You Can’t Eat That!

Guest Post David Mapletoft, Diabetes Educator

People around us are generally helpful, caring and concerned. But what do you say when people make mistakes about diabetes management?

On a social media post recently Gwen commented: “Frustrated after a conversation with co-worker today who told me I didn’t need a diabetes dog I just need to take better care of myself so I don’t get highs and lows. If she knew a thing about diabetes it would be different. Also says my spouse does not need to know more it’s my responsibility. Had to walk away!!”

How would you manage this conversation?

Might you try saying something like: “How about you come over to dinner sometime, let sit down and eat together. We can then talk about the things I need to consider just to enjoy a meal with a friend”.

Or hand them a copy of the “Ten Commandments for Avoiding Negative Scenes with Diabetic Loved Ones” by Richard Rubin

  1. Thou shalt not act like a Police person.
  2. Thou shalt not ignore diabetes.
  3. Thou shalt not lead your loved one in the paths of temptation.
  4. Thou shalt not criticise when your loved one succumbs to temptation.
  5. Thou shalt not talk about your loved one’s diabetes in public unless invited to do so.
  6. Thou shalt offer support and comfort, especially when things aren’t going well with the diabetes.
  7. Thou shalt have the patience of a Saint when your loved one is acutely hypo- or hyperglycaemic.
  8. Thou shalt deal constructively with your own natural fears and resentments.
  9. Thou shalt be especially sensitive in public situations
  10. Thou shalt find out what works and do it

I asked people in our community what they would say

Marys’ response was: “I would be frustrated too. But this would be a good time to educate your coworker a bit.”

Jane said: “this would get me mad as well because your husband needs to know about your condition. I bet she hasn’t got diabetes.  It’s got my goat up just reading about it.  My husband got one at his workplace.  This foreign guy was drunk, went to work and got caught sleeping on he job.  He says he’s got diabetes.  We don’t believe him.  I’ve got diabetes and people like these people who say they got it make me so mad.”

June said: “I would love to force her to go threw a day with us and let her see how it really fills…let’s see how well her day starts knowing the first thing she does as soon as she opens her eyes and before she even gets to pee is prick herself and check her bgl…. then start her day…..every day..”

A little extreme maybe, but a good point. Most people who don’t have diabetes have no idea of the reality of living each day with diabetes. They are fed media information that is often inaccurate and misleading.

Workplace Education 

One strategy that could be helpful in the workplace is have the management organise on International Diabetes Day (or similar) a screening check for all staff. This cold incorporate talks from health professionals, and from people in that workplace who have diabetes.

I’m not sure of the statistics here in Australia, but according to Kaiser Family Foundation data, the American Diabetes Association’s workplace cost calculator estimates that for a company with 1,000 employees:

  • 100 employees have diabetes
  • 27 of them are undiagnosed
  • 250 have prediabetes

I suspect Australian stats are quite similar.

Friends and Family

Is dealing with this problem of misguided comments the same with friends and family?

This may be a little different, easier, to manage as you have an emotional relationship with these people. What strategies have you used in this situation? What has and hasn’t worked?

Fact Sheets

You could share with anybody who makes ignorant comments about you and your diabetes a ‘fact sheet’ about the realities of living with diabetes. What might you write in this ‘I Live Every Minute with Diabetes’ fact sheet?

How about people reading this blog make some comments below as to what they would write on this fact sheet. Make something that is a team effort here to be shared by all.

One reply posted said: “Never listen to ignorant people. Every one of us is different and we do what we need to in order to take care of ourselves. But just because someone hasn’t heard of it doesn’t make them ignorant, just makes them uninformed…like me!!!”

This problem of being hounded by people who do not understand diabetes has the potential to cause ‘diabetes burnout’ if heard often enough from friends, family and in the workplace.

You might like to read the book: Putting the Brakes On Diabetes Burnout

“Experiencing burnout is not about being weak or being a ‘bad’ person. It is nothing to be ashamed of. Diabetes burnout can happen to any person with diabetes at any time, in particular after a period of high voltage stress, ill health or difficult diabetes control. Or it can have no obvious triggers apart from being worn down by years of self-management. What is common to all cases of diabetes burnout is that it can lead you into rough seas with no promise of calmer waters on the horizon. This is different to the experience of depression but can sometimes be related to, happen alongside, or even lead to, depression.” 

