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Are there words (or messages) related to diabetes management that that have made you feel supported, encouraged, and listened to? Please explain in the comments.
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Basically, DRAW.
Discipline to do what ought to be done.
Reward. You must reward yourself for things and accomplishments well done.
Awareness and awe. For the desultory and wandering things that cells do, sometimes for your benefit, and, alas and alack, sometimes for your detriment and even death.
Wonderment. Reality has not been kind to a lot of diabetic predictions. But infinity must begin somewhere. There’s a George Orwell quote I like to go back to, about how so many qualities that we like best in the human character — like creativity and courage — are activated by adversity. 👏🤺🏋️♂️
From the Endo wo got my Dx correct ( I had been mis dx’d with T2D) “You can do this. You are intelligent, disciplined -referring to my career as a ballet dancer – and you have a ‘mouth on you’ – so use it. Don’t let the over generalizations and stigmas get to you, and fight, even if that means fight with doctors”
Yourr time in range is very good. I have one patient who is better but he is a GP.
“You are your own best clinician.”..from my first Endo.
My daughter always asks what my numbers are when I get bloodwork done. Then she compliments me on a job well done! My oldest grandson who works at a hospital tells me how amazing I am doing. He sees a lot of uncontrolled diabetes.
My friends are all very compassionate about what I have to deal with on a daily basis. In particular, I have a friend with a daughter who is a T1D. I get lots of hugs and words of encouragement from her.
The doctor who first diagnosed me with T1D told me that if I control my sugar levels I will live a long life without complications. That was 29 years ago and so far, the only complication was that my cataracts matured sooner than expected. I don’t consider this as a major complication since my allergy treatments also contributed to the formation of cataracts.
My dad, who was a doctor, said to me (after 15 years), that he finally understood that it’s something I can’t take a break from. Diabetes is a 24/7 thing I have to think about ALL the time. There is no respite. He said he finally understood.
When my endocrinologist says “you are doing a fine job”, at times when I feel I am not.
My family is very supportive. I am a superhero to them.
With medical people, not at all. I’ve been diabetic for 35 years now, have taken the ball and run with self-care since I was diagnosed at the age of 36, have no complications to date because of the self-care and management (and doctors’ help), and have never had a medical person say “good job,” Or: “yes, I see why you made that insulin ratio change – I agree with that,” Or: “Your commitment to exercise for so many years has really helped with your diabetes – good job.”
Mostly, my doctors over the years seem a bit taken aback by my self-responsibility, as though they hadn’t been trained that this is the goal.
For the past fifteen years, my stress about doctors appointments is greater than my stress over my BGs, because of implied or explicit negative messaging. My impression has been that the training has still been: “Diabetics won’t take care of themselves, so we have to stay on them, no matter how tough you have to be.” I would say with this approach, the end doesn’t justify the means.
I do have to push back with most doctors and say “please rephrase that so it doesn’t sound so negative or aggressive” and then I’m looked at as a difficult patient.
It’s clear to me that the old doctor training about diabetics is still there.
Is there any plan in the medical community to change this?
Well said. In my first response to today’s question, I shared what my first Endo said to me (after finally getting the correct T1D Dx – I was 30 years old and originally Dx’d with T2D. Found in a coma by a neighbor, ergo the correct Dx). Your comment truly hit the nail on the head. I once asked an Endo “where in his training (residency? fellowship?) did he learn that all people Dx’d with any type of D, MUST be dx’d with 3 co-morbidities: Stupidity, Laziness and a Propensity to Lie”?
We do the best we can to manage an uncontrollable disease.
“Your numbers look pretty good”, from my endo
Yes, stunningly easily: “…I am a Type 1 Diabetic myself. I have been Type 1 for over twenty years…” Less experience has serious credibility, gravitas, but at LEAST 20 years (as one of us) is a strong fundamental basis for nearly blind trust. Treating us is one thing, BEING one of us is far, far more value and serious credibility almost bordering on blind “faith” because of that experience they will NOT do us harm. The difference between being a voyeur of an event and having gone through it, again and again and again yourself. I want peers NOT “academics” caring for me medically. Baby nurses, beginner (academic knowledge) terrify me most… hand to hand should not be required for hospitalization to protect ourselves from protocol(s) designed SOLELY for our T2 “cousins”, the vast majority of the diabetic community. We share the name but little else. I want peers with experience to feel supported, encouraged, heard. When I say, I’m “danger low” ACT solely because I say so. Prove it later if, if you must…
“You can do this. You can take care of yourself and live a long. happy life without complications.” I was told this by an old endo and he was right. I’m coming up on 60 years with T1D and still have no complications! By giving me the info I needed to keep my blood sugars in range, he gave me the power to take control of my life with T1D. Not many endos will do this, I have found out since.
Went yesterday to Joslin Clinic and I had a good report. Was told I do a pretty good job.
Wow, I’m so sorry, you have a tough life. (Someone who knew what T1D actually is.)
You are doing amazingly well managing your T1D, especially given the balance with your other autoimmune disease. I congratulate you. (My endocrinologist.)
“Your pancreas is non-compliant, not you.” – Dr. Levetan.
Excerpted from: https://t1dexchange.org/t1d-hormones/
For me, a lot of times it is less about specific words and more about my doctor just being positive even when my numbers have trended worse. A smile goes a long way.
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