We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)
Emotions. There are so many emotions surrounding diabetes. Her feelings. Our feelings. The feelings of everyone involved. Mental and emotional aspects of diabetes are tough, maybe even tougher than physical aspects. Because you get used to blood, and needles, and finger pokes, and bionic parts, and beeping. And, come to think of it, it’s more visible, more tangible, more straightforward. The emotional stuff is trickier, harder to notice, harder to understand.
Lots has been said about stress and burnout of T1D parents. I’ve written several posts about it before. When we are on our best behavior, we handle well. So much so that I wrote a column for Insulin Nation on tips and tricks on handling burnout.
But enough about us. Let’s talk about V. While she’s generally a rock star and takes it in stride with remarkable resiliency, humor and optimism, it’s not always easy. What makes it even more complicated is that in addition to managing emotions about diabetes, she has to manage emotions directly caused by diabetes.
I remember how several weeks leading up to V’s diagnosis we noticed that she became really emotionally volatile. There would be meltdowns seemingly out of the blue, over-blown reactions to minor things. She’d be sent to her room, raging and sobbing, acting and feeling completely out of control. My husband and I watched in bewilderment. What was going on? Was this a preview of what is to come in adolescence? But she’s only 8 years old, how can it be? But then I’d talk to some friends and they would share how their daughters sometimes acted the same way. So maybe it’s normal girl drama? But V was fairly even-keeled before. Something did not make sense.
We’d talk to her, trying to help her manage her feelings and behaviors. What is going on? We just want to understand so that we can help you. She could not explain. She’d be sobbing and telling us that she did not know why she was so upset or angry, and that she could not control it. It was especially bad around mealtimes. Suddenly hunger became intolerable, an almost certain trigger for an epic emotional meltdown.
T1D explained it all. V’s undiagnosed BG swings created tsunamis of mood swings. Highs translated into intense and uncontrollable rage with a generous side of strong upset. Lows brought out the whining, complaining and crying at the drop of a hat. But at least now we knew what was going on and we felt more empowered to handle it.
Not that it’s straightforward. How do you tell a difference between a “high angry” or “regular angry”? How do you know when the tears come from feeling beat and tired due to a stubborn high or low, or due to some unrelated upsetting event? How do you tell “hangry” from bad attitude? How do you know when to hug and comfort your child or when to discipline her for talking back or lashing out?
Helping a T1D child manage her emotions requires us to rely heavily on trained intuition. If something feels amiss we must first rule out BG as the culprit. “When in doubt, test BG” is our go-to motto. Another one we had to adapt quickly is “Don’t make decisions when you are high.” Closely related is “Don’t try to deal with a conflict when you are high.” And there’s always the good old “FOR CRYING OUT-LOUD DON’T JUST SIT THERE, TAKE A FAST ACTING SUGAR!!!” Wait, that’s not a strategy, it’s our own reaction. Because you know what, when you are a parent operating in an exhausted and sleep deprived mode, sometimes the last thing you want to do is be in tune with your child’s emotions. You just want your child to listen, comply and “act normally”. As you may have guessed, this does not work out well.
In some ways things have settled down a lot since diagnosis. Now that V’s BG is more tightly controlled, these meltdowns are far less frequent. Her emotional reactions are still very much affected by highs and lows but we all spot and understand them better. In other ways, things are getting more…well…interesting. Puberty is fast approaching and that emotional volatility is inching up regardless of what diabetes is doing. It’s for all of us to figure out. Even in V’s 504 there is a line addressing behavioral aspects of diabetes, and instructions to test BG if V’s behavior appears out of character before considering any disciplinary actions.
The roller-coaster continues. Strap yourselves in, it’s one hell of a ride.