bad outcomes. All we can do is make reasonable preparations for future problems (ex. start a savings account or RDSP for your child’s future financial needs; make a reasonable effort to establish good diabetes self-care now to reduce the risk of complications later; spend time adjusting your child’s insulin doses to reduce the occurrence of highs and lows; put plans and procedures in place for babysitters and school staff to ensure that everyone is clear on what needs to be done and how; talk to other parents about how to deal with exercise and blood sugar).
5. Deal Effectively with Anxiety
When valid fears consume too much of our time and energy, when they “set up shop” in our minds, we may feel restless, unable to concentrate, unable to finish tasks, irritable. When reasonable fears have become unreasonable, don’t feel you have to manage alone: talk to your spouse, a good friend, other parents, your child’s doctor, a psychologist or counsellor.
6. Deal Effectively with Frustration
As Joe Solowiejczyk points out, we have an opportunity to grow spiritually from dealing with frustration. Frustration crops up in a variety of ways:
I’m frustrated that the clinic nurse hasn’t called me back when I need her support.
I’m frustrated at the hint of judgment when my neighbour keeps asking me if it’s really okay for my son to eat his Halloween candy.
I’m frustrated that my wife didn’t buy test strips and now we’ve run out.
I’m frustrated that it took us twice as long as other people to get through airport security.
I’m frustrated that my daughter doesn’t check her blood sugar as often as she’s supposed to.
I’m frustrated that __________________
In short, emotions are not good or bad, they just are. They give us feedback about how we are dealing with things and whether or not we need to adjust our perspective. As Joe points out, the goal is not to eliminate these feelings, but instead to explore them, thereby growing spiritually from dealing with them – to embrace imperfection, to understand others’ struggles, to relate to others on a deeper, more meaningful level.
In a similar way, Dr. Rubin suggests a systematic approach to identifying and dealing with the stressors:
1. Ask yourself: What is the hardest thing for you right now about living with diabetes?
Be specific. Think of something you can actually see, could take a photograph or videotape of. To say everything is hard about diabetes doesn’t give you a place to start; instead narrow it down to what Rubin calls “sticking points”, those specific situations or tasks which seem to sap energy and trigger diabetes overwhelmus. Some examples of sticking points for you or your child may include:
- Checking BG when I’m out with my friends.
- Resisting snacking in the evenings when I watch TV.
- Dealing with the lows my child experiences during physical activity.
- Getting up in the middle of the night to check my son’s BG
- Hearing my daughter cry when I give her injections.
Be honest with yourself . Those who say “nothing is hard about diabetes” may be in denial, or may be feeling significant fear that they attempt to manage by avoiding that fear.
2. Ask yourself: Has there ever been a time when that sticking point wasn’t so sticky?
This may give you clues as to things you or your child can do more consciously or consistently to avoid and/or deal with these sticky situations.
3. Plan for Change:
Identify specific goals, defined in terms of behaviour.
Since behaviours are more controllable than outcomes, frame your goals in terms of what you or your child will do to improve the situation. We cannot directly control an outcome, such as a lower A1C, but we can decide to check BG at least 4 times per day, which is likely to impact the outcome in a positive way. In this way, improved outcomes are likely to result from engaging in behaviours that support the goal.
Identify the things that will make it easier to reach that goal.
Incorporate those things that worked in the past, along with possible new strategies to try.
Talk to other parents, consult your health care team, check out relevant sections on this website for ideas for new strategies to try.
For example, if your goal is to check blood sugar at least 6 times each day, you may find it helpful to set an alarm to remind you to check blood sugar. Or you may choose to leave the BG monitor out on the table to remind you to check before meals. Or if your child is forgetting to take her monitor when she leaves for school, you may get an extra monitor to leave at school
Identify consequences for behaviour.
What positive event will you make happen if you or your child completes at least 6 BG checks for a week?
What privileges will be withdrawn if this doesn’t happen?
Consider both positive consequences for engaging in behaviours which support the goal, as well as withdrawal of positive consequences if you or your child engages in behaviours which undermine that goal (or fail to engage in behaviours which support the goal).
Make sure the consequences are short term. You may want to start with one day of blood sugar checks, and a reward at the end of each day, such as 15 minutes of video game time after supper.
Make sure the consequences are meaningful for your individual child. Only use as a consequence access to video games, for example, if your child actually cares about whether they can play video games. For some children, praise/your pride in their accomplishments may be a meaningful consequence; for many others, praise may not be impactful enough to change their behaviour. Pay attention to your child’s interests and the things she values, then make one of those things contingent on carrying out a specific diabetes-care behaviour.
4. Experiment! Test your plan and work out the bugs.
Anticipate that there WILL be bugs, no plan will work perfectly from the start. Use the results of the experiments to refine your plan, change your expectations, goals and consequences as needed.
Put in place procedures for monitoring behaviour and enacting consequences. For example, your child keeps a written record of time and results of each blood sugar check. You review the written record at the end of each day. Joe Solowiejczyk suggests a weekly family meeting to review how your child is meeting behavioural expectations.
5. Involve the Family / Establish a Network of Support
Help your child (and you) get what he/she/you want and need from family and friends. A support community (family, friends, diabetes support group, online website or blog) should have qualities of: caring, warmth, support, understanding, healthy limit setting (from parents and other significant adults); positive interactions with others who are living with diabetes, strong positive connections with knowledgeable and skilled professionals.
As diabetes educator Paul Madden points out³, being a part of a nurturing support system empowers young people (and their families) to make healthy decisions related to their diabetes and their lives.
Ask your child:
What do we, as your family (or specifically as your parents) do that truly helps you with your diabetes?
What do we, as your family (or specifically as your parents) do that makes it harder to manage your diabetes?
What could we, as your family (or specifically as your parents) do (realistically) to help you with your diabetes?
What does my spouse/friend/family member do that truly helps me manage my child’s diabetes?
What does my spouse/friend/family member do that makes it harder for me manage my child’s diabetes?
What could my spouse/friend/family member do (realistically) to help me with my child’s diabetes?
Consider accessing local or online support groups.
6. Nurture Emotional Coping skills
Humour – Find the funny in everyday life. Watch a sitcom, see a funny movie, go to a comedy club, hang out with people who make you laugh.
Feelings of Hope – Sometimes we need to be inspired, to see others who have run the race successfully. Seek out positive role models for you, your child, your family: athletes, celebrities, other kids living with diabetes, regular families coping well.
Feelings of Faith – Cultivating belief – in God, in medical science and technology, in oneself – can reduce fears and help us see the future as full of opportunity.
Yes, living with diabetes is challenging. But I have learned in life that everyone has a dragon to face; “into each life some rain must fall” (Longfellow). I have also learned, and am still learning, that our family’s life has been so much richer since I accepted diabetes as one of our dragons, since I surrounded myself with the support of friends, family and other type 1 families. Now I feel blessed to be learning to waltz.
The above information was reviewed for content accuracy by clinical staff of the Alberta Children’s Hospital Diabetes Clinic.
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