By Helen Wilde
Today is World Diabetes Day, 2013. What is your wish for today? Mine is that through awareness and education, the prejudice, judgement and bias shown by media and ordinary people about those of us living daily with diabetes would come to an end. Or at least reduce. It’s also about the self education that those of us living with diabetes seek and need, to manage our diabetes well, and to deal with our own self blame.
So my wish is for Education.
I have personal experience of living with Type 1 diabetes, Type 2 diabetes and also gestational diabetes. My first darling daughter was diagnosed with Type 1 when I was 32 years old, a young mother. I was diagnosed with Type 2 at 52, and my beautiful second daughter with gestational when I was 61, and already a grandmother to 2 grandbabies from my Type 1 daughter. I have many relatives living with all types of diabetes. I have lived and breathed diabetes for 34 years. I frequently get angry or defensive when I see people with diabetes misrepresented or judged.
Nobody chooses diabetes.
Probably the biggest single judgement made is thinking ‘people cause diabetes by what they eat’. Yet many people eat indiscriminately themselves, not thinking, ‘should I eat that, it might give me diabetes’. They probably think, ‘I shouldn’t eat that, it might make me fat’, because that thought is about how we look in the mirror, not about our health.
My theory is, some of those people go on to develop diabetes, and then feel more ashamed and self blaming than they would if they understood how it all works. Sure, being overweight & not exercising & not eating a healthy diet are risk factors. But not everyone living like that will develop diabetes.
All children eat & drink sugar. All over the world. Yet only a small percentage of children develop type 1 diabetes. Those who do, need to eat sugar or glucose at times to balance their insulin intake, because it’s not a mathematical equation. People who think they know ‘all about’ diabetes, even some in the medical profession, will sometimes act as ‘experts’ and tell the Type 1 person, ‘you can’t eat that’.
Sugar does not cause diabetes. Sugar does not cause diabetes.
Read more about that here.
We are a food obsessed world. I cannot turn on my TV without coming across a cooking programme, every day. There are more restaurants & cafes in my hometown every day, including ‘pop ups’ ‘takeaways’ and ‘home deliveries’. Groceries can be ordered online and delivered to the home. We are in a time of Feasting in the Western world, alongside incredible famine in other places.
The big push for World Diabetes day this year has been about Prevention. This push is partly driven by the panic of governments world wide that the ‘epidemic’ of diabetes is threatening to be a huge financial drain on budgets.This has stirred up all kinds of guilt, anger, bias and prejudice, including within the Diabetes Community world wide.
There are some parents of children with diabetes wanting to revert to the old ‘Juvenile Diabetes’ name for Type 1 diabetes. It is true in this argument that there is as yet no way to Prevent Type 1 diabetes. However, this ignores the fact that adults are also diagnosed with Type 1, and that some people are now diagnosed with LADA,’late onset’, or type 1.5, or may have both types.
Type 2’s universally carry a heavy load of guilt, thinking ‘somehow I caused this to happen’. The implied judgement is, ‘You should have Prevented this’. It’s true that for some people with Pre diabetes, losing weight, watching their diet, & exercising will mean that they can prevent or delay their diabetes eventuating; or that for people with type 2, their diabetes will be controlled for a time (maybe a long time) without medication. It’s also true that they will probably progress through oral medication to insulin, if they live long enough. So ‘prevention’ is probably not the accurate word: it’s probably more accurate to talk about ‘delaying’; and only true about the onset of Type 2.
For all people with diabetes, the fear and risk of complications from poorly controlled diabetes is very real, and a daily battle. Prevention then can be used to mean Prevention of complications. This is the message of WDD2013 and the IDF that I would like to see people taking about, rather than the ‘prevention’ of diabetes itself. The Prevention (or delay) of Complications of diabetes.
This can be done by Educating people with diabetes, in a non judgemental way. Those of us with diabetes can be pro active in seeking self education, we are autonomous human beings, we can choose to find out what we need to know, and bring our Health care professionals, families, work colleagues and friends with us on the journey. People can be helped to manage their diabetes at an optimal level. That means, making and keeping appointments, monitoring & testing, eating, exercising & medicating. It also means looking after our Wellbeing.
These are the reasons why my wish is for ‘Education’ about diabetes; and that includes a wish that ‘Judgement’ & ‘self blame’ be removed. Who gets judged for having asthma? Motor Neurone Disease? Breast Cancer? Like many others, I have lost loved ones to all of these things. So why is diabetes different?
We are turning the World Blue for diabetes today, my wish is that this not be the ‘blues’ of Depression, up to 3 times more likely for pwd’s, but rather the blue of the blue blue skies, sunshine and optimism, the blue of Hope that insulin, oral medication, testing & monitoring, research, health care professionals, & above all Education, can bring to the whole world, one where diabetes is just one of many chronic conditions for which the sufferers are not blamed, and where everyone can be helped to live full, giving, and rich lives.
Helen was a long term Senior Counsellor with Diabetes Counselling Online and a Teacher. She is mother of a type 1 diabetic since 1979 and a type 2 diabetic herself since 2002.
A scratchy Jug Band rap from 1926 Talking Blues