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Is Diabetes Education Lacking for Those Newly Diagnosed?

I just read an article about lack of education for people newly diagnosed with diabetes.  And it got me thinking that this might be a great topic for us to discuss.

I was diagnosed with Type 1 in 1979.  I spent a week in the hospital.  I remember my parents and I were taught how I should eat and how to inject my insulin and how to test my urine.  There were no blood glucose meters or insulin pumps back then, so we didn't need to learn any of that.  But we left the hospital with a big book of food exchanges to help us navigate my meals.

What is diabetes education like for the newly diagnosed these days?  How does it differ for Type 1s and Type 2s and pre-diabetes?  Did you feel like you were taught the things you needed to know, or did you learn a lot on your own?  What resources do you wish you had been given?
posted Mar 13 in Conversation by KarenG (16,340 points)

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Certainly for me it was lacking! I learned how to do blood tests, give injections, and recognize hypo- and hyper-glycemia symptoms in the hospital. I was released and sent home on basal and sliding scale fast insulins and metformin with a referral for diabetes education when I got strong enough. The thinking was, I guess, that I'd "eventually" only need basal and metformin once I rcovered...even though I was diagnosed as a Type 1.5 and my A1c on admission was 15 percent!! But the hospital's diabetes center was really only set up for Type 2s (most Type 1s get referred to the only specialist in town--that's another story). The program for Type 2s is very thorough and informative but not really what I needed! Thank goodness the CDE was willing to review my BG logs and answer all my questions. She also switched me to pre-meal boluses and got me off the metformin (horrible lows). But still...I never learned about stacking risks, correction and sensitivity factors, and how to (sort of) plan for exercise until I heard anout Think Like A Pancreas from an online forum.  I feel like I fell through the gap on my diabetes education and thus was delayed in learning to manage this confounded disease for a long time.  :-()

answered Mar 13 by TortieGirl (3,950 points)
For me some of the education was a starting point and some was lacking..   I was diagnosed in 2014 with pre-diabetes.  This is the lacking part - I was not given any information or education on diabetes.  I was told to just watch my diet. ?huh?  Now, I have to say that I had just moved to a new state and was seen by my GYN (I didn't have a PCP yet) who ran bloodwork on me and discovered this.  I think anyone diagnosed as prediabetes should be given all the educational resources that a diabetic would get so that they can know what to do and prevent getting diabetes.

Fast forward to April 2016 I was diagnosed with T2 and my PCP gave me a meter and set me up to see a CNE.  That was good the good part.

When I saw the CNE she set up my meter, showed me how to use it and gave me information about carb counting.  She stated that I should do a FBG a few times a week and that I should test after meals a few times a week.  In my opinion that was very lacking in education - Testing that way would in no way tell me what foods were spiking my BG or how many carbs were too many for me at one given time.

What I have learned is that every diabetic reacts differently to how many carbs they can have and what kinds of carbs they can eat.  The nutritionist's meal plan they give every diabetic is not a one size fits all plan!

I learned so much from the diabetes.org community forums about testing (when, why, what to do with your numbers, how to get them down, etc ) and eating to my meter that was never provided to me from a medical person. If I had not been so determined to learn everything I could about diabetes and how to manage it without medication, my A1C would not be where is is today - on a downward path!

Bottom line, diabetics need to take charge of their own care and learn as much as they can about it.  Every diabetic needs to learn how to determine which carbs work for them, portion sizes, and how many carbs at one time impact your BG.
answered Mar 16 by Donna (530 points)
I think one of the problems for me with education when I was first diagnosed is how rigid it makes the diet portion. Throw out your hunger && satiety cues, stop listening to your body etc. The best education I got wasn't from a diabetes educator at all, it was at the JDRF picnics and then later in the diabetes online forums. They had real PRACTICAL advice about living in the day to day with diabetes vs. what a book says diabetes SHOULD be like, it was what diabetes was ACTUALLY like! There needs to be more patient perspective in the education piece. We shouldn't be leaving so many diabetics to figure it out by trial && fire.
answered Mar 21 by Erinmakers (1,390 points)
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I am  Type 2 diabetic.  It took a little over a year for me to learn to navigate the system and get in to see a CDE and even then it was because it finally occurred to me to use the number on the back of my insurance card and see if they would cover the appointment.  I got no help from my DR or even the Endo regarding an appointment for diet education.   It could be because I lost 70 pounds in 10 months and got my A1C to 5.1 on my own by reading everything I could get my hands on from the local library and online.

