Invisible Illnesses and Their Very Really Toll on a Caregiver’s Body

By Amanda Sterczyk MA, CPT

Have you ever looked at someone on their phone and shook your head, silently judging them for being addicted to technology? What about when you see a presumed “helicopter mom” swooping down to save the day with their (seemingly) healthy kid? 

I know more than once I’ve caught the rolling eyes of a silent observer when my phone has dinged in public and I’ve pulled it out to check. But what that silent observer doesn’t know is that I have a child with an invisible illness. A very real, life-threatening invisible illness that requires monitoring and action twenty-four hours a day, seven days a week. No holidays, no breaks. 

Does it matter to you what that illness is? Do I need to explain myself to gain your understanding? No matter, I’ll tell you anyway. She has type 1 diabetes, an auto-immune disorder in which the immune system mistakenly attacks the insulin-producing cells of the pancreas. Her body no longer produces insulin, so she has to inject it every single day of her life. Multiple times a day, actually. 

Currently, there is no cure for type 1 diabetes and families of children with type 1 diabetes are trained as their primary care providers in managing the disease. Now, before you start thinking that it’s something we fed our kids that caused this, let me stop you there. It’s about insulin and the body’s inability to produce its own. The management of monitoring blood sugar levels, counting carbs, factoring in stress/illness/physical activity to the administration of insulin happens day in and day out, wherever and whenever it’s needed. Because too little insulin causes death—typically in weeks or months. But too much insulin also causes death—in minutes and hours. 

And sometimes, teenagers and young adults can experience a severe low blood sugar while sleeping, a low from which they don’t awaken. It’s called “dead in bed syndrome” and I guarantee that every parent of a child with type 1 diabetes has thought about or worried about it on more than one occasion, especially when they’re not sleeping under the same roof. Let me tell you about one of my experiences.

The text came in just after three-thirty in the morning. I reached over to pick up my phone and confirmed what I feared: it was from our 16-year-old daughter (type 1 diabetic since the age of eight), who had reached out from a friend’s sleepover. As soon as I responded to the text, my phone rang in my hand. In this case, her blood sugar was dropping, she couldn’t get it to stabilize, and she was scared to go to sleep. I hopped in the car and raced over to pick her up. 

Once home, the two of us stayed on the couch until 5:00 am, when her levels stabilized and we both felt okay with her going to bed. I let her sleep in that morning, minus the 7:30 am check to ensure she was still okay. 

This is our reality—disturbed sleep, constant worry, middle of the night checks—and it’s why my phone is ever present in my waking and sleeping world. I’ve heard other T1 parents say their kids will call or text them from down the hall, when they’re too weak from a low blood sugar to call out for help or even walk a few steps. 

The worry, coupled with the interrupted sleep patterns, take their toll on a caregiver’s physical and emotional well-being. In my case, I find it takes me longer to recover from scary nights like this as I get older. I asked other moms how their child’s diagnosis had changed them as a parent. Their responses were filled with overwhelm, stress, worry, lack of sleep, isolation, inability to function fully. It’s like a second job we didn’t apply for, and for which we’re on call 24/7. Our brains are FULL with diabetes and we rarely replenish our need for sleep — a combination that often causes us to be distracted in the presence of others, or even shying away from socializing altogether.

On the flip side, it’s created a stronger, special bond with our children—we nurture and save our kids all day (and night!) long. In our case, we have a running joke: now that our daughter is a teenager, she regularly sleeps in on the weekends. Often, I inadvertently wake her up when checking on her with a “oh good, you’re still alive” comment. 

There’s so much misunderstanding and misinformation about diabetes. While you may have the best intentions when you provide unsolicited advice to a type 1 parent, please just stop. There’s no special diet that’s going to cure our kids, let alone “get them off insulin.” Seriously, the insulin is keeping them alive, why would we want to get them off it? Rhetorical question, my friends. And FYI, ketones are a bad thing in our world, not something to strive for, like many dieters now do. 

So, before you judge someone for constantly being on their phone, take a moment to understand what’s going on in their life. And instead of advice, maybe you could ask them how they’re doing.

Invisible illnesses: type 1 diabetes and stage 4 cancer

Image source: Laura Montgomery (Laura and her son)