Diabetes: explain it in user-friendly language. That’s my job. The first bit of news isn’t so friendly. Diabetes is a chronic condition, it’ll be the thing that probably kills you. But there are many things you can do. You want to get rid of that label. Stop putting that label DIABETIC on your forehead. We put you right back into the middle of your peer group. We do that but we keep you safe.
What are the myths? People say that it’s a disease that stops you eating sugar. People say they ‘fall over’ with it – they actually go unconscious and then fall. There’s a myth that you can’t eat bananas or grapes, that’s a misnomer. People can eat anything they want in moderation. We say: eat a handful size. The main myth is that someone who has diabetes is insulin dependent.
In hospital, 10% of people will have diabetes. Most people here in Stockport will know someone who has diabetes. These people will get injections in later life. Nowadays we’re proactive with medicine. People with diabetes are one of the best looked-after groups in the country. We deal with people as a team of doctors, nurses, dieticians, podiatrists, and we bring in other specialists. Our job is to allay fears. Reassurance.
I have Type 1 Diabetes, was seven years old when I was diagnosed. I’ve done all the things you do when being a manic teenager. That’s what I tell the youngsters – you can still have your life. For the older generation, it’s explaining that they can still operate quite normally. Fit the diabetes around your lifestyle.
Type 2 Diabetes will be treated with lifestyle measures and tablets, a whole menagerie of tablets, and insulin injection too. People think its bad because it’s an injection. Think it’s worse than it is – associate it with hypoglycaemia and weight gain and sticking a shard of metal into wherever. They expect an injection to be something big and medical Hattie Jakes would use. But our needles are tiny, we don’t inject insulin into veins.
We have the grieving – a recognised circle of feeling. Anger, denial, acceptance. Most people accept it and get on with it. But denial (‘I’ll eat what I want’) and anger are part of the circle and will continually come round. If you have had things taken away from you – like chocolate – you will feel anger sooner or later.
For instance, if you are on insulin you can no longer drive certain vehicles. We negotiate medication with bus and taxi drivers. They fear, ‘My god I’m going to lose my job.’ Self-help groups are excellent for dealing with these fears, they have a massive input. There’s a lot of support – it’s actually very costly – 8% of the NHS budget goes on diabetes.
I can remember my first injection, I sat on the Sister’s knee and did it. Fantastic, look at me! I self-injected for a week. Then I reacted – ‘I don’t want to do it anymore!’ That was my circle of grief, coming round the first time.
We’re getting better at treating it, but it’s getting more prevalent. Firstly because we screen more aggressively. Secondly, we’re all getting fatter through lack of exercise. Diabetes isn’t just something that’s restricted to older people. The kids are getting adult onset diabetes earlier, because they’re not exercising.
The patients are not being blamed, but we are trying to put in place things to increase exercise and improve diet. Diabetes is an easy thing to deal with, but to encourage patients to go with your suggestions is easier said than done. For example, smoking and diabetes go hand in hand, smoking makes you many times worse and vulnerable. How do you stop the bad habits? People who are motivated will flip out of that at some point. Who finds it hard to cope with the restrictions? The people who don’t cope is everybody – it’s just the length of time that they opt out of the diabetic system that alters with the individual.
I know someone who was a bad lad – a lot of naughty habits - didn’t make any allowance at all for being diabetic. Complete denial. Now he’s got holes in his feet and he’s at risk of amputation – and he’s the most responsible patient you could meet.
When I was younger, I went travelling. I was in Yugoslavia at a railway station and I needed to inject. I went to the ticket office to ask if there was somewhere I could do it, but they didn’t understand me. I didn’t speak their language. Eventually, I injected on the platform. Looked up and there was a circle of gun muzzles around me. They arrested me – and I was saying ‘I’ve got to eat something in half an hour!’ It was three and a half hours before the interpreter came and I was in a bad way by then. Travelling was a risk, but it was calculated. Fit the diabetes around your lifestyle.
For the rest of your life you go around the circle – anger, denial, acceptance. For most of your life we hope you’ll stay in the acceptance stage. Encouragement, support, good pharmaceuticals – that’s what people need and what we try to provide.
Research is key – improvement in diet, lifestyle, drugs, machinery to test blood and so on. Insulin has only been extractable since 1922. Before that, if you had Type 1 Diabetes you were dead. We treat it as a whole team: doctor, nurse, dietician, physiotherapist, wheelchair exercise people… It’s not just in every part of the body, it’s in the head. It’s global. A big, big jigsaw of attitudes. You have to take it apart and put it back together again.
The best patients take on information bit by bit, they’re prepared to wait. Ongoing diseases go on. The information, the research, changes. You can’t expect to have this information immediately, you have to be patient. People who have the time and resources to learn about it deal best with diabetes. The patients need patience to listen. But the care staff need patience to listen to the patients!
When I was diabetic as a kid I got given five needles a week. My dad was an engineer and used to sharpen them for me. My mum would boil the syringes on Sunday. I can still smell the surgical spirit.
Fraser Burton was interviewed by Lois Blackburn and Philip Davenport
from my sketchbook, 'Phantom Pain' © Lois Blackburn 2010. (Of course the Phantom Pain in question would be felt in the missing leg, not as illustrated here- in the existing leg!)
