CALLING all members! We want to share your thoughts

I struggle with people’s misconception that diabetes is like any other illness that can be simply treated by your doctor and some medication.

I wish people understood that diabetes is a 24/7 way of life. That we must understand, anticipate and react to the dynamics of our daily life and our body’s requirements on a continuous basis. We must ALWAYS be aware, vigilant and responsive

Diabetes has taught me a lot. More than I ever wanted to know. But it has also taught me a lot about what I am capable of as well as a new level of understanding and empathy for others facing life altering situations.

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1- a living hell- pray you never get it
2-nothing that is worth what I go through with this disease
3-so many but for me it’s that adults DO get type 1 diabetes
4- I’m not here much anymore but I’m happy to be able to ask specific questions and get feedback here.

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I wish people understand that diabetes is…ALWAYS changing-- what I eat, exercise, medicate one day does not control diabetes the next day. It’s more than a medical/ physical disease, it’s an emotional one too.

Diabetes has taught me that EVERYONE should eat good food, exercise, and keep stress levels down… my disease has proven that fact!

My community is my spouse who has to “live” with this disease too and the medical reps selling new devices/drugs to help control diabetes…they love to listen to an actual person using devices/medications and living life. Easier to sell and believe in the product!

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I wish people understand that diabetes is…a complicated disease and patient has to deal with it 24x7.

My diabetes has taught me that…punctuality and discipline go a long way in life, not just for diabetics.

I struggle with people’s misconception that diabetes is…an ‘excess sugar’ disease and less sugar is all that a diabetic needs.

The diabetes community is my…invaluable asset in this life.

I wish my old boss would have just let me take care of my diabetes. With the aid of HR, she used diabetes (ineffective and modified) accommodations for intimidation and retaliation. But then she was a psychopath.

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I don’t expect people to know anything about diabetes.

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I wish people understood that diabetes is unlike other incurable diseases in that not only is there no cure, but there’s no “treatment”.
What I mean is there’s no treatment the way there is with most other diseases. We can’t “medicate” the disease and then “be fine” until time for the next dose. It’s not as simple as remembering to take our meds and never eat sugar.

People don’t understand that it is a CONSTANT balancing act and sometimes, the “medicine” we need may be, in fact, sugar.

They don’t realize that after a meal, our number may go up for a short period (because they don’t know that’s how their own bodies work too, but with a functional pancreas to do all the thinking & their own non-synthetic insulin to do the job).

They don’t comprehend that just because our body responded in a perfectly acceptable manner to X amount of insulin:food ratio yesterday doesn’t mean it will do the same today.

They don’t know that stress and “nerves”, depression or even excitement can cause changes in our levels or that our “number” can change from one moment to the next. (I detest when someone asks how my sugars are today, as if it will be the same at the end of the day as it was when I got up. :persevere:)

If only people could realize that living with diabetes is like riding a virtual roller coaster except we can’t see the track.

I just can’t use the word “controlling” to refer to coping with diabetes (instead of “living with”) because honestly, if we added up the actual amount of time our blood glucose is in normal range, it would be a very small percentage AND can you really call it “control” if even that perfect number is subject to change?

The only predictable thing about diabetes is its unpredictability. Not that we can’t do whatever we set our minds to, but it takes SO much effort and can change in a blink from a good situation to bad when the unexpected happens.

That’s what I wish people understood.

:two_hearts::muscle:t3:

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Great to see you around @Geannie_George_Gray

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Expectations vs. wishing and hope

I think how we manage our expectations does add and subtract from our happiness. I’ve found that managing expectations can really help protect me from undue disappointments. The reason I’m making this comment, however, is to defend the role hope can play in our lives managing diabetes and beyond.

Hoping and wishing can play a healing role in our lives. I hope and believe that, in general, things are getting better with diabetes. This includes the scientific/technical as well as the social progress.

The social progress regarding diabetes awareness, like most social measures, takes time to change. Some of these changes are measured in generations – longer than one person’s life.

But that does not mean that we should abandon hope. It’s hope that precedes many beneficial changes in society. Hoping and wishing creates motivation to reach for a better way to be in our social world.

Pragmatists have often laughed at idealists as “living with their heads in the clouds” while not acknowledging current circumstance. I think we can still hold onto hope without losing sight of reality. I choose not to adopt an attitude of holding no expectations for the better since living without hope seems corrosive to the human spirit.

There is a middle ground here. I may not expect any random member of the public to understand the challenges of living with diabetes but with patient education by people like me, we can then hold onto hope for a more enlightened society in the future. Wishing and hoping do have real world power. It’s not realistic, however, to expect that wishing and hoping can deliver that better society today.

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I always thought my golden years would be golden. At 61, I wish I had done more when I was younger, as I was continually told, to better my situation for the future.
Who knew? I was invincible when I was young. Senior years were so far away. I didn’t listen to the advice of those older, after all, I was young and knew better. I am paying the price now. More like rusty years for me.
It is what it is. Time passes and can’t be changed. I try to carry on as normal a life as possible, but accept the fact that it is a new life I now live. I must accept it and move on.

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I wish people would understand that diabetes is 24-7 and comments made about what I’m eating or not eating are really stressful, because I already know what I can and cannot eat !
My diabetes has taught me that all things are possible, as long as I deal with it quickly! Lol. Highs.
I struggle with peoples misconception that diabetes is a competition and comments like “I’m a better diabetic than you” really incite me to riot!
The diabetes community is my support system.I read comments on this website and it makes me feel like I can do this–this journey of being a diabetic and all that it entails.

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Garry 2 Know what you mean . for a lot of people the senior years are golden they have good families money
time to travel. and their are people with none of that. had know idea that I would get db at 60. had know idea
what it could do and will do to your body. its is impossible not to think about it . had to have blood work for surgery and found out about it wished I hadn’t learned about it. but it has gotten me eating better and working
out a little more but my happiness has gone way down. most food that ilove is now looked at as something that
could ruin my health not fun. their are a lot of people here that seem to be handling it well they inspire me to
get better with this . like you said accept and move on.

I wish people, all people, and especially T2 people would realize that you can’t medicate your diabetes troubles away. It takes a total commitment to be successful.

I read an article in the New York Times from 2000 yesterday which had an interesting quote in it: " ‘‘It’s been portrayed as a manageable disease – that if people take insulin, if they follow their diet and if they follow all their regulations and restrictions, everything will be fine,’’ said Ms. Butterfield, who is 40 and now lives in St. Louis and New York. ‘‘Therefore the implication is, if things go wrong, it’s because the person who had diabetes did something wrong.’‘It’s the disease that’s the problem, not the person,’’ she said."

This was such an eye-opener for me! She articulated what I wanted my students and fellow lecturers to know about type 1 diabetes when I worked as a lecturer in medical subjects for Nursing student!

This is powerful.

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