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Diabetes Self Education & Managing Your Health Care Professional: who is driving this car?

November 28, 2013 by helwild 8 Comments

We’ve had some discussion today around the topic of Research on our Facebook group. There were lots of different opinions. Some people want to know and learn and be in control: others want to be told what to do and want someone else to be responsible. I believe in being in charge of my own health.

What about you?

The discussion made me think about some of the links we provide from time to time about current Research. I decided to follow up on some personal research about myself. I took a questionnaire which aims to check our Emotional health and wellbeing around diabetes. It has been sitting in our Forums for some time, unloved & neglected. Diabetes Counselling Online had input into this questionnaire, which was developed under the NDSS initiative of the Australian Government.

The National Diabetes Services Scheme (NDSS) is an initiative of the Australian Federal Government. If you are not already registered with the NDSS, you can access the Registration form here Registration is free for all Australians living with Diabetes and provides a range of free services.

Here is the questionnaire

It begins: “Many people with diabetes can feel weighed down with concerns about their health and wellbeing. If neglected, these feelings can end up affecting their quality of life and self-management of diabetes.

This website has been designed to help you to identify any problem areas you may have with the emotional aspects of diabetes, and to get help and information.

Using this website :

There are 24 questions to complete. It will only take a few minutes and there are no right or wrong answers.
When you finish the questions you will receive your results and be provided with feedback
You can view online resources for more advice and information.
You can print out the results to discuss with your health professional.

It was very easy to take, and it did give me things to think about in regards to how I actually feel about living with my own diabetes.

Here is my ‘results’ page:

“It is not always easy to manage diabetes. It can be unpredictable, frustrating; time consuming and at times overwhelming. Blood glucose levels can go up and down for no apparent reason despite your best efforts. People who don’t have diabetes don’t always understand the juggling act required to manage to always eat well, take tablets and insulin and constantly do blood glucose testing. Friends and family can be very supportive but sometimes their well meant advice is not always helpful and may unwittingly increase your stress.”

and

“It is common to feel annoyed, fed up and frustrated with your diabetes but if this results in you feeling that you can’t cope, you may need some help. Often a lot of energy is spent on looking after your physical health and although that is important, it is just as important to look after your emotional and mental health.”

Now that’s a pretty normal sort of statement for any organisation talking about managing diabetes, hey?

My Results report goes on:
“Be sure to scroll down for additional content. Your results indicate these areas may be a problem for you”
And then the actual issue that was revealed:
“Feelings about food”

No surprises there then. I did know I have issues around food. What Western woman over 30 doesn’t?

The issues are around guilt about taking pleasure in food, and guilt about weight, even when the weight is in normal range. What this questionnaire did for me was to highlight that basically I’m pretty OK about my diabetes, but I still get stressed about food & diabetes. It’s interesting because I know at the start of this journey I was very stressed about having to take medication. Now I know that the medication is helping me, and somehow I’m ok with it.

My other problem area is Exercise, and that didn’t show up in my results. So the questionnaire is not perfect, or doesn’t cover everything for me. But it is a great starting point.

I did do one other thing with this questionnaire. I went back and answered as though I was another person, using the kind of thinking that is often experienced by people with diabetes, the kind of thinking that various people have shared with me during counselling.

Among other interesting results, I got some very useful advice, which I want to pass on, regarding visits to the doctor.

“It is really important that you feel you are able to communicate effectively with your health professionals and that you develop a good relationship where you can discuss your goals for managing your blood glucose levels, weight and all other aspects of diabetes. Sometimes the health professional and the person with diabetes don’t have the same goals and this may cause confusion and frustration for everyone.”

“Your doctor needs to explain clearly what he/she considers the best treatment options for you; but equally you need to let your doctor know what you prefer and what is important to you. It can be difficult in a busy consultation telling the doctor everything you want him/her to know and asking all the questions you have.”

“These points might help:

If you know you will need more time ask the receptionist to make a longer appointment
Write your questions down so you don’t forget
Ask lots of questions to clarify information the doctor gives you
Ask the doctor to explain if you don’t understand.
Tell the doctor what you think is realistic for you to do
Bring a friend or family member to help you remember what has been discussed
Ask for printed information”

“If you think your doctor or heath professional’s advice is not right for you, you can ask to be referred to another or ask for a second opinion. If you do not have a good relationship with your heath professional and you can’t see it becoming much better you can see a different one. You can ask to have all your medical records transferred to the new doctor or health professional”.

“Do you and your health care professional share the same goals? To help you to be clear about your goals so you can explain them to your diabetes health care professional.

Consider the following

What changes are you prepared to make to your food and eating habits?
How much physical activity are you prepared to do?
Are you willing to take medication to control your blood glucose levels?
Are you prepared to take tablets to control your cholesterol and/or blood pressure?
How often are you prepared to check your blood glucose levels?
What is a realistic HbA1c for you?
How often do you want to see your diabetes health care professional?”

Further information is then available via live weblinks to various State Diabetes Associations.

It’s very much like being the driver of your own car, and this has been brought home to me by my elderly mother’s theory, who attributes all of her problems nearing the end of her life to her decision to give up her car.

You can read about ‘Taking Control’ elsewhere on our website, here.

This is a very comprehensive section and ends:
Most importantly, making decisions and taking control of your diabetes self management will put you in the centre of your management team.

You may also be interested in reading this article about What keeps Australians living with diabetes awake at night.

Helen Wilde

Helen is a long term Senior Counsellor with Diabetes Counselling Online, Teacher, mother of a type 1 diabetic for 34 years and a type 2 diabetic herself for 12 years.

