Diabetes Self-Management Blog

My publisher wants a book for people new to Type 2. Can you help? What do you remember about your diagnosis? What information and support could you have used at that stressful time, and did you receive it?

For some people, the diagnosis comes as a shock. Robert told me, “I just went to a clinic for a flu I couldn’t shake off. The doctor looked at my labs and said, ‘How long have you had diabetes?’ It was the first I’d heard of it.”

For others, it was expected. Mary said, “My mother has diabetes, and one of my aunts died from it. I always figured it was coming for me.”

Some people say they felt overwhelmed. (I know I felt that way when I was diagnosed with multiple sclerosis.) “The whole thing was too much,” one woman said. “I didn’t know what it meant. Medicines, diet changes, glucose testing, lab tests, appointments. Diabetes was taking over my life.”

Does that ring true for you? Some people have the opposite experience. “My doctor was very casual about it,” Mark told me. “He made it seem like no big deal, which I liked at the time. But six years later, after my neuropathy started, I wished he had been stronger about it.”

Do you remember what emotions came up for you around your diagnosis? People report feeling scared, angry, sad, or confused. Did you feel any of that? What did you do about it, and what would have helped you?

From reading and from working with people with diabetes, it seems that many do not take it seriously until they get some kind of complication. It’s pretty easy to go into denial about it, because it can be too scary to think about. I think denial is often a mask for hopelessness or fear. Does that make sense for you?

Even when they do take it seriously, many people naturally rely on what their doctor tells them. Not until later, if ever, do they come to sites like Diabetes Self-Management and start educating themselves.

Did you go through a period of not taking diabetes seriously? Why did that happen? Have you always relied primarily on your doctors? When did you start seeking others sources of information? What kind of information has been most helpful?

Although some are happy with the nutrition support they received, others feel it wasn’t presented clearly enough, or think it wasn’t something they could follow. Some feel the diet advice they got was mostly wrong. How satisfied are you with the nutrition advice you received when diagnosed? Was it helpful and easy to understand?

I wonder what you were told about complications. Was the discussion frightening? Did fear of complications motivate you or scare you half to death? How would you have liked this topic presented?

A question I always ask clients is, what’s been the hardest thing about diabetes for you? Is it the glucose monitoring, the diet changes, exercise, understanding lab tests, dealing with sexual issues or other complications, or something else?

Finally, what was the turning point for you? What I would like this book to do is help people feel they have gotten their diabetes under some kind of control, that this is something they can handle. When did that happen for you? Or has it yet?

Sorry to ask all these questions, but I think it’s important for us to share our stories. You might help somebody else get through a difficult time. What should people know as they start out on this long and challenging journey? How can the knowledge be presented in a way they can take in?

Happy Holidays to everyone in our community! I wish you all the healthiest and happiest possible New Year.

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Comments
  1. Holy Hannah, line up the brick bats, grapeshot, blunderbusses, cannons and dry black powder.

    I think your publisher is on to something powerfull and very important.

    I am old enought to have lived thru the spectrunm of tube computers, loose individual transistors, parts and diodes - computers to the incredible integrated high speed number crunching machines of today we can all go to Fry’s to buy one sub $ 600.

    Today, one goes home or to ones coffee shop and immediatly accesses the web and away one goes checking into all he research data, other diabetics and learning on Diabetes Self Help.

    In the 1980’s ( not exactly eons ago), all that there was; was the military net - Platform that all Universities and research establishments hooked onto. If one was lucky working at a company with access or a University - one got to pere onto this world.

    For me the time span has been 30+ years since my T2 first twigged onto. Pre Diabetes was not known and they ran that ah ( words escape me) glucose test and I was running 160 but held at that.

    I believe that I would have loved a book that delved into the issues and why it is a big deal.

    In the 80’s - mediterannean diet, calorie counting and careful selection of foods and energy balance never discussed. Oh yes, you are eating too much sugar, candy, snacks, cakes and cookies. Well damm, I dropped those for 30 years and still ended up a mess and having to discover eating properly, energy balance, glucose overload and energy burn - exercise head on.

    Next, liver leaks, and how the human body really works - not those stupid short sighted simplistic and wrong explanations and drawings provided that were out there misleading everyone.

    A1c was not around in my early days and the best word was - one needs to get glucose on average sub -140 to prevent damage.

    Yes, T2 ( and all diabetes) is a real big deal as having ones glucose level too high ends up rotting out your vascular system and attached organs, kidneys, eyes, etc like how gasoline attacks natural rubber tubing and turning it soft and jelly like. Neoprene artificial rubber does not do that but we are humans.

    The amount of knowledge needed to manage this stinker exceeds any one experts depth of knowledge. One to day has to be proactive at all times, vigilant and learn as much as one can so that experts, Doctors, Dieticians, Endo’s exercise experts can work with one and provide maximum guidance and assistance in a high cost limited time and cost system. Costs from this problem will overwhelm and destroy any medical system with the costs and that is also why the individual needs to jump in here providing every bit of help, data logging and monitoring so one,s Doctors/experts can quickly assess/assist and correct.

    Could I have used that kind of initial guidance - you bet and I could/might have prevented this nasty path I ended up on. Today, I am under control and numbers good and eyes, kidneys and other parts healed as well as getting off some very serious meds that were contributing to the rot.

