Using Fear To Motivate Children With Type 1

Type 1 and LADA
1

The following message appeared in a discussion on another diabetes website:

“A bit of healthy fear can motivate you to do your best to take good care of yourself and to exercise caution with your health so hopefully nothing this extreme will ever happen.”

A friend of mine started a new discussion in reply to that message. Here is his post:

"I would have to disagree, I don’t like when people use fear to try to motivate me to take care of myself. I realize it is necessary for a diabetic to understand the possibility of complications, but I wish there was a uniformed and less harsh/ scary way for doctors to inform diabetic children. The “fear” that some used to try to motivate or scare me when I was younger just made me feel hopeless and scared. I think children have a hard time understanding the fact that if they take care of themselves they greatly reduce their risk for complications, they just hear that “diabetics lose limbs” and assume it will happen to them.

I think endocrinologists and pediatricians should have special training on how to discuss diabetes with children, what to say, and what not to say. I think some doctors are too harsh or not careful enough to make sure the child understands that people that take care of themselves have a great chance to avoid or delay complications.

Changes I think need to be made in the relationship between Type 1 children and their doctors:

  1. Doctors should never try to scare the child/ patient
  2. Doctors should never make the child feel different from other non D children
  3. Doctors should never make a child or parents feel guilty for high Bg numbers
  4. Doctors should tell children about people who have had the disease for years and are perfectly healthy, that would be motivation and give hope
  5. Doctors should put themselves in the childs shoes rather than judge and talk to the child like perfect management is easy
  6. Doctors should put themselves in the parents shoes rather than judge and talk to the parent like perfect management is easy
  7. Doctors who want to work with diabetic children should be required to go through special training concentrating on the emotional effects of type 1 diabetes to the child and the family of the child. Teaching the doctor how to communicate effectively and positively with the children and the parents, not to judge, scare, or guilt them."

I think my friend has written a wonderful message. He has received many thanks, mine included!!!

What do you think?

2

I cannot speak from actual experience. Fear probably does not work for adults although seeing my brothers gangrened feet sure motivate to keep the BG as close as possible to normal. Doctors cannot communicate with adults maybe it is easier with children.

3

Thanks for this post, Richard!

To be honest, one of the most vivid memories of my childhood with T1 was a neighbour who would tell me every time she saw me eating [insert pretty much anything here] that I’d better stop if I wanted to have feet when I grew up. I imagine that she was trying to instill the same fear as the advertisement you alluded to above. She was, in general, a good-hearted person; but this memory truly sticks out as one of the most negative of my entire childhood.

Thank goodness I had others who readily introduced me to amazing role models… actual people living with Type 1. Who knows who I’d have turn out to be otherwise!

4

Hello Richard157:



I hope the new year finds you in excellent spirits, and even better health?!



In principle I agree with your friends post. I prefer that approach in fact. I do have one question though… what do you/they (anybody) do about bone headed stupid actions which either cause trouble or are absolutely guaranteed to cause trouble? Something a kid/teen/grown-up does that makes everybody go slack-jawed and speechless at the stupidity which the action(s) represent…



Not testing for three days straight and covering completely blindly… or not covering at all in any way.



Sucking down a full litre of Sprite (any sugered soda) and doing zero to acknoqledge that tsunami of sugar or to cover for it, as a regular daily habit…



Could come up with a fist full of examples, but suffice to say, some pretty foolish actions, dumb mistakes, etc… Is there any place for FEAR as a tool against such foolish actions, idiotic poor chices IYHO? Or is fear method just an inappropriate tool ever?



Stuart

5

When I was diagnosed about 30 years ago, the start and end of my first “diabetes education” was some very graphic pictures of gangrene and amputated limbs. Really, I’m not making it up, that was the education.



As education it was spectacularly unuseful. Just a little later I got a little book about urine testing and insulin dose adjustment that seemed way more on-the-mark, and looking back it was really very empowering, helping me feel that I actually could be in control.



Even today I read here about T1’s who have not yet graduated to self-adjustment of insulin doses based on testing. And there’s the other camp of T2’s who preach doom and gloom based on any bg reading above 140. Wow, it is so empowering to feel that I have at least some control over doses etc. (even though not all my test results are perfect.)

