The Dark Side of the Mind - the mental side of living with diabetes

I've talked before about the complexities of having a chronic condition and mental health. As a teen, I struggled with depression. Some of it, I'm sure, was the usual teenage angst, some of it probably should have been medicated, and some of it, I can only imagine, was related to having a chronic condition. Before I get into details, the ADA has a Mental Health Provider Directory to help match people with therapists that have experience treating diabetics. I strongly encourage you to use it if you need someone to talk to. 

People talk about grieving for the loss of "normalcy" when diagnosed with a chronic disease. I, too, preach it, but because diabetes is the only normal I've ever known, part of me questions whether or not I'm even allowed to grieve for something that I never had. Intellectually, I know I'm entitled to feel resentment and sorrow about the things that were denied me as a result of this disease; My life has been very different than most people's, and my diabetes is a large contributing factor to that. But when I went to therapy for my depression, I can't recall the role my diabetes played ever coming up. Looking back, I think at least one of my suicide attempts was a direct result of a feeling of helplessness and complete and utter lack of control over my body and its response to the world around me. I can't help but wonder if talking to a therapist who specialised in chronic conditions (or diabetes) would have helped me develop better coping mechanisms.

I am not alone in my battles with the mental health side of diabetes. My friend Kenneth also struggled growing up. He was able to lie about his health, miss injections, sneak food, and falsify logbooks. By the time his parents found out what was happening (which took a huge amount of effort on their part), they had to take him to the hospital for a DKA episode. Looking back, he thinks the reason he wanted to hide his struggles was a combination of guilt and depression, both of which can be helped by early identification and intervention. As we've talked, he's commented that he thinks therapy would have been beneficial, even though he wouldn't have wanted to do it at the time; it would have helped him understand that his parents were struggling as much or more than he was, and made it easier to understand their reactions.  

So what I've attempted to do here is break down some of the mental health stuff that we grapple with again and again. Some of it is pretty dark, all of it is based on personal experience (be it mine or someone I know), and a lot of it is uncomfortable. I am more than happy to talk about part or all of this with you, and point you in the direction of more information or help if I can. Because there is no way to sugarcoat it – diabetes is a bitch. And of course, before diving in I must state that I am not a medical professional and these are my thoughts, research, and personal experiences, not actual medical advice. While many of the terms (including diabetic distress and burnout) lack clear-cut diagnostic criteria, they are legitimate medical conditions and should be treated as such. Please refer back to the ADA resources listed above or talk to your medical provider.

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Control (or lack thereof) - Management vs. Survival

At one point, my parents took the entire family to a child psychiatrist. Because I was... difficult (Mom's word, not mine. Also absolutely true). At the end of the session, the psychiatrist asked my parents if they could learn to enjoy the chaos. They looked at each other and thought he was insane. Fast-forward to the present day and my parents agree that that response was not useful. But over the years, they learned to appreciate the validity of the comment – you can't control the diabetes and the kids, but if you can embrace the chaos, enjoy the ride, and smooth the bumps the best you can to have the best outcome possible. Keep in mind, it took them many years to realize the validity of the theory. You can't control it, so make it work. 

As a diabetic, the lack of control you exercise over your life is staggering. I rebel against the narrative that you "manage" this disease, because management implies that you can find a regiment that keeps things in check. But one of the "joys" of diabetes is that you can do the same thing every day and get different results. You don't have control over every minutia; you may do everything right and have a routine that works most of the time but you're still going to have bad days and you cannot prevent them.  

It's devastating when you realize that you will never win. You cannot beat a chronic condition when your own immune system is out to get you. I don't know if it's even worth trying, because your quality of life will diminish. We all have enough to deal with as human beings, be it life, relationships, jobs, school... it all builds on itself. We get sick (the regular kind), and we have all the regular mental struggles, in addition to managing a disease that does not play by any set of rules but its own. 

When I say you don't manage diabetes, you survive it, what I mean is that you are always half a step behind. I'll adjust my life, my packing, and my plans based on how my body is doing that day. Runs get shortened, hikes get aborted, lawn work delayed, and long drives cancelled because my body will not cooperate. Diabetes forces you to adjust and manage and be flexible, and if you cannot or will not bend to the whims of your disease, your mental health will suffer. And anyone who tells you otherwise is selling something. 

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Guilt

There are a lot of vicious cycles with diabetes, but guilt is one of the hardest to overcome. I've struggled with it on and off for years, despite knowing that nothing I did caused this disease. I know my mom struggles with guilt, wondering if there was something they could have done differently, if there was some unknown environmental trigger that caused my younger sister to be diagnosed a year after I was, and my older sister 14 years later. The unfounded guilt is probably the most difficult cycle for Kenneth. He still struggles with it today, but has learned over time that in any non-emergency situation, it's best to work on the immediate problem in isolation from everything else and then only later (like, the next day) talk about what happened and what can be done to prevent that kind of situation from happening again. Even today, I feel guilty for the impact my disease has on my husband and the activities we do, to the extent that sometimes I make up excuses to bow out of activities so I won't hold him back. I feel guilty for feeling guilty, and for having insurance that actually covers my supplies, and a support system that is amazing... there is nothing rational about it, and trust me, I know that. But the guilt is often a precursor to other, darker emotions, up to and including burnout and diabetic distress.

