Mental Illness: The Diabetes Complication We Don't Talk About

Someone recently asked me if I could remember my first words to my daughter. Usually I prefer to tell people my first thought when I saw her: “I’m yours.” It’s true, and it also fits the image of the new mother with her pastel-colored halo.

But the first meaningful words I said to her was when were alone. I made her a promise: “I promise I will try my best not to cut you with my broken edges.”

Why? Because I have lived with clinical depression and anxiety disorder for most of my life. And, quite frankly, it’s one of the reasons I was hesitant about the decision to have a biological child of my own. What if I passed it on? What if my branch of the family tree became my child’s gallows?

Why don’t I just tell people that? Because nobody likes to talk about it.

Fast forward two years. I’m sitting next to her in ICU. She’s in diabetic ketoacidosis and has been diagnosed with type 1 diabetes. I’m not the type to pray; I do research instead. That’s what I do for two weeks in the hospital: research – reading articles, speaking to endocrinologists, diabetes educators, nurses, online type 1 communities. That’s what I continue to do, to this day. Every day.

But the one complication that was hardly ever mentioned was mental illness.

Why? Well, I guess in the business of being your own or someone else’s pancreas, of keeping a human alive (whether through giving insulin, glucose, or nagging them to do it themselves) these issues get lost.

And also because, again: we don’t like to talk about it.

But I’m going to, and it’s not going to be fun. So if you’re triggered by content mentioning self-harm or suicide – stop reading.

The fact is that children with type 1 diabetes are at least twice as likely to be diagnosed with a mental illness before they turn 18 – whether it’s depression, bipolar disorder, anxiety disorders, schizophrenia, eating disorders, or conditions like ADHD.

Depression
This could be situational or clinical.

Situational depression, also known as reactive depression, refers to a response to your circumstances – usually the result of prolonged situations of stress or grief. Think about the emotional toll type 1 diabetes takes – especially on a child who is not always able to make sense of his/her emotions. Consider the knowledge that your own body has turned against you, that you’re different, that there is no cure, that you know you may simply go to sleep and not wake up, that your condition affects your family, and all the other emotions associated with diabetes burnout on top of that. It’s… a lot. If you feel you’re doing nothing but treading water, how can you be expected to see the shore?

Clinical depression, also known as major depressive disorder, has more to do with the actual brain chemistry – more specifically a biochemical imbalance involving the neurotransmitters serotonin, norepinephrine, and dopamine. The cause of clinical depression is still a topic of debate, although genetics seem to play a role. But researchers in the field of type 1 has also found that hormone levels as well as the degree to which stable blood glucose is managed, plays a role in why type 1 diabetics may be more prone to develop clinical depression. A combination of medication and counseling is advised in these cases.

These two types can also be intertwined. For instance, someone with clinical depression may have their condition well under control with the right medication, but it does not mean that diabetes burnout will not affect them.

But whichever type of depression we’re talking about here, the chances of a child with type 1 being diagnosed with depression before the age of 18 is two to three times higher than for other children. That’s the conservative estimate, if one takes different studies into account.

And then there’s suicide, which, among type 1 children, are estimated to be at least twice as likely. However, like many studies suggests, accurate numbers are hard to establish, since cause of death is often misclassified as diabetes-related, rather than suicide (for example, through intentional misuse of insulin).

Additionally, according to a study published by The Lancet, suicidal ideation (from youth into adulthood) was found to be seven times higher in diabetics than that of the general public.

So how can we, as caregivers, approach this? Well, there’s a list of possible symptoms of depression here. But as someone who lives with it, I can tell you it differs from person to person – it’s as individual and ingrained as fingerprints. It may be intentionally hidden from parents or just invisible when you don’t want to see it. I don’t have answers. I guess a good place to start is having a home in which mental health is discussed openly, or going to counseling meetings together to deal with the daily stress – basically, take away the stigma and try to check in with them in a non-invasive, non-judgmental way.

Anxiety
Anxiety and depression often go hand-in-hand, and just like depression, it can be situational or clinical. Clear links have been established in numerous studies between anxiety disorders and type 1 diabetes, and there is definitely an increased risk. The incredible amount of stress a type 1 diabetic faces in their everyday life – fear of not waking up due to a hypo during the night, knowledge of the long term complications you may suffer, having to essentially carry an emergency bag with you just to go to the shop, as well as the rising cost of insulin worldwide, all compounds issues around anxiety – whether it is the situational cause, or a trigger for a pre-existing chronic condition.

But anxiety disorder and anxiety attacks should not be confused with stress. An anxiety attack is a physical response to a perceived danger that is not there. Your body goes into flight-or-flight mode, and can present as anything from hyperventilation and temporary unconsciousness, to sitting completely still with hands clasped while your mind is in a state of absolute panic and dread. Chronic anxiety can also lead you to withdraw from public life in fear of these attacks happening, and even cause physical responses like temporary loss of motor functions – for instance your hands suddenly losing mobility and dropping things.

Eating disorders
Just basic logic will tell you that a T1’s relationship with food is, well, complicated. I mean, the quote “what nourishes me, also destroys me” can sometimes literally be perceived to apply. At other times, a candy bar will save your life at 3 a.m.

But there is a very specific type of type 1 related eating disorder which many are unaware of: diabulimia.

Diabulimia occurs when a person with type 1 intentionally gives themselves less insulin and run high glucose counts in order to lose weight.

Whether they’re aware of the damage this causes to their bodies in the long run, and the fact that many end up in the hospital due to diabetic ketoacidosis – which could be fatal – is not necessarily something that will deter them. It’s also often overlooked by doctors and caregivers, since a high HBAc1 count is quite normal for someone going through puberty, due to hormonal fluctuations.

So what do we do – as caregivers, family, friends, partners or teachers? I don’t have an easy answer for that one. But we can start by being aware. By not turning away from even more unpleasant truths. By creating spaces in which our loved ones feel safe to drop the “I’m fine” mask. By taking misconceptions and judgmental attitudes about mental illnesses and putting them where they belong: in the damn trash.

And, most importantly, by talking about it.