6

I was a teenager when I was dx’ed so I didn’t listen to much that anyone told me. I scared myself w/ awareness of the complications. I’m not really sure from what though?

7

I do not remember if my parents and I were told about the terrible things that could happen when I was diagnosed in 1945. I was 6, and cannot remember much of what occurred back then. If fear was used, my parents never told me anything about it. I wonder if they were hiding the painful truth from me? If so, I am glad I never knew. I was in my twenties before I knew about diabetes complications. Not knowing at an earlier age enabled me to have a carefree childhood. I do know that when I was 30, and again when I was in my late 30s, I was told that I would probably not live beyond my 40s. That was frightening enough to hear even at that age.

8

Tim wrote:
And there’s the other camp of T2’s who preach doom and gloom based on any bg reading above 140.

To focus on the early-stage Type 2’s who CAN stay under 140 is like saying all Type 1’s should be like the honeymooners who need little if any insulin. Doesn’t work, does it?

Although Type 2 progresses more slowly than Type 1, progress it does, and Type 2’s can experience all the horrible things that Type 1’s do.

It’s too bad that the media and many doctors focus on the pre-diabetic and early-stage Type 2’s when all is hunky dory (and everyone stays below 140!), but that’s not reality, any more than it is for Type 1’s. Diet and exercise work for only a limited time, and the orals have awful side-effects, some of which are yet to be seen (witness the Avandia mess-up), and Type 2’s are taught that insulin is a sign they’ve failed.

When I was in a nursing home after my coma, they let me sit at 388 for FOUR hours, because Type 2’s only get insulin before meals. Well, yeah, many Type 2’s do come down after meals, but I’m not a classic Type 2 – can’t be treated according to Type 2 protocols. Oh wait, I forgot, I was supposed to stay under 140!!!

Let’s learn about each other before we make statements that may be untrue, and hurtful as well.

9

When I was Diagnosed it was like this… I had a Pee test done for a Job, Doc called and to the hospital I went. The guilt on the way was, this better not cost me much, I can not affford you to be sick…oh wonderful…then into the hospital where I was scared to death with thoughts of I wonder how much this all costs. Then comes the testing and the Dr who couldn’t even speak english. Nurses that were calm and wispered, I was the youngest person on that ward. Then handing me a Orange, thinking I could eat it, and then STOP thats for injecting class…OMG! No Class, just stick it in…then here is a Book of Pictures of Gangreen legs and feet. And there were all old looking body parts. SO I thought I had a Disease that made you old real fast and this Disease was Shots and Pills, and It would Cost alot. So yes, fear was a factor. I was scared to death. I lived in a Town of 500 people, and it was mellow as can be. Nice neighbors and Nice kids, everyone knew everyones business. NOT! I was told this belonged to me, I was to take care of it, and TELL NO ONE! It was like I was a freak, and my mother didn’t want it to look like a Failure. Well
The Dr said NO COKE-A-COLA, and no canned goods or CANDY BARS!, oh my OMG, I love Coke and and veggies and UNO bars. My Dad gave them to me when I was BAD, SO I have a OLD peoples Disease, I can’t eat, and can’t tell anyone.
The next yrs, I was mad sad and very alone. I went through a period of eating no breakfast, we were to poor, and lunch was a run to the window at school with .25 cents, and hope there was Hot bread there. If not that .25 cents bought a small candy bar at the snack shack, or chips, but the candy bar filled my skinny 89 lb body up. Then dinner was nothing, I had to go to work,so I knew girls at the Baskin N Robbins, they gave me a Rootbeer float each night…And my mother didn’t buy my Insulin…I never heard a word about it. I was so thirsty all the time, pee’d all the time. I should have died…

So at 19 I got really sick, so took myself to the Hospital, NEEDLES and INSULIN they said were MY NEW FRIEND! This new Dr told me I wouldn’t live to be 40 yrs old.

So Gangreen pictures and thought left in my head of Old Peoples Disease, and COST alot, and Don’t tell anyone, and just not taken care of like a Dr should stress in many words, or a Parent that didn’t care about me, but cared what others thought, and then a Dr and Nurse Slamming me with harsh words…

I have heard it all, and there is blame to Parents, Doctors and Nurses and friends,

10

When I was first diagnosed and about after a year into the disease, a new MD looked into my eyes and told my mother I was going blind, and that I really needed to take care of myself. (before bloodsugar testing or A1C’s).