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Burnout

Even diabetics who experience burnout struggle with feeling like their experience isn't "bad enough" to be worthy of comment. While we hear stories of people experiencing burnout and not checking their BGL for months, running infusion sites until they get infected, and not bolusing for food at all, there are just as many people who experience burnout and test once a day instead of five times, stop eating food with carbs because they don't want to take insulin, and don't bother to correct because why bother. We are all at different places in our lives, and what qualifies as burnout for one person at this moment is very likely going to be different than what qualified as burnout for them two years ago. But a common thread in diabetics experiencing burnout is an increase in negative feelings towards their diabetes. Anger, frustration, depression... managing this disease day in and day out, it is often easier to ignore how hard it is, and many of us have a tendency to let the struggles accumulate until they are all we can see.

Overcoming burnout is challenging, but the following steps can help:

- Set small, achievable, and measurable goals

- Adjust and manage your expectations – don’t expect yourself to be perfect, and don’t compare yourself to other diabetics

- Seek out support and ask for help

- Don’t let perfect be the enemy of good – there is no such thing as perfect diabetes management, and “good enough” keeps you out of the hospital and lets you live your life.

Like diabetic distress, burnout happens and is not your fault. Many people experience burnout that lasts months to years, but that does not make them a “bad diabetic” or ensure they will have complications. Remember that diabetes is a full-time job that has to be balanced with life. Finding a workable balance, even if it means decreasing your time in range, is critical for your mental and physical well-being.

So if you take nothing else away from this blog, please make it this:

All burnout counts. It may run a spectrum, but it's all valid. Everyone different and what we define as "not dealing with it" varies. Don't use other people as a benchmark to judge your success. Don't let perfect be the enemy of good. If all you can handle right now is the bare minimum, you are still winning.    

 

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Depression

Here's the thing (and I debated even talking about this here, but decided that it's worth the discussion, despite the topic. This is gonna be a lot, so feel free to skip over it):

Diabetics have increased rates of depression and suicidal thoughts. And at some point, be it a result of burnout, feeling beat down, or a spiraling depression cycle (because don't kid yourself, there's a vicious, self-perpetuating cycle where you hate being diabetic, hate feeling like you're not normal, that you have to do all this extra stuff to stay alive, that this disease is going to control your entire life anyway so why should you bother?), its not uncommon for diabetics to realize that it would be so easy to just take a big dose of insulin and no food. To be very, very clear, this is a bad idea and I hope you seek out someone to talk to if you're in that kind of place. But even with diabetes, our livers dump glycogen into our bloodstreams in an attempt to combat the hypoglycemia, so, while you may have a diabetic seizure from the low blood sugar, you often pull through. Our bodies want to keep us alive. 

Both Kenneth and I (and many other long-term diabetics I've talked to) at some point took large amounts of insulin in an attempt to find an easy out. Our reasons may have varied, but both of us were struggling with depression. He was going through extreme diabetic burnout, and I was (inappropriately) responding to an external event. I wound up in the hospital after having a hypoglycaemic seizure, and the doctors pretty much went "oh, too much insulin. We know what happened, blame the diabetes," and called it good. Nobody thought to ask how I had managed to take double my daily insulin dose (and I was on a pump at the time, so they definitely could see that I had) and neglected to treat it. Keep in mind, this required three separate doses because of the maximum bolus limit on my pump. Let alone why I had done it at night, when the odds of someone finding me were lower. At no point did anyone stop and go, "I wonder if something else is going on?" The reality, unfortunately, was that I had been assaulted and didn't feel like I was able to cope with it – in fact, it took another 7 years before I told anyone about it. 

The problem many of us run into again and again is that doctors try to blame everything on the diabetes. Weight gain? Diabetes. Fatigue and migraines? Diabetes. Seizures? Diabetes, definitely not epilepsy. It seems like it takes much longer than it should to diagnose other conditions when you already have a chronic condition because first you have to convince everybody that it's not the diabetes. 

So yes. Depression, regardless of its roots, is alive and well in the diabetic community. 

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To quote another life-long diabetic friend, Sam, diabetes is not a disease of the weak willed. You have to be constantly aware of yourself and your environment. 

Burnout and feelings of depression and negativity related to diabetes is not rare in any form. Having to monitor everything you eat, every action you take, how much medicine you take and when, what you plan to do that day, etc. is exhausting. Add in the normalities of life like going to the store, going to work/school, going even to friends houses can be an extremely arduous adventure. You are constantly monitoring yourself 24/7 just in case you miscalculate something. Diabetics make hundreds of small decisions every day related to managing this disease, and it's exhausting. 

But we do it because really, there isn't another option. We do it because this is our reality. We do it because living with a chronic condition toughens you and makes you grow in unexpected ways. 

So for all those who stumble across this blog in search of validation or support, just remember: we are stronger than this disease and we will survive it. 

But also, diabetes can go fuck itself.