To kick things off, here are my top five things
1) I wish someone had told me that dietary carb restriction could help control my diabetes no matter what my weight. Instead I was told that I got diabetes because I was fat and that it would all get better if I just ate a calorie restricted low fat diet and wasn't so obese. Sadly I although I did lose some weight the diet didn't really help.
2) My doctor initially told me to just take a pill and I would be all better. Well I would never be "better." And we still have that with the Diabetes "Prevention" Program claiming you can "prevent" diabetes. You can't cure or prevent diabetes (at least yet). I wish someone had really told me the truth that, when you get diabetes, you have diabetes for life. Jeez, don't lie to a patient!
3) Even when I learned of the lie it was hard for me to accept, I thought I could see my death marching before my eyes. I wish someone had told me that diabetes can be managed and you can live a long, healthy and normal life. And that it would be ok.
4) I wish someone had clearly explained that the old patriarchal model of medicine where the doctor is god and patient is a robot slave obeying orders just does not work with diabetes. The patient makes virtually all the decisions. It took me quite a while to accept that role and rearrange my medical team. I didn't understand I had too and practitioners are unwilling to accept their new role.
5) I wish someone had told me I wasn't alone. I knew there was diabetes around, I knew of Wilford Brimley. But I didn't know anyone else to talk to and I certainly didn't think there was anyone else like me. Yet there is. And you can surmount anything if you have good support.
1). Everyone should be covered and attend diabetes education classes. This should be a contractual requirement for all PWD's and also their healthcare advocate if they have one.
2). Everyone should be placed on a BG testing program, from day one they should start testing BG, every morning, before and after each meal,and at bead time. Only after a recommended A1c can the testing program be relaxed.
3). Every community center should have a Medical information counter, stocked with info
and local contacts...just like the travel and entertainment keyosk in every town.
4). There needs to be a battery of approved standard testing that's ran after the very first recorded out of range BG.
5). Paid counseling for newly Diagnosed...This needs to be someone like a (MSW) with a
certification that should include diabetes and chronic Illness. This should be a no charge event like a yearly physical.
Brian - I've struggled with this and continue to try and come to an honest stance that neither disparages doctors nor belittles the awesome knowledge that I bring to the discussion.
I wish someone had clearly explained that the old patriarchal model of medicine where the doctor is god and patient is a robot slave obeying orders just does not work with diabetes. The patient makes virtually all the decisions. It took me quite a while to accept that role and rearrange my medical team. I didn't understand I had too and practitioners are unwilling to accept their new role.
I'd love to see a face-to-face meeting with clinicians and people with diabetes where we can air out our grievances and finally move on to an evolved model where the patient is respected as a real-life professional peer. I have no room in my diabetes care for a big ego patriarchal doctor-as-god endocrinologist. Some doctors get it, most don't.
Sorry for piping up in a T2D discussion but we share some important common gorund.
1. I wish someone had explained carb restriction
2. I wish I had been told that every diabetic is different
3. I wish people did not try to make me feel inferior: I haven't got the 'real' diabetes; I am just a flat lazy slob obviously; I am on a funny diet and have to be omitted from food events.
I agree with the other answers
Thank you JohnG for bring up a point I missed. I wish someone had told me the whole point of BG testing. I was given a meter and told to test my blood sugar and report it back to my doctor. My doctor ignored my detailed logs. Only later did I learn that the meter results were for "ME." I should have been told that I should be eating to my meter, my meter told me in cold stark terms whether my post meal blood sugars were on target and whether my eating habits needed to be changed.
1)I wish someone had told me that it was not my fault.
2) I wish someone had told me that denial is not just a river in Egypt. I was in denial for many years.
3) I wish that someone had told me that I could do something about it instead of telling me what I was doing wrong.
4) I wish that I had been told where to get the support that I needed instead of leaving me to go it alone.
5)I wish I had been told that I must educate myself because trip after trip to the doctor for more pills will not be the answer to good health.
1. I wish I had been told not to expect non-diabetics to understand what it feels like.
2. I wish I had been warned how inaccurate test strips could be.
3. I wish I had been told about online support groups instead of having to go it totally alone.
4.I wish I had been warned about having to prepare for everything and the loss of spontaneity.
5. I wish I had been warned about the expenses involved.
I was mis-diagnosed as having type 2 diabetes at first, so here goes my top 5:
1) You are not alone. This may sound like a trueism, when you consider that more than 400 million people live with diabetes in the world, but it becomes a reality in communities like TuDiabetes, where we are family!
2) Diabetes does not (yet) have a cure. All the acute things you have dealt with in your life, they have a fix (antibiotics, stitches, casts, etc.) Diabetes can be managed, but it takes OUR participation as patients on a daily basis. It can't be managed by your physician alone prescribing you something.
3) A diabetes diagnosis is not the end, just the start of a new journey in life. You will need to change how you go about a number of things, and you will need to learn quite a few things that you may have taken for granted, but it's definitely not the end.
4) Even if you do everything perfectly as part of your diabetes management, perfection will always elude you. It's best to target a range of numbers, than a perfect number, because that will mean you are able to hit the target more often and not become frustrated when you don't accomplish perfection.
