Harry Edmanson, 28, from Devon, has type 1 diabetes.
Type 1 diabetes is an autoimmune condition where antibodies attack the pancreas and mean that it no longer produces the hormone insulin, which controls blood sugar levels.
It differs from type 2 diabetes, which is often associated with diet and lifestyle, which means that the body still produces insulin but it is not enough or the body has become resistant to it. This type usually occurs in people over the age of 35.
Type 1 diabetes, however, is usually diagnosed in childhood. Unlike type 2 diabetes, it does not happen because of lifestyle factors and cannot be prevented.
People with type 1 diabetes manage their condition by injecting insulin multiple times a day and learning to eat a lower sugar diet.
Speaking to Metro.co.uk for our You Don’t Look Sick series, Harry explains these misconceptions about diabetes can be very difficult to deal with.
The writer says: ‘Several times when I have told people I am diabetic they look at me and say “But you’re not fat”.
‘It infuriates me when this happens because it shows they are ignorant to the fact that there are two types of diabetes.
‘They are making assumptions about me and how I got my diabetes that are untrue, and regardless of whether I have type 1 or 2, it’s such a judgmental thing to say. I get frustrated when people think type 1 and 2 are the same disease because they aren’t.
‘Every type 1 diabetic has to take insulin and it annoys me when I know people are thinking “all he has to do is eat better”. Until there is a cure, type 1s are stuck with it.’
Harry also feels that people don’t understand how serious diabetes can be because most people manage it and lead relatively normal lives.
Without correct management, type one diabetics can suffer organ damage, go blind, limb amputation or serious illness, which can be fatal.
Harry adds: ‘I have also had a couple of times when people don’t believe how serious the disease is. Once when I said to someone diabetes is a life-threatening illness they told me it wasn’t.
‘When I pointed out that if I don’t take insulin, or take too much of it, the worst-case scenario is me dying they replied that I “wouldn’t do that”, but that doesn’t make it any less life-threatening.
‘I find a lot of people don’t realise that type 1 diabetes kills -they assume it’s just about eating well and doing some injections, they don’t appreciate the fine line we walk in controlling our blood sugars, or the consequences poor control brings.’
Harry was diagnosed when he was 13, after developing some of the typical warning signs.
He explains: ‘I was diagnosed on 24 January 2005. I started getting really thirsty and peeing a lot.
‘I remember my mum waking me on a Monday morning saying I wasn’t going to school because I had a doctor’s appointment. I was thrilled to be missing school but once we were in the car I could tell my mum was uneasy and I realised something might be wrong.
‘At the doctor’s all it took was a little finger prick to find out I had diabetes.’
The GP tested his blood sugars and found that they were abnormally high, confirming that Harry had the condition.
Symptoms of type 1 diabetes
- feeling very thirsty
- peeing more than usual, particularly at night
- feeling very tired
- losing weight without trying
- thrush that keeps coming back
- blurred vision
- cuts and grazes that aren’t healing
He adds: ‘I felt confused and scared. The doctor said I had diabetes, I had no idea what the long word meant but knew it was bad by the look on my mum’s face.
‘We were told I had to see a specialist at the hospital. In the car, I remember saying that whatever diabetes is it’s just a speed bump in the road of life and that I could take it, in hindsight I was uncharacteristically cheerful about the situation.
‘It wasn’t until I was getting weighed and my blood pressure taken that the weight of what was happening hit me when the nurse said: “Now we’ll get you a bed”.
‘It was never mentioned that I’d have to stay in hospital and that fact made me realise that what was happening was really serious. I was so scared to be left in such a miserable place away from my family.’
The next day, Harry met some of the doctors at the hospital and started to understand a little more about living with type 1 diabetes.
He says: ‘The diabetes specialist came to see me, the paediatric one was on holiday so I had the adult one.
‘He sat on the end of my bed, looked me straight in the eyes and said “If you don’t look after yourself and take your insulin properly, you will die.” That sentence has stuck with me ever since.
‘After that, I was filled with fear and confusion as the nurses explained to me what diabetes was and how to treat it.
‘It was so difficult realising that I could no longer eat and drink whatever and whenever I wanted.
‘There was so much information to take in and they said I couldn’t go home until I could do my own injections which was so terrifying because I have a phobia of needles.
