Living with a diagnosis of Type 1 Diabetes

Jo Johnson

Consultant Neuropsychologist

 

You can develop Diabetes type 1 at any age but it is usually diagnosed between 9 and 14 years.

Here are the accounts of how four young people found out they have diabetes and their thoughts and feelings about what happened and how they cope.

Katie 13

I started getting symptoms of diabetes in year 6. It all happened very quickly, at first I was unusually tired. Me and my parents just thought it was because I was growing. I couldn’t drink water and started being sick. I got so ill I ended up going to hospital in an ambulance. Once I was diagnosed I got better so quickly and went home 4 days later. I’m on an insulin pump right now and its working well for me. I found it hard to adapt to first, but now its just a normal part of everyday life. I don’t find it nice having diabetes but its bearable and I have some good nurses to support me.

Kaaren 16

I was diagnosed with Diabetes type 1 when I was 14, I was a christian and I thought this would protect me and I was upset and angry that something so bad could happen to me. My parents were also really sad. For a while I didn’t pray as I felt angry with God too. When I started talking to Christian friends and my youth worker I realised bad things happen to everyone and the bible doesn’t say that Christians will only have good things happen. My mum says that having diabetes makes me a kinder and more patient person.

Kirstie 15

I was 8 years old when I was told I had diabetes. I became really ill after a virus. I was rushed to hospital and became unconscious. I remained in the hospital’s intensive care unit for 5 days whilst they sorted out my insulin regime and taught me how to inject.  Hearing that I was diabetic and was dependent on insulin injections was a shock for me to hear, especially as an 8 year old who wanted to have a fun, not have to worry about needles. It made me upset and made me wonder what I had done to deserve this and why I was the abnormal child.

As I became a teenager, I found it more difficult to deal with the emotional impacts of having diabetes on top of the typical teenage mood swings. I felt as if I was an outsider. I saw them eating sweets after school and doing what they wanted whilst I was having to test levels and take insulin. I felt different as I always have to take a bag with me with all my insulin related things. I had lots of negative thoughts about not having fun or being normal and this started to make me feel low and a sense of hatred towards my diabetes. I started seeing a counsellor and learnt ways to manage these thoughts and to notice the positive parts of my life.

I am now on an insulin pump which means that I don’t have to have injections and carry around an injection pen. A pump is a pager sized machine which has my hourly insulin rates programmed into it (these are worked out by my diabetic team). It makes having diabetes feel easier to have. Being a child or teenager with Diabetes isn’t an easy task and does change your life but it helps if you talk to people about it and you soon get used to it and it becomes normal for you.

Tom 14 

When I was 6 I was really thirsty one night and my dad tested my blood sugars (as he is diabetic). I was really high so I went to the G.P. and she diagnosed me with Type 1 Diabetes. We had to go to the hospital and I didn’t know what is was all about then.

Over the course of 6 1/2 years I’ve experienced constant highs and lows and sometimes it has felt really scary but now I manage it like I’ve always had it. Recently I went to Italy for a skiing trip for a week where I had to manage it all by myself and managed it so well blood sugars remained near perfect the whole time.

What is Type 1 diabetes?

In most people’s bodies a hormone (chemical messenger) called insulin is made by the pancreas. The pancreas is quite a small part of the body, about the length of a large sausage. It is behind the stomach. When someone eats carbohydrates ( I expect you have heard about those at school?) the body breaks them down into glucose or sugar. Insulin moves the glucose to the cells of the body so that it can do all the things it needs to in life like move, eat, listen to music and sleep.

If you have diabetes, the body doesn’t work as well as it should and it destroys its own insulin making cells. When the body works against itself like this it is described as having an autoimmune problem. Diabetes is an autoimmune condition and people that have it don’t produce insulin. If you don’t produce insulin the glucose can’t get to the cells that need it and builds up in the blood. This makes people feel tired and weak, get very thirsty, need to wee more than usual and lose weight even though they are eating the same as other people. If you have diabetes type 1 you will need to inject insulin or get it from an insulin pump. If you want to know more about this you can look it up on one of the websites at the end of this article. If you have been diagnosed you will probably be referred to a diabetic team who will give you lots of information and support so you can do the same things as other people even though you have diabetes.

“My head is spinning with lots of bad thoughts and feelings”

As Katie, Kaaren, Kirstie and Tom describe, it is usually a horrible shock when you find out you have diabetes. It is also upsetting and scary for your family and friends. For the first few months after you have been diagnosed you will probably have many different thoughts and feelings rushing round your head and body. Everyone is different, some people feel really glad that the reason they have been feeling ill has been discovered, lots of children feel frightened, angry and upset and have lots of questions about how diabetes will change their life.

