Exploring the science of how T1D affects our mental health
So, how many people are affected by mental health problems because of their diabetes?
A few years ago, Diabetes UK surveyed over 8,500 diabetics across all sorts of ethnicities and demographics to try and measure the impact of diabetes on their mental health. Here’s what they found:
- 60% said that diabetes affects their mental health regularly
- 33% said that diabetes affected them or their family members from doing certain things
- 70% said that they did not feel in control of their diabetes
- 20% were using counselling and regular professional support to help them manage
How is this data relevant to you?
Well across the UK and USA there are approximately 2 Million T1Ds. That means if you’re suffering with mental health problems because of your diabetes, there are 1,200,000 other people in the same boat.
You’re not alone, it’s not your fault, and we’re all in this together – we’re stronger together. Interestingly, this data does not say whether or not respondents used continuous glucose monitors like Dexcom, Freestyle Libre, or Eversense, or pumps like Omnipod, so the figures may have decreased. These pieces of tech are known to slightly improve general mental health in users.
But what molecular mechanisms of T1D cause mental health problems?
Everything we feel, think, and experience in our brain is the outcome of a complex set of chemical signals, which we interpret and link to internal and external stimuli. For example, you walk into a shop and someone throws a lemon at you. This external stimulus causes quite a lot of neurological stimulation and you have options on how you interpret that event.
This is a critical point, remember this as you read – in that moment when that lemon is hurtling toward you like an American football you receive gigabytes of data from your eyes, ears, and proprioceptive muscles (the list is endless) and your brain is flooded with biochemical signals. It’s in this moment that you now have a choice. You can duck, take the lemon on the chin, or attempt to volley it back like Novak Djokovic.
Now, here's how T1D can change your emotions
Personality Changes
As we go about our lives responding to the world around us, we’re constantly challenged. We have stresses in our lives that play on us all the time, like debt, getting home in time for the school run, and all the things we have to do every day. On top of this we have fluctuating and often crazy blood sugars that we have to sort out. We are constantly checking our continuous glucose monitors or blood glucose meters and injecting insulin to, we hope, get us to the right blood glucose levels. Then we do it all again an hour later, and an hour after that, and it never ends.
When our sugars go too high, or too low, our brain experiences a stress response. This is because our natural state of homeostasis has been disrupted, and our brain starts to do everything possible to try and correct it. When you couple this with any dehydration, general stress levels, and daily hormonal fluctuations, you’re in nothing short of an internal fight or flight response.
This isn’t fun, so you can get angry. You can start to snap at people because you’re running on limited resources as your brain struggles to co-ordinate it’s internal efforts to correct the blood glucose imbalance (think glycogen, the liver, etc) and you struggle to prioritise the cognitive processing of someone asking you a pointless question or something. All of these tasks require action and processing from your brain, an organ which can only use glucose for energy.
So when you don’t have enough blood glucose, you can’t power your brain correctly, so you REALLY aren’t interested in other people’s silly questions – and you’ll let them know. You’ll let them know because your brain wants to ensure they don’t ask another one, and drain more of your precious resources.
Often, it’s subtle and complex things like this which underpin our simple and instinctive responses to things.
Remember – when you feel guilty because you snapped at someone who asked you what you’re having for breakfast tomorrow during a serious low, it’s not your fault. It’s an autonomic emotional reflex. Your brain has overridden any social priorities you might normally have, because it’s in distress. It’s biology, if they are offended send them to this article.
What feelings can we get from blood glucose imbalance?
Well, we’ve touched on anger and covered why and how our sugar level actually affects our emotions on a mechanistic level (albeit very briefly, believe it or not), but these are some of the feelings Healthline report.
When low you can feel:
- Confused
- Nervous
- Hungry
- Irritable
- Shaky
- Jittery
- Tired
- Sweaty
When high you can feel:
- Tense
- Angry
- Foggy
- Faint
- Thirsty
- Tired
- Nervous
- Lethargic
You can see that there is quite a lot of overlap in feelings, versus the levels of blood glucose you might be seeing on your Dexcom or Freestyle Libre. The mechanistic differences in how we get to these feelings from opposite ends of the blood glucose spectrum is FAR too complicated to touch on here, but maybe we can cover this for you in the future.
When you feel these feelings, think about that lemon hurtling towards you from earlier on. You know it’s coming, and you consciously recognise that there are options. Yes, there are emotional and autonomic barriers to some of the choice, but there is choice there.
Crucially, what this means is that we can condition ourselves to resist some of the impacts of these emotions, and try to improve our mental health ourselves. When we feel angry and irritable during a low because someone’s said something ridiculous we can do our best to halt our thoughts and try not to say anything. We can push back against that emotional reflex and urge to spare our scarce mental fuel, as described earlier.
Why would we want to do that?
Other than being a nice person, we are protecting ourselves from hurting ourselves. When we bark at someone, we feel guilty afterwards, and sometimes sad. We blame ourselves and we blame our diabetes, and we put ourselves into a spiral of self-criticism about the event. If we can stop that from happening, we can dodge this cycle and feel more positive that day. If we can’t stop this from happening, you must remember and tell yourself that it’s not your fault, because it is autonomic.