I also found diabetes classes through the regional health department.   They are very thorough classes with simple, easy  to understand plate method guidelines to healthy eating.

I wish my Dr's would have done more than hand me a diet sheet that was very hard to understand and send me out the door.  

I have no idea since there is a dietitian on staff at every regional health department in the USA (at least that is what I was told),, why those classes aren't promoted and made easier to find.  

There is so much good information available with our computers, but also some that is very bad and just there to make money off our diagnosis.   I wish that every diabetic had easy access to classes that are free or affordable and that all Drs offices had some system in place to help diabetics find the help they need the day they are diagnosed.  Diagnosis day is frightening and it's the best time to help someone understand that there are things they can do to avoid complications.  If more people were given that opportunity for education on day one, I think there would be many less complications from diabetes.
answered Mar 21 by anonymous
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I am not newly diagnosed, and much has change during the intervening years, but I must say that having access to diabetes education immediately after diagnosis, paid for by my insurance to which I could take 1 significant other (I took my newly diagnosed son who was uninsured) was absolutely wonderful (for both of us)!

I recently revisited a DE and got an update! I don't think I would have been as successful in living with diabetes had I not gotten correct information right after diagnosis.
answered Mar 22 by anonymous
I was diagnosed Type 2 just 5 weeks ago.  My family doctor did not tell me. The PA did. Plus, I was not given a heads up.  Never was told I had Pre diabetes or that my sugar was high.  No family history. I was expecting cholesterol results, not this! The PA told me to try to lower my #s with diet & exercise, & "WE"  would see where my #s are in 3 months. No suggestions, no talk of me checking my #s daily. I was told a diabetic counselor with the local hospital would call me to set up 3 appointments for classes. 5 days later I saw a Diabetes counselor for 1 1/2 hours.  She spent most of that time talking to me about carbs and checking my feet. She showed me how to do a BGT & gave me a test kit that kept messing up while she was showing me. Was told to get a Rx from my dr for test strips & needles. I ended up buying my own test kit, and got the Rx.  I was so freaked out, I immediately joined Weight Watchers (which isn't low carb friendly!) & started walking 30 minutes a day (I'm now walking 2.7 miles in 45 -50 minutes!) It took me 2 weeks to tell my husband. I just realized a week ago that I had focused solely on diet & exercise, not learning about diabetes! 5 days of depression later, I'm back on track. I have my first of 2 all day classes in 2 1/2 weeks, & the 3rd one a month after that. I have stopped Weight Watchers, but still watching those blasted carbs! I am looking into doing a lower than 135 carb diet, maybe 100 to start, but still researching it. Definitely lacking!
answered Mar 22 by Judebug (340 points)
edited Mar 22 by Judebug
I was diagnosed in 1995- the HMO days.  My fasting blood sugar was 550 and all the doctor told me was to lose more weight ( I was 125 and 5'7"), watch what I ate and stop drinking juice.  Thank goodness they set up appointments with a diabetic training nurse and a dietician.  The nurse taught me about the meter.  The dietician taught me how to eat.  My training was ok but I had to learn a lot on my own since I was misdiagnosed as a type 2.   I don't think regular doctors realized you could get type 1 as an older adult.  When they gave up trying to bring my blood sugar down with pills and sent me to an endocrinologist (a big no no in HMO days) I was diagnosed as a type 1 and had to learn more about carb counting and insulin injections.
answered Mar 22 by Pump1fun (1,770 points)

Thank you, thank you, thank you for bringing up this topic!  It was just what I needed to see today.  lol  Will explain THAT statement at the end.  :)

When I was diagnosed back in 1982, I spent 3 days in the hospital learning to give shots to an orange.  I couldn't go home until I was able to give myself a shot.  lol  Good criteria for being ready to face type 1 at home, right?  I think they figured since my husband at the time was a type-1 I would be just fine.  I was given a booklet that told me what foods had what food exchange numbers and how many numbers to eat at my 3 meals and a snack.  I was told to go buy me a glucometer to check blood sugars 3-4 times each day (not paid for by insurance then because I wasn't legally blind.  What???)  There you go and good luck!  Oh, and don't eat sugar ever, ever again!  lol  What a mess, right?  Well, I was born terrified of needles so taking my own shots or checking my own blood sugars was a NO WAY for me.  My ex did all of that right up until the day I kicked him out.  Now what!