‘I cried a lot in those few days. I could cope when my family were around but once they left it was awful. I felt so alone and fragile. I also remember dreading my first hypo (low blood sugars), the nurses just hadn’t described it to me properly. I was so scared I wouldn’t notice it and would drop dead.’
Now, Harry has been living with diabetes for 15 years and has learnt how to control it.
He adds: ‘On a good day it can be almost like I have nothing wrong with me but I always have to think about what I am going to eat and drink.
‘Nothing passes my lips without me thinking how will it affect my blood sugars. I count the carbohydrate content of everything I eat, which is not easy when your maths is as bad as mine.
‘I can never be truly spontaneous, if I am going to be doing a little bit more activity than I would usually, I have to account for it when doing my insulin hours before whatever it is or I run the risk of a hypo.
‘I have to test my blood before every meal, which involves pricking my finger and bleeding on a test strip.
‘A bad day can go two ways. My blood sugars could be too high, then I feel sick, groggy, my joints ache, my head really aches, I get very thirsty and have to pee a lot.
‘Or my blood sugars can go too low then I feel shaky, hungry, sweaty, weak, grumpy and I feel like I’m in a bubble that’s pulling me down and that I’m slightly removed from everything that’s going on around me.
‘The closest thing to it for a non-diabetic I can think of is if you were really hungry and were getting hangry and weak and then someone gave you a massive fright, that combination of weakness and adrenaline is like a hypo but less.’
Although Harry treats low blood sugars quickly by eating something with acting sugar like glucose tablets, it can impact him for the rest of the day.
He says: ‘After a hypo my brain goes to mush, I can’t think straight and the simplest of tasks can be too much for me to compute. Just trying to think what to have for lunch is difficult.
‘Hypos also drain me of all my energy. After one I am too tired to be able to do anything more physical than walking around the house. It is so debilitating and frustrating and stops me doing things I want and need to do.
‘After a hypo, the hopes of me getting on with my writing or doing some exercise are out the window.
‘That’s one of the worst things about the disease for me – when I have a plan to do something and then a hypo appears from nowhere and stops me.’
Harry uses an OmniPod insulin pump, which is a small device that sticks to his stomach or lower back and it delivers insulin to him. He replaces this every three days.
He adds: ‘Before the pump I had to do five injections a day, it took me some time to come around to a pump but now that I have one it has changed my life for the better. It has given me a flexibility I didn’t have before and has made my control so much better.
‘The reason my blood sugars go too high or low can be caused be so many different things. Usually, I miscalculate how much carbohydrate I eat and give myself too much or too little insulin. Other times I might do a little bit more activity than I usually do on a normal day and I’ll have a hypo.
‘I might be getting a cold or something and that will push up my bloods. Temperature affects them as well – when the weather is hot my bloods go up and when it is cold they go low.
‘Sometimes my bloods can misbehave for no apparent reason. I can do stuff one day and exactly the same the next and have completely different blood sugars.’
Harry has also started using a Freestyle Libre device, which attaches to his arm and he can scan it using a reader device or his phone to check his blood sugar.
He explains: ‘It is hugely helpful because I don’t have to test my blood all the time when I feel unwell. A quick scan tells me roughly where my bloods are and if they are going up or down. It has helped me avoid having hypos on numerous occasions, usually when I was busy and really needed not to have a hypo.’
Harry feels that it’s important to be open and to speak out about his condition to help people understand diabetes better.
He adds: ‘Talking is the key. If people aren’t told about these things they’ll never know. The more they know the better they can understand it.
‘I also feel that people with invisible illnesses should be open about their illness. There is no shame in the fact that your body has misbehaved, it’s not your fault so there should be no shame attached to it.
‘I always tell people that I have type 1 diabetes. I find it’s better than them staring at me testing my blood and not saying anything. 99% of the time people are interested and ask me loads of questions about the disease, which I am more than happy to answer.’
How to get involved with You Don't Look Sick
You Don’t Look Sick is Metro.co.uk’s weekly series that discusses invisible illness and disabilities.
If you have an invisible illness or disability and fancy taking part, please email youdontlooksick@metro.co.uk.
You’ll need to be happy to share pictures that show how your condition affects you, and have some time to have some pictures taken.
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source https://metro.co.uk/2020/01/12/dont-look-sick-people-make-many-assumptions-condition-12043334/
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