Mike on the mental load of managing type 1 diabetes

7 min

I started experiencing symptoms when I was 18, around schoolies. Over a few months, I lost a heap of weight rapidly. I’d wake up in the morning with a really dry mouth, full of blood. I needed to pee a lot — it was nonstop. When I went to uni, I was always leaving class. I was drinking insane amounts of water. My mum suspected what it was and gave me this book, opened on a page about diabetes. I read it and I was like, “Fuck.” It was quite obvious that’s what it was. And she said, “I think you need to go to the doctor.”

The doctor was pretty relaxed about my symptoms but sent me for a blood test. I was at uni the next day when the doctor called me and said, “You have type 1 diabetes; you need to get straight to the hospital.” All of a sudden it was just go, go, go. I was in shock. When I was admitted to the hospital, my blood sugar was 32mmol/L. A normal level is between 3.9mmol/L and 5.6mmol/L. When they got it under control I had to stay for a week to learn how to live with type 1 diabetes, how to test my blood sugar, use insulin, what I needed to eat and when.

I was pretty upset. I had just finished school, when everyone was going out and having fun and I just thought, “I can’t do any of this.” It also set off a huge chain reaction of hypochondria, which took a long time to get over. The fact that I ignored something for too long, that was so serious. It was at the point where I’d get a little neck ache and I’m like, “Oh, this could be a brain tumour.” And then I would convince myself I had a brain tumour. It set off anxiety that I’d never experienced in my life and panic attacks that put me in the hospital. It was really bad for a few years. I was just a nervous wreck about everything. I’d sit on the internet all day typing in symptoms until they matched up with what I had and then convincing myself I was terminally ill. That took about five years to deal with. It really put a pause on my life and made me scared to do a lot of things.

At the start, diabetes is a huge mental load because you’re completely responsible for anything you’re putting in your body. Whereas when you’re not a diabetic teenager, you just put things in your body and you don’t take any mental note of what it’s doing or how it’s affecting you. Then all of a sudden you’re eating a piece of bread and you’re like, “Oh, how many carbs is this? How much insulin do I need to take? What will my sugar be in two hours?” It is really difficult at the start. And explaining it to other people is challenging too.

When I first had to test my sugar and inject insulin in public I was super embarrassed. I was very aware when people were staring at me and was really affected by people’s ignorant reactions. Obviously, if you’re putting a needle into you, people are like, “What the hell, is that guy shooting up or something?” But I really couldn’t care less anymore, I think that just comes with growing up.

“I was at uni the next day when the doctor called me and said, “You have type 1 diabetes; you need to get straight to the hospital.” All of a sudden it was just go, go, go. I was in shock.”

It was also hard dealing with the stigma associated with diabetes when I was younger. There’s the idea that people with diabetes are overweight and all of the jokes that come with it. I didn’t really understand that there were two types of diabetes before I was diagnosed and many people don’t. People just go, “Oh, you’re skinny; why are you diabetic?” And just, “Should you eat that piece of cake? You’re diabetic”, and it’s just not at all what it’s about. I think everyone should be more aware of diabetes, the different types, that one can’t be cured and even the symptoms of hypoglycaemia (a hypo) which is when your blood sugar is dangerously low. It can happen to any diabetic at any time and can potentially end that person’s life.

I’ve had really good experiences with my doctors and specialists. The best source of information for me was my diabetic educator because they’re just giving it to you in black and white. You need to hear — if you don’t look after this, this is what’s going to happen. I can either take control of this and live a life that is healthy. Otherwise, I’m going to end up with eyesight issues, cardiovascular disease and foot problems. And that’s as simple as it was put to me. I’m interested in my health and didn’t mind learning more about food and exercise and what I could do to help myself. I went very hardline on my diet straight away, going vegetarian for a few years, and gave up drinking. Around my mid-20s I started to relax a bit more about it. Now I do everything I want to, with a bit of planning, like travelling to some amazing places and living overseas for a few years. 

Meeting some other people with type 1 diabetes terrified me. All of them have not been keeping their diabetes under control, and unfortunately, some of these people are experiencing really bad side effects. There are so many people living with chronic illnesses who aren’t educating themselves about their health and doing something about it. Some people, particularly older men I’ve met, can be so stubborn. In the face of something that could end their life, they just do not change.

Now, I honestly just don’t really think about having diabetes that much. I’ve had a couple of scares that can be a worry, but day to day I don’t think about it. My advice to anyone who has just been diagnosed would be to really take a step back, take a deep breath and get yourself educated on your health and what you can do to manage it.

I think the quicker you learn that things are going to be ok – if you can get your head around what you’re dealing with – the quicker life can have some normality to it. It helps reading other people’s stories and experiences and even connecting with other people you can bounce questions off. I think the thoughts of ‘Well, I’ve been eating this my whole life’ or ‘I don’t really enjoy exercise’ have to be scrubbed from your mind. You can live a very happy, normal life if you stay on top of your health, but if you let it slip, it only gets harder and harder, and there is a point of no return, unfortunately. You must take an interest in your health for diabetes to have a minimal effect on your life, it’s really that simple. You just need to live a balanced, healthy lifestyle, and that certainly doesn’t mean no cake ever again.


Mental health

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