I spent the next year taking insulin in between DKA episodes and passing out from fear.  Literally!  Drove myself and my 3 little children to the ER one night at 1300+ bg!  I didn't know anything about where or how to get information without having to come up with money for books and resources from stores.  I was pretty much on my own with this disease for the first 15 years.  Then I became more internet saavy and learned a lot on my own.  Became a little more stable financially and learned a lot on my own with books.  Got new doctors and found out more resources to learn stuff on my own.....  See the patter here?  ....on my own!!!!

About 10 years ago i was introduced to what a CDE was and then life began changing.  I was still learning most of it on my own, but I had someone feeding me resources and making sure that what I was "learning" was appropriate and correct.  Now I have found I am a resource for many others and have a list of resources and places people can go to find and advocate for their own health.  I have become involved in several advocate for health groups and am learning tons from those arenas.  Yes, many people being diagnosed now have more resources for education than we did back in '82.  BUT, most doctors have no idea what is needed or how to get their patients to those people who can help them.  Most insurance companies will pay for diabetes education, but doctors don't prescribe it to their patients and/or do not have it available through their clinics or networks.  Education for the newly diagnosed is STILL done poorly and well hidden in most places.  Very, very discouraging!  And if you are not a "newly diagnosed diabetic", getting further education is nearly impossible unless you get it from other diabetics through support groups online or face to face.  I have been sent even now to get diabetic education review and ended up knowing many, many things the instructor was not aware of.  Then, I think what IS available is so generalized that the idea of my body works differently than his/her body does with insulin or food is not addressed at all!  So unfortunately a lot of diabetics leave their doctor's offices feeling they are doing a terrible job because they have been told they aren't doing it right or the blood sugars would be better managed.  B.S.!!!!  You CAN be doing everything "right" and still have bgs all over the place because your body forgot to read the textboook on how to be diabetic.  lol  (My life in a nutshell!  hahaha)

My life dream is to create a "camp/education center" type situation where newly diagnosed and "need more help" diabetics can have a week where the education and hands-on learning is intensive and  personal.  Where they can learn what they need to know to LIVE with diabetes---not just avoid complications (let's scary the sh*t out of them so that they will do exactly what we want them to do) info--and actually live well with this disease.  I have looked into what is currently available and unfortunately adults are pretty much out of the loop when it comes to this type of help.  I would like it to be something where a couple of days can be spent with the family or support system of the diabetic so that THEY can learn also how to be supportive (not a police system) and how to deal with their own anxieties over the diagnosis or how things have been going.  It should also address the mental and emotional side of dealing with this illness too.  NO ONE ever addresses that!  And sometimes I think THAT is harder than taking shots and eating right.  In my opinion any way.  So feel free to let me know what YOU think would be information worthy of including, what type of environments you might think appropriate, specialists who should be involved, anything and everything you, if given the chance today to spend a week learning about "your diabetes and how to live a terrific life with it" would like to have available.  This is a project about 5-8 years out, but it IS in the works.  

Diabetes education definitely still needs to be expanded and improved---but it needs to be available to more diabetics without so much financial discrimination. yes

answered Mar 23 by bndtnana (460 points)
Wow!!  I think was strikes me most here, and make me so proud of you all, is that when your diabetes education was lacking you forged ahead and found the education you needed on your own.  I hope you know how inspiring that is.  You are all strong and resourceful and you are paving the way for others.

Thank you all for sharing your stories - and keep them coming.
answered Mar 23 by KarenG (16,340 points)
I think it depends on where in the country you are, and how old you are at diagnosis.

I was 2 years old at diagnosis and have no clue what my parents were told.  There was no Internet or social media.  You depended on the pediatrician for information.
answered Apr 3 by phyllisk (4,500 points)