5) Even when you can't hit your target (a range or a number), there's always a new day to try things out again. One of the most important things in diabetes: learn to forgive yourself.
Get a complete, dilated eye exam. Type 2 diabetes can exist for a long time before it is diagnosed, so you need a thorough eye exam to know where you stand.
Wow! I was ten and the world of D was very different in 1962. I really can't answer that, but things I wish I had known include:
How to effectively treat a high BG reading--orange juice with sugar added was always the answer.
Complications were terrifying and I knew they were trying to scare me into obedience, so I rebelled, of course.
How to be a young adult, hormonal, with D--man, that would have been helpful.
Mostly, I think everyone failed to acknowledge or help with the mental D stuff. It was all focused ridiculously on control, when the only tools I had was Lente insulin, a syringe and Tes Tape. They thought I would die before 40, What a way to grow up.
1. In my case, the more complex your medical history, the more likely your doctor is less interested in trying to help you with information, education, testing, etc.
2. Before I was diagnosed, the higher my BGs the sleepier I became and "lost time".
3. Now, with testing as my BGs level creep upward, the grouchier I have become and I can't seem to control it.
4. Sometimes it seems like no one has an answer. "It depends..." "That's different..."
5. Why do I feel like no one is listening or at least no one is willing to / or can help me? Is it worth it to go to another doctor and explain my complex medical history? For him/her to brush me aside with "keep dieting/exercising" aka starving yourself even though your numbers are abnormal. Or take this pill even though we know it will cause you problems.
I wish some one had told me how ill informed I was about diabetes and how much I didn't know and needed to know.
> Repeat 4 more times.
> I still (after 20 years) am getting surprised by this condition
1. Carb restriction is necessary, so test, test, test to find out what works for you.
2. Carb restriction is doable and sustainable.
3. Carb restriction and exercise actually help you feel better and give you a sense of control in spite of the diabolical whimsy of this scourge.
4. There is a vast store of knowledge and support in the DOC---go for it---because if you want to treat a diabetic by the book, you need to write a new book for every diabetic.
5. It's the carbs, stupid!
You're always welcome, Terry. The more, the merrier!
- It's not a death sentence. Uncontrolled diabetes may be the cause of heart attack, stroke, kidney failure, blindness or amputations, but well controlled diabetes is the cause of nothing.
- Type 2 diabetes is genetic. You didn't cause this and it's not your fault.
- You don't have to scrap your life plan because of this condition. You can achieve anything with diabetes that you could have achieved without it.
- There is a tremendous wealth of technology and expertise available to assist you in managing and controlling this condition. However, the actual doing of it is your job; no one, no doctor or anyone else, can do it for you. No one knows your body like you do and no one else is there 24x7 to do it.
- You are not alone. There is a thriving support community out there, both online and elsewhere. Reach out to it.
PS.....In support of my #4, I wish I had known this man right away. It would have saved me several months of rage and despair:
I know the question only asked for 5 things, but this one is so important it needs to be added:
- When you fail to achieve perfection (which will be nearly always), don't brood on it or beat yourself up about it. Perfection isn't possible, and holding yourself to an impossible standard helps no one, least of all you. Instead, acknowledge yourself for the things you do get right. When something doesn't work as intended, figure out why if you can, but either way, fix it, learn from it, and move on.
YOU CAN'T FIX YESTERDAY.
1. "You will feel like a failure, but you aren't.". Diabetes is very difficult to control, You will have difficulty getting your BG under control and you will feel out of control, and maybe, sometimes, you will be out of control. It's OK, bad things happen. Life happens. Don't give up!
2. "Diabetes doesn't just effect our bodies; it effects our minds and emotions as well.". The emotional and psychological effects of diabetes are just as devastating as the physical. Go ahead and cry. Go ahead and scream and yell. Give this disease a good cussing out! Don't bury and deny the hurt and frustration. We all experience it, we all go through it and deal with it. We know how bad it is, we feel it, too. You are not alone!
3. "It is life-long. There is no getting out of it. Settle in for the long-haul.". Diabetes is forever. It is a moment-to-moment struggle. There is no breaks, no vacations, no room to breathe. It's all day, every day, 24/7/365. Get it?
4. "Ignore the advertisers and the pushers." There is no cure. There is nothing more effective than balancing diet, exercise, and medication. Keep your A1c in line, just like the doctor tells you. Yes, there are things that can make life a little easier, help keep things in line. But, THERE IS NO CURE.
5. "You are still human.". Diabetes can make us feel like aliens sometimes, and even worse, it can make us feel sub-human. You are still human, you can still do everything any other human being can do...except make your own insulin! You still have all your worth and value! Take the ignorance and bad actions of others and use them to make you stronger. Don't let them grind you down.
1. It takes a combination of changes (lifestyle and medication) to successfully manage T2 diabetes.
2. Having diabetes is not a personal failing.
3. People will have some crazy ■■■ ideas about diabetes. What causes it. How to treat it. How to cure it. Etc.
4. It's okay to dismiss people and their crazy ■■■ ideas about diabetes.
5. I have access to a medical professional (MD, CDE, NP, etc.) who can answer all my questions (no matter how small) and offer personalized advice on how to make the necessary changes to manage diabetes.