Young people often get a diagnosis at the age when they are having to cope with lots of other changes in their life. You may be going through puberty, changing schools, coping with homework, exams and all the problems that can come with teenage friendships. It probably seems very unfair to also have to cope with diabetes on top of everything else.

The good news is that there are plenty of nurses and doctors who know a lot about the condition and will explain it to you and your family as many times as you need. Most young people soon get used to the idea that they have diabetes and become real experts at managing the condition and explaining it to others. Once you have got used to your symptoms and knowing when you need your insulin you will be able to do nearly all the things that your friends can do, you just have to plan things a bit better than they do.

“Is it my fault?”

When bad things happen, young people often  blame themselves and think that they have diabetes because of something they have done, that it is somehow their fault. It is important you realise that there is nothing you or your family have done to give you diabetes.

The scientists that are researching the condition still don’t know why some people get it. We have no control over what we look like or our personality strengths and weaknesses and it is the same with diabetes, you don’t have any control over whether you get it or not.

People often get diabetes type 1 muddled up with type 2. Type 2 can develop if you eat the wrong foods all the time or don’t ever exercise. Your friends might think this is true for you as well. Many young people get fed up with having to explain to people how the two types of diabetes are different, the more people you help understand, the easier it will be for other young people who are diagnosed.

If you are a Christian you might wonder if God is some how punishing you or is angry with you. God is a loving father and this is not how the God of the bible acts towards those who put their faith in him.

“Do I look different?”

When young people are told they are diabetic they often worry that others will know they are different just by looking at them. This is not true, you don’t look different to anybody else and no one will know you have diabetes unless you tell them or show them how you get insulin. You can choose to tell people or keep it as a private thing. Most people choose to tell their closest friends, one or two teachers and some family members so they can give you support but who you tell is totally up to you.

“Why me?”

Being told you have diabetes is upsetting and it is normal to wonder why it’s happened to you. if you are a Christian its reasonable to ask why has God allowed this to happen to me.

The bible makes It clear that human beings were created as different to animals. Humans have emotions and when bad things happen to us or people we love, we feel lots of negative emotions like sadness, anger and confusion. Christian young people experience these emotions too and it is not a sin to feel like this.

The eighteenth book in the bible  is about a  man called Job, that’s why it’s called the book of Job! Job has a lot to cope with, lots of bad things happen to him and his family and even his best friends were pretty useless and said mean things to him. Why don’t you read the book of Job and see how he has good reason to feel very sad, lonely and even angry about what is going on in his life?

If we look closely at the book of Job we find out some important things about how as Christians we can understand why bad things happen to us and also how to cope.

  • Diabetes is not a punishment from God. The bible says Job was a good man who did what was right in God’s eyes. Job 1:1 says

“In the land of Uz there lived a man whose name was Job. This man was blameless and upright; he feared God and shunned evil”.

  • So when bad things happen to people it’s not because God is cross with them or is trying to punish them.
  • God doesn’t blame us for feeling upset or for telling people we feel bad. Job 3: 24-26 says

“For sighing has become my daily food; my groans pour out like water. What I feared has come upon me; what I dreaded has happened to me. I have no peace, no quietness; I have no rest, but only turmoil.”

  • It is pretty clear Job feels miserable and doesn’t feel he has to hide his feelings. God doesn’t ask us to pretend we are happy when we are not or to hide how we feel from him or others. There are lots of passages in the bible that show us how to tell God about all of our problems, check out some of the psalms to see lots of examples.
  • You don’t have diabetes because you have sinned. When Adam disobeyed God, sin came into the human race. Every person that has been born since Adam (that includes you and me) is born a sinner, it’s a genetic condition which is why we all find it easy to do wrong things. (read Genesis 1 – 5). So when sin came into the world, everything got messed up. The world was messed up and humans are born with bodies and minds that get sick. So that’s why diabetes and other illnesses exist because sin came into the world and it is no longer how God wanted it to be BUT you don’t have diabetes because of anything you have done wrong. Does that make sense?

 

I expect you are wondering why you have diabetes if it is not your fault or due to sin, why does God allow bad things to happen to Christians. That is a reasonable question.

The sixth book of the New Testament is Romans and chapter 8:28 says this:

“And we know that in ALL things God works for the good of those who love him….”