You can get help from our team here: http://www.diabetescounselling.com.au/counselling-request/
You can also join our Chat, forums & chatline from the front page of the website.

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prejudice, judgement & bias- who me? I’m a nice person! I know all about diabetes, right? Talkin’ WDD2013 blues

November 14, 2013 by helwild 4 Comments

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.

Media, the fear factor and a call to action in diabetes

August 9, 2013 by Helen-Edwards 6 Comments

“Going blind. Getting your leg cut off. Kidneys packing up. Dying of a heart attack. The implications of being diagnosed with diabetes are shocking. Yet it seems many of us keep ignoring the alarm bells, with rates of diabetes soaring across the globe.”

These were the headlines that the lovely Renza wrote about in her blog Diabetogenic earlier in the week. “Starting an article about diabetes with a shopping list of scary complications is alarmist and pointless. There is no context offered, no explanation of what they mean, no statistics and no concern shown for those of us living with diabetes every day. It’s damaging, inconsiderate and irresponsible reporting.”said Renza. And I have to agree.

I did not read the original article at the time. I did not want to. I could tell just from reading Renza’s blog that I would be distressed and upset, even angry, if I clicked the link and had a look. But somehow, the article has taunted me the past couple of days. Yesterday showing up in my Twitter stream on SMH Lifestyle where I did give in, click the link, skim the article and quickly ran away back to the safety of my Twitter feed without really taking it all in. Other than that headline.

Late last night my lovely PR person sent me the link, saying it would be a good one to have a look at. “Ok universe” I screamed. I am supposed to read this and do something about it. So, I read it and now I also write, like Renza, in response.

The article states a lot of facts. A lot of things I agree with wholeheartedly. Diabetes is big. It is growing. It is scary and (take it from me) it is very expensive. However, in total support of Renza’s angle on this, the fear factor approach is not helpful. I know this to be true from personal experience. As a 12 year old I was told at diagnosis that I was a ticking time bomb. I was told that I would most likely end up with stuffed kidneys, go blind, quite likely lose a limb, especially if I ever dared to go barefoot, and would, most heartbreaking of all (and incorrect) never have a healthy baby.

So what do you think I did? Took notice and lived the life of a nun, a perfect diabetic (whatever that is)? Nope. At 14 I thought what the hell, if I am going down I am going down with a bang. I stopped self care. I did all the things I was told not to do, for a long time. I think this is a common story.

We know that people with diabetes (all types) have a high level of distress and depression. We know that a lot of this is due to the daily strain of managing a sometimes unmanagable condition coupled with worry and fear about the future and diabetes complications. Here at Diabetes Counselling Online we work closely with many people looking at the wellbeing of people living with diabetes. The Diabetes MILES study showed that 33 per cent of people with diabetes worry about the future and the possibility of serious complications. And as per Renza’s article, the authors say it is “consistently the foremost concern of people with diabetes”. I can confirm from a personal perspective of having spoken with literally thousands of people with diabetes and their families over the past 12 years, that this is definitely the case.

So what does a headline like that do to all the people out there who already live with diabetes?

There is a call out at the moment reminds Renza “for the Government to adopt a coordinated national diabetes strategy and fund programs to address the issues.” I would strongly add to this that there needs to be far more focus and resources sunk into mental health resources and services for people with diabetes to address these levels of distress among our community.

Professor Greg Johnson, chief executive of Diabetes Australia raises many important facts in the article such as ”sedentary lifestyles, easy access to processed food, weight gain and a multicultural society which includes people from high-risk genetic backgrounds, such as indigenous, Chinese, Indian and the Pacific islands are raising our numbers of people being diagnosed with type 2 diabetes.” This is a real concern and one that needs to heard and addressed in various ways.

Professor Johnson also raises a point that many people out there would not know, there’s no doubt weight gain is a big driver, but it doesn’t explain it all. ”There are thousands of people with type-2 diabetes who are a healthy weight and have a pretty healthy lifestyle.” he says. This may come as a shock to many who stigmatise people with type 2 diabetes as being fat and lazy. Again another community attitude and one often in the media that is a big driver of distress and guilt.

The concerns raised about children developing type 2 diabetes and the increased risks of complications for this group of young people is a growing problem and a tragedy of our times. I remember some years back discussing this problem as it slowly started to happen and knowing it would grow. Again this is something we can do something about. Education is key, not headlines which scare people into hopelessness.

The idea of a “hard-hitting approach” raised by Mike Daube, a professor of health policy at Curtin University, is not a bad one. However there needs to be sensitivity about how this is tackled and I have no problem with campaigns tackling things like sugary drinks with hard hitting messages and a bit of shock, as long as there are clear messages about the risks to health, obesity and type 2 diabetes, without the usual murky messages about “sugar” causing every type of diabetes.

Fear factor style public health campaigns may work for other health concerns such as smoking and alcohol consumption or drink driving. But we are talking about trying to do two things here as far as I can see – reach the broader community and people who are at risk of type 2 diabetes to try and prevent them developing it; and reach people living with diabetes to try and prevent them developing complications. People choose to drink and smoke. No person ever chose to have diabetes. This is where general fear factor campaigns may do more damage than good. I also commend the article for defining the types of diabetes at the end. This is often not included and is a positive move.

And finally we fully support the call for a nationally co-ordinated plan on diabetes in Australia. Diabetes Australia has released its National Diabetes Strategy and Action Plan, focusing on early detection, management and prevention. This is a must read. Please have a look and join the call for this approach so that we can ensure not just better action on prevention which is vital, but better support, services and quality of life for those of us already living with diabetes in all its forms.

Helen Edwards

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