Travel Safely my friends.

Kind Regards from

David – Diabetes Educator 

7 Comments

  1. Imagine_David on March 11, 2014 at 7:27 pm

    from one of my a LinkedIn connections:
    “Great reading and so very true, whenever you have a condition, you always get so called experts who are experts because they know someone who has the same condition and this is how they deal with it, so of course it’s fact, “You shouldn’t be doing that, you NEED to do ti this way” Really? and what do you know!? My advice to anyone is, if you have a condition of any kind, educate yourself as much as possible and work based on your own knowledge and if you don’t know, ask a professional, then you will know. My Partner has mastered all the effects of my diabetes and she is amazing.”

  2. Imagine_David on March 11, 2014 at 7:29 pm

    From another LinkedIn connection, a dietitian:
    “Love your article”

  3. Alex_of_Oz on March 14, 2014 at 2:49 pm

    Living with diabetes

    How do you explain to someone what it means to be living with type 1 diabetes? You could use words like frightening, painful, vigilance, hard work, frustrating, dangerous, annoying, but these same words could be used to describe many things, such as driving a car in the city. Maybe not “painful”, but certainly all of the others. So how do you communicate effectively the kaleidoscope of emotions and dramas that a person with type 1 diabetes goes through every minute of every hour of every day of their life, in a way that enables the other person to truly understand what is involved with living with this condition?

    Maybe I could start by describing the first 5 minutes of the day after the alarm has woken me up. For a normal person they might get out of bed and put their dressing gown on, then wander to the toilet, then wander out to the kitchen for a cup of tea. They could sit there for the next 2 hours drinking tea and catching up with the day’s news on the internet.

    For a person with type 1 diabetes, in this case me, the first 30 seconds is the same. Get out of bed, have a stretch, put my dressing gown on and wander to the toilet. But that’s where the similarity finishes. You see, the diabetic must now take out their blood glucose measurement kit and get it ready for a test. This involves testing strips, adjustments, settings etc, as well as preparing the finger pricker. Next I choose which finger is the best to use. This involves a number of quick decisions, such as which finger did I use last time, and which side of the finger tip? I need to avoid punishing the same part of the same finger too many times as this could lead to the finger getting too sore, or infected, or toughening up so it is no longer useable as a testing site.

    Once these decisions have been made, I need to do something that other people would talk about as an “unfortunate event” over a cup of tea with their friends. I need to press the button and prick my finger with a sharp sliver of steel, in order to cause it to bleed. If it doesn’t bleed enough, producing a nice, rounded drop of blood, I need to choose another spot and do it again, until I have a good drop of blood to apply to the testing strip. Then the wait begins. It might only be 5 seconds, but in that 5 seconds I am wondering how good I was with my food last night and whether this morning I’ll be congratulated with a decent reading, somewhere between 4 and 7. If it comes back too high, let’s say 10, it means that over a long period of time I am open to the long term negative effects of poorly controlled diabetes, which are too devastating to consider. And if it comes back too low, let’s say 3 or below, it means I am in imminent danger of slipping into a hypo, and the immediate danger that involves. So too high, long term danger. Too low, immediate danger. Amount of control I as a diabetic have over this situation? Well, when you take into account the factors that I have little or no control over, such as the weather, the season, my stress level at work and in my private life, the amount of rest I have been getting over the last few days and the amount of work, physical and mental, and exercise I have done over the last week or so, limited. And all of these questions and emotions rush through my head in the 5 seconds I stand there until the reading comes up.

    8.3

    It’s a little bit high, but not too bad. It’s a reasonable start to the day. At least I are not in any danger of collapsing on the bathroom floor. So now, with this new knowledge, it’s time to prepare for my morning insulin injections. There are modern, new ways of managing type 1 diabetes, as well as older methods, all of which require the injection of insulin. The method I use is now considered old fashioned, but it is what I’ve done for 40 years and it’s worked for me so far. So I have my standard dosages of two insulins for each morning, which remains the same each day, unless there is a serious reason to change them. This could be situations such as an expected physical activity coming up during the morning, or suffering from an ailment such as a cold or flu, which changes the dosage requirements of insulin significantly. However there is also the opportunity to adjust the dosage by small increments if the BGL test I have just done shows a radical reading. This would usually be a radically high reading, which would prompt me to consider changing the dosage of one of the insulins up by a very small amount. But, and this is very important, the adjustment of the dosage in this way needs to be done in a thoughtful and calculated way. Too much insulin unnecessarily will leave me open to serious problems later in the morning if I get it wrong.