    Excellent idea, please do, I support this effort.
    Best wishes and good luck. Please advise how I can assist?

    Posted by jim snell |
  2. For me, a diagnosis of type 2 diabetes has changed my life dramatically for the better.

    I knew that from that point on i was in a fight for my life against a deadly enemy that would try to rob me of my vitality, my internal organs,my limbs and eventually my existence itself. And I got mad as hell and said “hell no, you’re not taking MY life. F)))K YOU”. Yes, I actually pictured DIABETES as a big bully trying to kill me.

    This has been my attitude for the 2 years since my diagnosis. My enemy is diabetes. It is not my doctor. It is not my family. It is not people who don’t “understand” diabetes.

    It is not a battle against the feeling that i “did this to myself”. Who even cares if i did or didn’t? If you are fighting an assailant in a parking lot who is trying to mug or rape or kill you, are you going to waste even 1 drop of energy thinking “God, how stupid i was to come out here so late at night”??? No. That is useless. You’re in a fight. You don’t care about crap like that. You only care about fighting for your life. And if you win, you get your life and you’re a hero. Nothing else matters.

    A major part of my fight is paying attention to what i eat. I don’t eat fried foods, cheesy foods, fatty foods. I don’t eat pasta. I don’t eat sweets. I do like these foods. But I sure as hell don’t like them more than i like not being on dialysis or having both my legs or my eyesight.

    I used to eat sweet fatty junk foods and i used to think those foods made me “happy”. But now that I don’t eat those foods I realize that I’m not any less happy, in fact I’m happier. So was it ever true that these foods made me “happy”?
    I have lost 50 lbs. I have become a long distance runner. My diabetes is currently in remission. I feel great.

    I have NO willpower, believe me, i am the weakest person in the world, no kidding. But I as SO afraid of being disabled and ill that it made me actually stop enjoying bad foods because I began to think of them as poison.

    I don’t know what the future holds for me, if or when my diabetes will cause complications, etc. But I do know that despite my diabetes, I will always, in some way, because of my dietary habits and exercise habits, be healthier than most people without diabetes. So there is a plus side to this disease, or there can be. Your diagnosis of type 2 diabetes is a turning point. It’s up to you to get something positive from it and turn your life around, at least health-wise.

    Posted by Dan Rothman |
  3. ok, i don’t know if that was what you were looking for (a diatribe, sort of). but that’s my basic feeling about my t2d. And it’s worked for me. Maybe this attitude could work for others. I know it will not work for many - I know this from the 8-10 diabetics I know, including my sister who has never tried to diet or exercise despite being diagnosed several years ago.

    Posted by Dan Rothman |
  4. It seems a bit funny that in your latest issue magazine nowhere do you list the amount of sugar that is found in foods such as in your article about Good Buys for Good Health nor in recipes when it comes to yield, etc., per serving. Everything else is given about them. After all sugar is at the heart of our problem. What gives?

    Posted by Curt Smith |
  5. Hi Mr. Smith,

    Thanks for your comment. The numbers in our carbohydrate field represent the total number of grams of carbohydrate (including simple sugars, starches, and other carbohydrates). We do not list simple sugars separately because they affect blood glucose no differently than starches and have the same number of calories per gram.

    Sincerely,
    Diane Fennell
    Web Editor

    Posted by Diane Fennell |
  6. Dave,

    Feel free to contact me Dave. I have had an interesting & successful journey thru Type II. Much more so than this blog could stand I reckon.

    Posted by Phil Hinds |
  7. having a chronic disease before DM II , I would have really liked to sweep it under the rug. This is essentially my 2nd time starting all over. Changes in routine, travel, and now dealing with DM and cancer in a loved one caused focusing on that, and much anxiety, & neglecting to do what I should. My 2 children have my 1st chronic disease, and from time to time need my help-another situation that creates anxiety and then I am too engaged in all that to pay attention to what I need to do for myself. No doubt, this will cost me, but I have reasons to do better, and I am capable of it with the right mindset. I have not found diabetic educators helpful. They tell me what I already know and insurance does not cover them well…I get frustrated with them & so far a waste of my time & $$. I can relate to Dan-I like my sweets but they spell trouble…mindset again.And no, in the end I am not happy about eating those things… I would be happier and prouder of myself for doing the right things. I guess, yes, as I put this in writing I realize that I too get overwhelmed, and then things start to crumble. How does one adapt to changes and still keep a balance with this part of life which consumes so much time and thought?

    Posted by Marsha |
  8. I am fortunate enough to go to a clinic associated with a major university hospital. Most of my doctors and nurses were also teachers, so diabetes education came second nature to them. I’ve always been an avid student of… well, everything, so I already had a lot of knowledge about physiology and medicine. I find that good doctors generally appreciate a good student (and bad doctors tend to feel threatened by a knowledgeable patient) so the combination of knowledgeable staff and a patient eager to learn made the process easier. Time with a diabetes nurse educator and a dietitian specializing in diabetes was scheduled as a matter of course, and I was included in pretty much every decision regarding my treatment -including the recent choice to ad supplemental insulin throughout the day.

    Posted by Joe |

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