 

THIS MEANS that if people love God then everything that happens in their lives works out for their good. God wants us to be the best that we can be and if we have trusted him with our lives he is always working things out to make us into people who are more like Jesus. When this verse says ALL things, this includes diabetes even though that is hard to get your head around.

Sometimes we might be able to see how God is using our suffering. Perhaps your non Christian friends might notice you still trust God or it might make you appreciate things more or bring you closer to your family. However, often we can’t work out why God is allowing bad stuff to happen and we just have to ask him to show us how to trust him even when we feel bad.

At the end of the book of Job, Job trusts God more than ever and that is often true for us. When bad things happen and we don’t understand why, if we ask God for help, he will give it to us and we will then see how trustworthy he is and that will make us stronger Christians. Ask older Christian people about how they have coped when life has been tough and how God helped them during those times.

Becoming a Christian means you believe the facts of the bible, that God created the world and that because of sin, Jesus had to be born, live a perfect life and then die as a sacrifice for you and I on the cross. We have faith in these facts and we can trust the bible as the word of God which tells us that if we say sorry for what we have done, (I John 1:9) we will be saved.

As Christians we can trust these facts, that is what we are putting our faith in. We don’t have faith in our feelings so when you feel bad because of your diabetes it doesn’t change the facts of the gospel. We have to be careful not to believe our thoughts and feelings as if they are true, they are often not. So if you feel guilty or that you are being punished or that God doesn’t love you, that doesn’t mean you are guilty or being punished. Does that make sense?

If you don’t believe me try this: close your eyes and say to yourself “I am turning green”. Now open your eyes and check your colour. See thoughts are just words in your head, often lies, we can’t trust them but we can trust what God has said in his word, the bible and we can trust what Jesus did on the cross.

If you look again in the book of Romans 5: 3-5 it says that suffering changes our characters in a good way and that we won’t be disappointed by what God does in our lives.

You might feel very lonely and at the moment because you have a condition that your friends don’t have but as a Christian you are never alone, when you become a Christian the Holy Spirit comes to live inside of you. Another word for the Holy Spirit is counselor, it is like you have your own personal comforter with you at all times. How cool is that? So remember feelings can’t be trusted and even if you feel alone, you are not and even if your friends let you down and don’t understand, the bible tells us God understands you and what you need and will never leave you alone.

Here are just a few things to help when you feel worried or upset about your diagnosis. 

  • Talk to people, friends you can trust, family, youth leader or write in a journal. Thoughts and feelings are hardest to cope with when we keep them in our heads. It’s a bit like the story of the wizard of Oz, he had a very loud scary voice and seemed very big and frightening but when the curtain was pulled back he was just a sad, small old man. This is a bit like our bad thoughts and feelings, when they stay in our heads and we try to ignore them they seem too scary and loud but when we tell others or write them down, they shrink and seem manageable.
  • Notice your thinking.The eleventh book in the New Testament is Philippians and in chapter 4:8 It says:

“Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable–if anything is excellent or praiseworthy–think about such things.”

  • God knows that our messed up heads are like naughty children and they like to wander around thinking about what they like. Try and notice when your mind is wandering about in a bad way and thinking about why you have diabetes and wondering what will happen in the future. Remind your mind it is not a tardis and needs to concentrate on what you are doing. The more you practice this the better you will get at not getting distracted by thoughts that are scaring you.
  • Get to know yourself better. I really like detective programmes, the police have to gather lots of detail about what has happened in order to catch the individual. Keep a journal about what happens in your life, what you eat, drink, who you spend time with and what you do. You will soon be able to see patterns about what makes your mind or body feel better or worse. This will help you manage your diabetes and make sure it feels as small as possible.
  • And finally: If you open your bible in the middle, you will probably find the book of Psalms, if you turn forward a few pages you will come to the book of Isaiah. I really like Isaiah chapter 41:3, it says this:

“I am the Lord your God who takes hold of your right hand and says do not fear, I will help you.’

  • Close your eyes for a few minutes and picture what is being said here. It doesn’t say you won’t have things that frighten you but it says when you feel afraid, God will be there holding your hand and if you let him he will help you with whatever happens.

 

For more information about diabetes type 1, check out these websites:

JDRF: https://jdrf.org.uk/

Diabetes UK: https://www.diabetes.org.uk/

I think I am a bit childish but I really like this cartoon video clip about what is diabetes type 1. https://www.diabetes.org.uk/Guide-to-diabetes/Kids/What-is-diabetes/What-is-Type-1-diabetes/

 

I hope this article has been of some help to you, if you would like to contact Jo, you can do so here