    So after considering the many decision points, by thinking ahead and anticipating what the day ahead holds in store, I take out the first insulin pen and prepare it. This involves taking the cap off, taking one of the disposable needles and peeling the paper covering off the back, then screwing it onto the end of the pen. I then prime the pen, by winding on 2 units, then depressing the plunger and letting the 2 units of insulin spray into the air. This removes any air in the pathway and checks that the needle is not blocked, meaning that the next time I depress the plunger it will be just insulin going through.

    Next comes the choice of where to inject. After having something like 40,000 injections, at 3 per day for 40 years, it is important to spread the injections around. It is a subcutaneous injection, meaning it goes into the fat underneath the skin, so it needs a place that has enough fat to inject into. But there’s the issue that, over an extended period of time, the insulin, or the act of injecting, can react with the fat and turn it into a hard lump. When this happens it becomes impossible to inject into, being hard and painful. But more importantly, it also becomes pointless to inject into, because the insulin can sit in the lump unabsorbed, thereby making it ineffective. So it is important to vary the place where I inject.

    I decide on which of the four areas I have to use this morning, so pinch up a roll of skin and slip the needle in. Being so fine, and the site being carefully managed over time, the needle slips in quite easily. But that does not negate the opportunity for a blood vessel to be in the way and punctured. As the blood vessels are surrounded by nerves, it is always quite painful if I stray too close to one. It is also potentially dangerous, as to allow the insulin to enter the blood vessel directly is to cause the insulin to act too quickly, dropping the BSL dramatically. Over the 40 years, this has happened more than once. But luckily is a rare event.

    This process is repeated with the other insulin, after considering whether to maintain the standard dosage, or to alter slightly for some reason. With a BSL reading of 8.3 and a standard day of activity coming up, and with the weather set to be 24C and no emotional upheavals, such as a funeral or hospital visit for a friend, there is no reason to alter the dosage up or down.

    The diabetic has been out of bed for 5 minutes so far, and has already been through this process. If this was a oncer, or went on for a few days until “they got better”, like having the flu or a cold, or even pneumonia, it might be acceptable. But this routine happens every morning, as it has done every morning for the last 40 years. There have been slight variations in that time, such as the magical introduction of the injection pens with their ultra fine needles, as opposed to the old disposable syringes and their comparatively thick and painful needles, or the much worse glass syringes that came before them. But the basic routine, and it’s accompanying urgency and importance, hasn’t changed in all that time. Plus, as it stands, it will be going on for the next 20 or 30 years.

    That is just a description of the first 5 minutes of the day. Similar situations exist throughout the day, with finger pricks, testing and injections. Plus there are the many moments of decision such as the choice of food for each of the 3 main meals and the 3 snacks that happen at regular intervals throughout the day. There is the constant monitoring of how I feel, how I’m responding to people in meetings, or on the phone, or in ad-hoc social situations. Am I finding it difficult, or my comments, questions, responses somehow not quite appropriate to the moment? If so then could the reason be that the sugar is low? Do I need to test? Do I need to eat some of my emergency food immediately to ward off a looming crisis?

    There are a constant set of questions always demanding to be asked and answered.

    How do I feel?
    What time is it?
    Do I need to eat?
    How long until I eat?
    Do I have enough time and sugar level to perform that impromptu, unplanned for activity?
    Do I have enough food?
    Do I have my emergency food?
    Is it enough to cover unexpected needs?
    Is it the type of food that can be carried easily and will survive intact through whatever conditions are likely to occur?

    And this is for a standard day. When something out of the ordinary is coming up, like a two day drive to Brisbane, or a trip to the football that means travelling during the normal time for the evening injection and meal, the unknown to be managed escalates.