Not everyone can control every instance, but over time, with practice and recognition of the events, we can all get a little bit better.
How do these feelings affect the diabetes community?
For this question, we’ll head over to the Lancet – the worlds leading authority on scientific research and publications.
To date, the incidence of depression is about twice as high in diabetics as it is in non-diabetics, suggesting a very strong correlation between the incidence of diabetes and the incidence of depression. Of course, everybody suffers from different extents of depression and we all have degrees of anxiety and other conditions that can greatly modify, or compound, symptoms of depression.
Here you can see that there is a huge interconnected web of stimuli with incalculable possibilities of how anxiety, stress, diabetes, blood sugar, and countless other variables can affect your mental health.
This means that everyone is different, no one is the same. You are the authority on your mental health and you’re the only person with a valid perception of how it affects you.
But are you a good diabetic?
We hear this phrase a lot. It’s an infuriating, rage-inducing phrase, that does not belong in society whatsoever in any form. We could write an essay or produce a film just ranting about how flawed and inaccurate this question is.
Garrett, 2020, reports in the Lancet that less than 50% of type one diabetics DO NOT reach clinical blood glucose goals on a regular basis.
There you go, 50% of diabetics don’t achieve their time in range figures.
Besides, if being a good diabetic was a sport, it would be based on skill. Adept and laser-guided insulin timings and volumes, and all sorts of totally over the top things – not on time in target range. I can spend 85% of my time on a football field – it doesn’t make me a good footballer.
Are things going to get better in 2022?
Yes. Yes they are. Every year new technology comes out, mental health awareness improves, and we get more attuned to our bodies and their specific requirements for daily blood glucose management. Technology like the Dexcom G6, Freestyle Libre, Eversense, and Medtronic CGMs have a big impact on our mental wellbeing, and whilst they can be frustrating at times, we’d rather have them than not. As time goes on we will have access to the Freestyle Libre 3, the Dexcom G7, and many more continuous glucose monitors – one day the Freestyle Libre 4 and the Dexcom G8!
Even on the insulin delivery side of things, we have improving pump technology. The Omnipod, the T:Slim systems, and YPSO (as well as others) all help to improve our insulin delivery. Smart technology like ControlIQ even helps us manage our blood glucose with clever automations. Soon we will have access to smartpens like the FDA approved Medtronic pen, but already have fantastic Novopens to see us through every day.
We have come such a long way in the past 10 years, and the next 10 years will be even more incredible as the rate of innovation increases.
We’ve also getting access to emerging apps and technology to improve our wellbeing. Mindfulness apps, meditation apps, sleep apps, and even type one diabetic specific apps like The Diabetes App and MyDiabuddies. All of these apps help us to improve small parts of our lives and can have a significant effect when combined together.
Amy Hsieh (@type1amy), an influencer in the diabetes online community, recently launched the Diabuddies non-profit app to improve mental health in type one diabetes. Social enterprises like this are fantastic to improve the wellbeing of diabetics around the world at scale and allow diabetics to meet and talk to each other about the challenges they face. Some of us go years, even decades, without meeting another T1D, but with apps like this we can do it in minutes. Sometimes, just having someone to talk to is all you need.
Congratulations on making it this far down this very large article. Your thirst for knowledge deserves to be rewarded – please direct message us for a gift.
So what does all this mean to you? What’s the point? What can you do?
We believe we have just scientifically explained, proven, and backed up the following statements:
- Your emotions are valid and are not your fault
- You cannot prevent or influence most of the responses to a low and must not blame yourself if you upset or inconvenience, or perceive that you have done these, to your friends
- You can have a choice in how you react to your glucose fluctuations and can start to improve your mental health
- You are not alone, 60% of T1Ds suffer with mental health and 50% of T1Ds do not hit their time in range targets. Got 10,000 followers? You could have 6000 going through tough times and 5000 struggling with their daily glucose.
- We’re all in this together, and we can only help each other. The learning curve is too steep for the general public, but as a whole, the diabetic online community can be so much greater than the sum of it’s parts.
- We need to work together and support each other, as we are the only people that can truly appreciate what it’s like day by day.
- You should always be kind to others.
Thank you for reading our article and if you have any questions please contact us directly via hello@typeonestyle.com.
Sources & references below:
This information is a guide and might not be explicitly helpful for you. Your friends might be mean or a whole range of things that we, as authors, cannot possibly predict or cater for. This is a guide designed to inform and help those that are struggling with this topic and no other audience. This guide is also to help non-diabetics understand the perspective of a T1D when this question is asked. The content of this guide is NOT a reflection or inference or comparison in any way or form against your personal circumstances or your understanding of general T1D audiences and groups, or your friendship group. If you have taken offence to this guide please write in detail to hello@typeonestyle.com. We appreciate and explicitly action all constructive feedback.
2 Comments
I have had T1 diabetes for 68 years and have only realised fairly recently that I was actually fed up with it. When I told my diabetic specialist he told me it was “Diabetic burn-out!” and that was it. No help offered, no referral to any other clinician. Nothing, only that I did not qualify for a patch! It was very eye-opening for me to read your in-depth article about how I feel. Thank you so much.
Thank you – some excellent points highlighted!