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

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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: https://www.diabetescantstopme.com/counselling-request/
You can also join our Chat, forums & chatline from the front page of the website.

8 Comments

  1. Sue on December 5, 2013 at 2:52 pm

    “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.”
    So much more easily said than done. I have endured about 20 years of seeing inadequate Endocrinologists. Most were box-tickers who knew nothing about D irl. The last one changed the goalposts almost every visit, often diametrically opposite; never acknowledging that I’d achieved (or over-achieved) the last goal. There would also be a curve-ball every so often. When I asked that Endo for a referral to another, “who could provide constructive problem-solving support”, the answer took the form “this one sees younger t1’s, that one sees older t2’s.” In other words, none of them deal with the real person in front of them. None of them can help me sort out things I can’t sort out myself. I have asked the same question and recived the same answer from diabetes nurse educators, GP, and the state branch of Diabetes Aust. My general health has improved in the year since I saw the last Endo, but how do I find one I can work with? One who will have a positive instead of negative impact on my health?

  2. helwild on December 8, 2013 at 5:52 pm

    Hello there Sue 🙂
    Thanks so much for responding to my Blog.
    It seems you have had some experiences that you have found less than satisfactory with Health Care professionals over the past 20 years. I am sorry to hear that. 🙁 On the plus side, I hear that your general health has improved in the past year. I’m very glad to hear that, and I wonder what has happened to make you think this? What indicators do you have to make you think this?

    Before I can offer any suggestions, it would be helpful to know a little more about you and your diabetes.

    What country are you in? And what type of diabetes are you living with?

    If you would prefer to keep these details private, you can request an e consult at https://www.diabetescantstopme.com/counselling-request/
    This is a free service for all Australians & for those residing in Australia.

    Warm Regards
    Helen

  3. Sue on December 8, 2013 at 6:34 pm

    I am in Australia, and live with t1. My introductory post is here: https://www.diabetescantstopme.com/forums/topic/hello-i-guess-id-better-introduce-myself/#post-10838
    You may also be interested in my response to David’s question on that page.
    Over the last few years I had felt I was continually struggling to recover from episodes of severe instability that had followed on from following the last endo’s ideas. For some months before I stopped seeing that one, and for about 6 months after, I felt I was living on a knife-edge between hypoglycaemic unawareness and ketones. Stability has improved a bit, I have slightly improved hypo awareness, and less often feel the need to check ketones (mild nausea at <1). Some days I even have a glimpse of the wonderful stability I experienced in the first 3 years that I was using Lantus and doing DAFNE. And I no longer feel I am constantly battling curve balls from a professional who should be supportive.

  4. helwild on December 9, 2013 at 10:50 am

    Hello Sue.
    Thanks for providing all that extra personal information. 🙂
    I see from your link that you have lived with diabetes for over 50 years, since a toddler. Congratulations.:-) You seem like a very strong and determined person.

    Your words of advice to Health Care Professionals as written in reply to David in the Forum are very wise, and anyone else reading this blog and our conversation would be well advised to hop over and read it for themselves on the Link you have provided!

    You will have seen huge changes in insulin types, delivery modes, and glucose checking devices and systems over those 50 years. As the parent of a Type 1, diagnosed almost 36 years ago, I have experienced some of those changes also. From pig insulin & urine testing for both ketones & ‘sugar’ levels, to insulin pumps, synthetic human insulin, digital blood glucose meters.

    As you know, diabetes itself does change over our lifetime. I am a Diabetes counsellor rather than an educator or clinician, so I can only speak in general terms regarding insulins and detailed management. You seem to be ‘driving your own car’ of diabetes management, but it also sounds like you would like some empathetic professional assistance. There are professionals out there who will treat you with the dignity and respect you seek. If you would like more specific advice, as you are Australian, can I suggest that you contact us via the link I provided above, and request free one on one advice from one of our Diabetes Educators.

    Warm regards
    Helen Wilde

  5. Sue on December 9, 2013 at 11:51 am

    Yes, people who know me well say I’m ‘strong’ or ‘resilient’. In the 1980’s I used to have a lot of emotional turmoil about errant bgls, but eventually realised I have to deal with the bgl whether or not I do the emotional turmoil. So I turned the emotional response right down. Today’s technology and ‘management’ discourse, give us the tools and strategies to address these challenges.
    In the past, the discourse was different– you were ‘bad’ if bgls were high or ‘good’ if they were in range. ‘Control’ discourse did not give people the strategies to deal with fluctuating bgls, and you copped bad attitude from health professionals if you/your bgls were ‘bad’. It was all part of the unacknowledged psychosocial stress of living with D. Yes, there has been a lot of change and not only in the technology.
    “There are professionals out there who will treat you with the dignity and respect you seek.” I’d love to find one! Are there any in the public system? I’ve never had private health cover so am reluctant to shell out buckets of money for private. If there are any in the public system, we can continue this discussion privately.

  6. helwild on December 9, 2013 at 12:22 pm

    Hi Sue,
    Yes! There are some good professionals in the Public system. It would be best to continue the discussion with one of our Diabetes Educators (not me) privately though, as I don’t want you to pass on too many identifying details to us here, in what is essentially a Public discussion. Please contact us via the Registration form, (it’s free) https://www.diabetescantstopme.com/counselling-request/ and briefly include some info re your Forum posts with David, & yr blog chat with me, as well as your location.

    If you do not want to do that, there are some lists around by location: For example, apparently the Type 1 Diabetes Network has recommendations of health professionals, including endos, by users of the network. That is their list, we do not take any responsibility for it. 🙂
    Regards
    Helen

  7. Sue on December 9, 2013 at 12:46 pm

    Thanks Helen. I have been careful in all my posts not to reveal details that might identify me, my location or the health professionals. Most of what I have said on this website are general observations based on experiences that many would share.
    I had not heard of the Type 1 Network, will look into that.
    Cheers,
    Sue.

  8. helwild on December 9, 2013 at 1:01 pm

    excellent.
    Thanks so much for your insights, Sue, come by any time!

    cheers
    Helen.

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