    So when a well meaning relative, friend or acquaintance offers advice, try to smile and say thank-you. They mean well but really haven’t got a clue.

  4. Alex on March 14, 2014 at 8:43 pm

    Living with Type 1 Diabetes

    How do you explain to someone what it means to be living with type 1 diabetes? You could use words like frightening, painful, vigilance, hard work, frustrating, dangerous, annoying, but these same words could be used to describe many things, such as driving a car in the city. Maybe not “painful”, but certainly all of the others. So how do you communicate effectively the kaleidoscope of emotions and dramas that a person with type 1 diabetes goes through every minute of every hour of every day of their life, in a way that enables the other person to truly understand what is involved with living with this condition?

    Maybe I could start by describing the first 5 minutes of the day after the alarm has woken me up. For a normal person they might get out of bed and put their dressing gown on, then wander to the toilet, then wander out to the kitchen for a cup of tea. They could sit there for the next 2 hours drinking tea and catching up with the day’s news on the internet.

    For a person with type 1 diabetes, in this case me, the first 30 seconds is the same. Get out of bed, have a stretch, put my dressing gown on and wander to the toilet. But that’s where the similarity finishes. You see, the diabetic must now take out their blood glucose measurement kit and get it ready for a test. This involves testing strips, adjustments, settings etc, as well as preparing the finger pricker. Next I choose which finger is the best to use. This involves a number of quick decisions, such as which finger did I use last time, and which side of the finger tip? I need to avoid punishing the same part of the same finger too many times as this could lead to the finger getting too sore, or infected, or toughening up so it is no longer useable as a testing site.

    Once these decisions have been made, I need to do something that other people would talk about as an “unfortunate event” over a cup of tea with their friends. I need to press the button and prick my finger with a sharp sliver of steel, in order to cause it to bleed. If it doesn’t bleed enough, producing a nice, rounded drop of blood, I need to choose another spot and do it again, until I have a good drop of blood to apply to the testing strip. Then the wait begins. It might only be 5 seconds, but in that 5 seconds I am wondering how good I was with my food last night and whether this morning I’ll be congratulated with a decent reading, somewhere between 4 and 7. If it comes back too high, let’s say 10, it means that over a long period of time I am open to the long term negative effects of poorly controlled diabetes, which are too devastating to consider. And if it comes back too low, let’s say 3 or below, it means I am in imminent danger of slipping into a hypo, and the immediate danger that involves. So too high, long term danger. Too low, immediate danger. Amount of control I as a diabetic have over this situation? Well, when you take into account the factors that I have little or no control over, such as the weather, the season, my stress level at work and in my private life, the amount of rest I have been getting over the last few days and the amount of work, physical and mental, and exercise I have done over the last week or so, limited. And all of these questions and emotions rush through my head in the 5 seconds I stand there until the reading comes up.

    8.3

    It’s a little bit high, but not too bad. It’s a reasonable start to the day. At least I are not in any danger of collapsing on the bathroom floor. So now, with this new knowledge, it’s time to prepare for my morning insulin injections. There are modern, new ways of managing type 1 diabetes, as well as older methods, all of which require the injection of insulin. The method I use is now considered old fashioned, but it is what I’ve done for 40 years and it’s worked for me so far. So I have my standard dosages of two insulins for each morning, which remains the same each day, unless there is a serious reason to change them. This could be situations such as an expected physical activity coming up during the morning, or suffering from an ailment such as a cold or flu, which changes the dosage requirements of insulin significantly. However there is also the opportunity to adjust the dosage by small increments if the BGL test I have just done shows a radical reading. This would usually be a radically high reading, which would prompt me to consider changing the dosage of one of the insulins up by a very small amount. But, and this is very important, the adjustment of the dosage in this way needs to be done in a thoughtful and calculated way. Too much insulin unnecessarily will leave me open to serious problems later in the morning if I get it wrong.

    So after considering the many decision points, by thinking ahead and anticipating what the day ahead holds in store, I take out the first insulin pen and prepare it. This involves taking the cap off, taking one of the disposable needles and peeling the paper covering off the back, then screwing it onto the end of the pen. I then prime the pen, by winding on 2 units, then depressing the plunger and letting the 2 units of insulin spray into the air. This removes any air in the pathway and checks that the needle is not blocked, meaning that the next time I depress the plunger it will be just insulin going through.

