Parents Suffer But Children With Diabetes Suffer More

I’ve been active in the Diabetes Online Community for an entire decade, literally since my twins were born. I’ve noticed that parents suffer a lot due to having children with diabetes. I’ve always had compassion for this because I could empathize and did empathize with my own parents growing up–it is gut-wrenching to see your child develop and live with an incurable, life-threatening illness. I know what it feels like to grow up with diabetes as a little girl so when my little girl was diagnosed, I felt strong emotional and physical pain. Type 1 diabetes in a child IS hard on parents.

However, something I’ve long wanted to say that has more weight now that I’m also a parent of a child with diabetes is that parents do well to remember that no matter how much suffering you’re experiencing, it’s worse for your kid.

Since I was 10 years old, when my sister was diagnosed, I’ve heard the following from type 1 parents (I never heard my parents say these things, thank goodness):

“Kids are resilient, it’s so much harder for the parents”.

“I’m glad my child got it early, they don’t know life with type 1 so this is much easier.”

“Children are different, high blood sugar doesn’t bother them much.”

“It’s so tough for adults who are diagnosed because they didn’t grow up with diabetes and get used to the needles and everything.”

These comments, while they might be someone’s valid opinion, for which I’ve never received an explanation that makes enough sense to me, indicate a lack of empathy and ignorance on the part of the parent, towards the type 1 child.

Parents are adults (or ought to be) and so they have much more in the way of resources with which to cope with difficult situations. I’ve been the kid with diabetes and I’ve been the parent of a kid with diabetes and I┬áthink it’s harder to be the kid. You still have worry, fear, and increasing awareness about how diabetes affects your life and you have to deal with it without completed brain development and before you master many other tasks.

We look at children and they play, they smile, they laugh, and we tend to forget that deep down they think and feel very deeply. Often, we talk to others about how they’re doing and we’re only giving out our perception versus the reality according to that child. So we have to be aware that in the midst of our suffering, it is our child who lives with this disease. It will move out of your home one day, but not your child’s body. Your child knows that and so while you’ll get a break one day, they know they won’t. You’ll likely worry for them their entire lives, but it won’t be the same. In my case, I’ll live with it forever alongside my daughter but I can’t carry it for her so she’ll have to bear all her own burden and I have to respect that reality.

Amidst your suffering, don’t give your child the impression you’re suffering more than they are.

As a kid, it was annoying for me to hear adults tell each other about how their job was the hardest and the diabetic kids were just living it up as normal kids. I did the teenager eye-roll, which was invented precisely so that kids would have a way of physically coping with the desire to throw something across a room when adults showed they forgot what being very young was ever like. Kids don’t have an absence of suffering, they just show it differently.

If diabetes is bad, then more time with it can’t be good. Impossible. So, that’s my thinking on the topic of it ever being a good thing that someone gets it sooner versus later. Damage adds up over time. It’s simple arithmetic and statistics. Damage is bad and who knows what someone’s personal threshold is for damage turning into a complication.

High blood sugar still affects kids, even if they say they can’t feel it and even if they can still be good at sports like I was, despite running high numbers. Children struggle to pinpoint their symptoms, this is why pediatricians get trained in the specific ways children describe certain sensations. They also have acquired less potential for neuroticism in their short lives so you’ll not hear so much complaining from them the way you will from an adult. Deep down, the symptoms they feel affect them. And at a cellular level, they’re absolutely being affected, the effects of which may not be very noticeable until they’re adults who must now take on this huge burden of accumulated damage.

I’m constantly wowed by the things my kids say, evidence that I too can forget their capacity for nuanced and complicated thoughts and feelings at their tender age. What children with diabetes need (speaking as a former child with diabetes) is to be asked about how they feel and what they think. You might discover they don’t care if someone tells a diabetes joke (that outrage might just belong to you) and they might feel profoundly sad or tired. Try not to speak for them. Don’t tell others that your child is empowered and handling this well. They might feel that you’re misrepresenting their experience and that makes it hard for them to tell you if they’re having a particularly hard time–they don’t want to make you out to be a liar. Listening to them talk about their diabetes from their perspective is probably one of the most helpful things you could do.

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Yes kids have it rough, but I tend to also have a great deal of sympathy for the parents who help them manage it. I was 17 when DX’d and I was good with it, expected it really. But I saw my parents suffer. The guilt and second guessing was upsetting to me. I knew if either of my sons had been Dx’d I woudl have felt it. Yes, the kids have it terrible, but so do the parents.

Agreed. That’s exactly what I said. And I am a parent of a child with diabetes so I know all about it.

Those comments are awful. ???? I particularly loathe when adults say my child is lucky to get type 1 so young as he won’t know any difference! I find that incredibly harsh when the reality is the exact opposite. I wish I could take t1d from my amazing son every single day. Yes, it’s exhausting for parents, but as you say, the t1 child has this forever. My husband and I will do whatever we can to support him and alleviate his burden. It is most definitely more difficult for our child. We do talk with him about his feelings and fears and he knows he can come to us at any time with any worries at all.
Thank you for writing from both perspectives. ????

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