My mother ran me around seeing an eye specialist several times, and they could not find a thing wrong with my eyes.

Never went to the new MD again, but we believe she used it as a scare tactic.

11

I just realized where I learned about complications…Diabetes Forecast!

12

My son was diagnosed about 3 years ago when he was 5 years old. Our doctors and CDEs are wonderful. No scare tactics. Lots of encouragement, education, motivation, hope and understanding. Maybe it is getting better… Or maybe we are just lucky. Well, as lucky as one can be as a parent of a T1…

13

David, diagnosed at age 10 during the first week of Nov, could not go to sleep alone for about the first two years of diagnosis, all because of a story told about a teen with diabetes at Halloween who went into a coma. I don’t think the CDE meant to scare him, but he did spend the next two years of his life afraid every night that once he falls asleep, he might never wake up.

14

Cheryl, I have posted this discussion on several websites, and this is the saddest reply I have read. I hope David has lost that fear, and is now a healthy diabetic. How old is he now?

15

Amen! Doctors need to lose the “Blame the Victim” motto. They have never experienced a low blood sugar.

16

The only oppressing fear I felt as a child was that of being nuked. The tuck and duck under our school desk was madness.

The other gilt trip was the Catholic religion.

These things should be avoided they do nothing to enhance the enjoyment of life.

Life with diabetes is hard enough no need to make it terrifying.

17

Not a childhood Type 1, BUT I was raised with “Natalie, don’t eat that, you’ll get diabetes!” I remember being 3 years old and watching my grandmother inject herself in the leg, and I remember her boiling the needle and storing it in a black bakelite box. Diabetes was something scary, but I was sure I wouldn’t get it – insulin was for OLD people, like my grandma. So when I was sort-of-diagnosed (long story, I’ll save it for another time) at the age of 43, all I could do was cry, hearing all the voices saying “I told you so!!” I STILL rebel at the thought of diabetes – it wasn’t supposed to happen to me! (Remember, insulin is for OLD people, and I wasn’t old!!)
With children, I think you have to be matter of fact, and not introduce information they are not ready for, (just like with sex ed!) They will most certainly ask questions, and the trick is to answer them in age-appropriate ways, always leaving the door open for more if they want it. A better response than “You can’t have that!” is “How much insulin do you think you’d need if you ate that?” Also, when a child is high or low, “How do you feel right now? Are you dizzy? Is your mouth dry?” etc. to help them learn to verbalize feelings of high and low. And to learn consequences of food choices.
Letting a child participate in his/her own care as much as possible, without forcing things that the child really doesn’t want to do.
I think diabetes camp is a must for children, because they need to learn that they are not alone with this disease, and it gives them a supportive atmosphere in which to learn new things.

18

Agree those are important points. Thank your friend from me.

I don’t believe scare tactics, blame, shame & guilt are motivating at any age. My only T1 friend was diagnosed at three years old. He received nothing but doom & gloom & disapproval from doctors. For almost 30 years he didn’t take care of himself because he was convinced it was futile since he was going to die young anyway.

19

Hello Cheryl:

Has David found relief ??? We weep for him… all of us…

Stuart

20

I know this is sensitive topic and issue to deal with. Many a times we have to be tough with kids …as there is nothing to sugar coat when it comes to diabetes.

until they reach the age of 8 years old i agree that the kids are not in a position to understand or reason out cause and effect. But after a certain age they should be provided with sufficient information about both SUCCESS stories and FAILURE stories!!! I mean most schools talk about ills of drugs and also provide sex education…Then why is not the same with diabetes.

what is wrong is to just give only the bad side of diabetes or to create impression that diabetes is the beginning of slow and long death. The kids need to be told that their success now comes with an even greater responsibility and hard work when
compared to other normal kids. In the process of being responsible and honest towards their diabetes they will learn to be better parents when they grow up and will in general know how to manage and take effective decisions during difficult times ahead!!!

But what i don’t like is diabetes should not be used by elders…(parents and doctors) to discipline kids regarding issues that are totally relevant to diabetes. Like for example parents do not have any right to with hold access to insulin…when they kids don’t do their home work…or don’t keep their room clean etc etc…