    Next comes the choice of where to inject. After having something like 40,000 injections, at 3 per day for 40 years, it is important to spread the injections around. It is a subcutaneous injection, meaning it goes into the fat underneath the skin, so it needs a place that has enough fat to inject into. But there’s the issue that, over an extended period of time, the insulin, or the act of injecting, can react with the fat and turn it into a hard lump. When this happens it becomes impossible to inject into, being hard and painful. But more importantly, it also becomes pointless to inject into, because the insulin can sit in the lump unabsorbed, thereby making it ineffective. So it is important to vary the place where I inject.

    I decide on which of the four areas I have to use this morning, so pinch up a roll of skin and slip the needle in. Being so fine, and the site being carefully managed over time, the needle slips in quite easily. But that does not negate the opportunity for a blood vessel to be in the way and punctured. As the blood vessels are surrounded by nerves, it is always quite painful if I stray too close to one. It is also potentially dangerous, as to allow the insulin to enter the blood vessel directly is to cause the insulin to act too quickly, dropping the BSL dramatically. Over the 40 years, this has happened more than once. But luckily is a rare event.

    This process is repeated with the other insulin, after considering whether to maintain the standard dosage, or to alter slightly for some reason. With a BSL reading of 8.3 and a standard day of activity coming up, and with the weather set to be 24C and no emotional upheavals, such as a funeral or hospital visit for a friend, there is no reason to alter the dosage up or down.

    The diabetic has been out of bed for 5 minutes so far, and has already been through this process. If this was a oncer, or went on for a few days until “they got better”, like having the flu or a cold, or even pneumonia, it might be acceptable. But this routine happens every morning, as it has done every morning for the last 40 years. There have been slight variations in that time, such as the magical introduction of the injection pens with their ultra fine needles, as opposed to the old disposable syringes and their comparatively thick and painful needles, or the much worse glass syringes that came before them. But the basic routine, and it’s accompanying urgency and importance, hasn’t changed in all that time. Plus, as it stands, it will be going on for the next 20 or 30 years.

    That is just a description of the first 5 minutes of the day. Similar situations exist throughout the day, with finger pricks, testing and injections. Plus there are the many moments of decision such as the choice of food for each of the 3 main meals and the 3 snacks that happen at regular intervals throughout the day. There is the constant monitoring of how I feel, how I’m responding to people in meetings, or on the phone, or in ad-hoc social situations. Am I finding it difficult, or my comments, questions, responses somehow not quite appropriate to the moment? If so then could the reason be that the sugar is low? Do I need to test? Do I need to eat some of my emergency food immediately to ward off a looming crisis?

    There are a constant set of questions always demanding to be asked and answered.

    How do I feel?
    What time is it?
    Do I need to eat?
    How long until I eat?
    Do I have enough time and sugar level to perform that impromptu, unplanned for activity?
    Do I have enough food?
    Do I have my emergency food?
    Is it enough to cover unexpected needs?
    Is it the type of food that can be carried easily and will survive intact through whatever conditions are likely to occur?

    And this is for a standard day. When something out of the ordinary is coming up, like a two day drive to Brisbane, or a trip to the football that means travelling during the normal time for the evening injection and meal, the unknown to be managed escalates.

    So when a well meaning relative, friend or acquaintance offers advice, try to smile and say thank-you. They mean well but really haven’t got a clue.

    • Sue on March 15, 2014 at 5:35 pm

      Brilliant!

    • Emma on March 17, 2014 at 11:09 am

      Well said!! You should pass this on to newly diagnosed and families! This is a terrific insight that is important for others to read!

  5. Imagine_David on March 18, 2014 at 3:07 pm

    Thank you so much for your contribution here Alex.

    Might anybody else like to share like this, please feel free. Im sure many other people can relate to many of these things that Alex writes. Im also sure that writing your thoughts can be of benefit to others who have just been diagnosed with diabetes and are reading this, or have had diabetes and are nodding their heads in agreement.

    Kind Regards,
    David
    Diabetes Educator @ Diabetes Counselling Online

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