I understand that scientific studies must be completed so that it can become more than anecdotal evidence. These studies need to be published in reputable academic journals, showing the researchers have followed the proper protocols to get to the conclusion.
But for this latest study, I could have saved everyone a lot of time and money.
This starkly titled study was published on February 3, 2021 in ADA’s Diabetes Care: Risks of Psychiatric Disorders and Suicide Attempts in Children and Adolescents With Type 1 Diabetes: A Population-Based Cohort Study.
A large study in Sweden assessed children diagnosed with T1 diabetes and their healthy siblings over a longitudinal study (and also combined a comparison to the general population). Upshot? Here it is:
Children with type 1 diabetes are at high risk of psychiatric disorders, which seems to be a consequence of the disease rather than due to a common familial etiology. The results support recommendations on comprehensive mental health surveillance in children with type 1 diabetes, especially in recently diagnosed children.
In their research, the investigators found the risk for psychiatric morbidity tripled in the first six months of diagnosis. Even long-term, it was still twice as high for the entire observation period compared to the control subjects. I could have told them that.
For a child, a Type 1 diabetes diagnosis is traumatic. (Yes, it’s traumatic for the whole family. Let’s focus on the kid right now and what she/he thinks.) You go from being fine (or your concept of fine) to being told that you have an incurable disease that you can, at best, manage well enough to avoid major complications. Of course, you’ll have to be diligent, stab yourself with needles and lancets, and despite your best efforts, you may still get complications. You tell me if that would send you to your happy place…
I was diagnosed in 1983. Less than 24 hours after my Type 1 diabetes (it was called juvenile diabetes back then) was confirmed, I was in Joslin Clinic’s inpatient Diabetes Treatment Unit where I spent 11 days being indoctrinated. I was too busy learning about insulin and exchanges and sick day rules to really think about what the long-term impact on my life would be.
When it overwhelmed me, it wasn’t in the first six months. In my experience, my medical team and my family worked hard to prepare me for the long slog ahead to the best of their abilities. I know that I was loved and that I was educated in my disease. It took a year and a half, away from my family for an extended period of time on my own.
After the “novelty” of this diagnosis wore off, my head went to very dark places. I would have gone spelunking because I was a teenage girl, but diabetes gave me exclusive entry to depths that most kids don’t reach. Instead of crying over a crush, I was crying over a shortened life span and all those complications that everyone’s grandmother had. Guilt over blood sugars and A1Cs and feeling judged had me questioning my self-worth. My inability to get my blood glucose levels under control (thank you, puberty) for very long played a part in how I felt day-to-day. How the hell was I going to do this every day for the rest of my life?
We Can’t Do This Alone, But We Are Alone
I’ve never kept my bouts of depression a secret. It is liberating to talk about the things that scare you, as long as you know you feel safe. I have had some incredible medical professionals who have led me out of the dark places. I have some wonderful fellow T1 talkers who shine the light on the strong connection between T1 and depression. We can’t do this alone. It’s exhausting. And terrifying.
You can have the best cheerleaders on your team, but they’re not going to win the game for you. (That’s as close to a sports metaphor as you’ll get on this blog. Go team!)
Parents go through their own private hells when a child is diagnosed and I encourage any family to get counseling to talk through the tough times. (Think about the siblings who can become jealous because the T1 kid gets all the attention. I’m grateful that my brother wasn’t like that - at least that I know about.)
But in the end, it’s us. We are alone. The Type 1 child, no matter how protected, loved, educated, watched over… when we close our eyes at night, we think. And dream. And wonder. Sometimes, we travel to dark places. Some of us don’t want to come back. And that’s when it’s crucial that we have people who help us.
Researchers needed to do the studies to tell the medical community what we’ve been telling them for years. It’s not all in our heads. We are at risk simply because we have diabetes. We need a holistic medical team for every T1 child (and dare I say it, T1 adult): someone to teach us how to use insulin and count carbs and someone to teach us how to live our lives with diabetes in a healthy way - body and mind.
If you (or someone you know with Type 1 diabetes, especially those who are newly diagnosed) need help, please… talk with your medical team about your thoughts. There are options and support groups and professionals… For your children who have been diagnosed, please understand that no matter how much love you show them, they may need outside help that you can’t give. That’s OK. Really, it is.
Today is one of those days.
Living with diabetes is sometimes akin to paddling quickly in a leaky dinghy, trying to cross a river.
- You have a goal: the other side.
- You have tools to help get you there: a bucket to dump the water out that keeps pouring into the bottom and a motor or a paddle and even a rudder to get you moving in the right direction.
- You have others to help you: those in your boat with you or those encouraging you to row faster from the other side.
Despite all this, you still have to paddle fiercely while using the bucket to prevent you from sinking deeper and drowning.
If the weather is warm and sunny and the current is still, the trip across isn’t too bad. You’re tired, but you made it to the other shore.
- Rough weather? A torrential downpour? Pitch black of night?
- Lose a paddle? Can’t afford to buy another motor?
- Those on the other side are screaming at you, not in encouragement, but in frustration that you can’t get there fast enough or you’re just plain “paddling wrong”?
And that river is rocky. You have to dodge the rocks you can see and hope that you can avoid the ones that scrape the bottom of your boat that hide under the surface. Some of those rocks can rip a gaping hole into the side of your tiny dinghy and you are… sunk.
You have to climb into that boat every day. No breaks. Exhausted? Too bad. Feel like you can’t do it again? Too bad.
It is too bad.
And for anyone who has diabetes, our battered boats cast off anew every day to the other side (and there is always another side), while we hope to reach it unscathed.
Any wonder that people with diabetes are at a higher risk of depression than the general population? That our burnouts have serious consequences to not only us, but our friends and families?
Today, my boat is taking in more water than I care to admit. My blood sugars are slightly above range, but it’s because I’m exhausted from lack of sleep. (Alarms on my CGM/pump went off to let me know that I was getting a weak signal. My blood sugars were fine, but because the CGM couldn’t tell, it woke me up.) My food intake has been more caffeine and less salad today than I wanted. Even the good stress I feel over launching my dream is still stress.
If I didn’t have diabetes, my dinghy may have holes from other things. I may not know how to navigate other waters or I may be the one on the other side of the river, yelling encouragement.
But I have diabetes. And a leaky boat.
And as I look down the river,
there are millions of leaky boats struggling along with me to get to the other side. Every day.
May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?