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Are there words (or messages) related to diabetes management that have made you feel judged or not good enough? Please explain in the comments.
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1) “Non-Compliant”. The term offends SEVERELY! Simple/easy (on any level), so called compliance would be the rule, not a strange exception. 2) “CONTROL”. Control is a delusion. You do not control a sentient & malevolent fire breathing dragon. Management may be possible, control is not. COntrol contend severe judgement. I reject the idea. 3) “Not doing what we’re telling you…” What you are saying does NOT work outside of your fertile imagination. Academic, control on paper never matches the 180 factors we choose moment to moment to stay alive 4) “Quality of Life (sic. w/ T1)… what the hell is that?! DIABETIC BLISS does not exist, and until it does, try to pretend to explain what “quality of life” we might truly have. 5) Healthcare TEAM. Team what freakin team?! No consistent doctors, nurses, specialists exist. They rotate according to our insurance coverage. The billing deartment might maybe t
“You do not control a sentient & malevolent fire breathing dragon. ”
Thanks for this picture. In fact, I’m going to share your whole statement with a friend whose doctor thinks she may have prediabetes. The doctor wants her to stay under 100 all the time. She’s wearing a CGM.
“…channel Dr. Levetan:
āYour pancreas is non-compliant, not you.ā
From
https://t1dexchange.org/t1d-hormones/
Yes – because you are not in perfect control you are a bad diabetic- and non-compliant. You must be doing something wrong!
When I explained that I had Type 1 the person said, āoh you have the bad kind!ā
“Should you be eating that?” I usually blunt the comment by saying, “It just means more insulin”.
About 1 year after diagnosis, 1997, on MDI and had an A1C of 7. I had just gotten a new Endocrinologist, insurance required change. She railed at me that my control was bad and I was not complying with everything I needed to be doing. She zeroed in on my written records and pointed out every high and low and said that I had to do more. I left so defeated- and immediately started to look for a new Endo.
Slowly the endos are learning not to say those types of things. It makes the appts much better and believe it or not my endo, and he has T1D also, told me for the 1st time he was happy with what I was doing. Wow, that helped me far more than he can know.
1) “I mean, who would want to be on insulin? That’s crazy.”
Me: “I sure do, beats death.”
2) “It’s hard for me to deal with your diabetes when you’re over for a meal – I have to answer all those questions about the food I made. Then sometimes, you insult us by bringing your own food!”
Me: “Yeah, pretty sure it’s 100% harder on me. I’m the one with organ failure and no cure. You?”
Most comments pertain to the food that I eat, such as telling me I can’t have any dessert or anything that has sugar.
Judged perhaps, but being good enough is in my mind, not someone elseās. I try to take statements that could be interpretted that way as an opportunity to educate those willing to take learn or correct those that arenāt. Otherwise, Iām allowing someoneās ignorance to affect my knowledge of myself. Of course, some people are willing to wallow in their ignorance, to them I try correcting once, then walk away as they arenāt worth my time or effort.
āYou are not supposed to eat thatā. Are you sure your allowed to eat that?!?!!
Usually, the person saying that shouldn’t be eating “that” either.
Mention of a pump and, “why are you not on a pump” makes me feel judged. I’ve managed quite well with syringes for 50 years.
A consultant physician informed me my overnight BS was ridiculously high. I took exception and informed them their comment was ridiculously unprofessional.
When I was first diagnosed and for many years following, my doctors always asked about my blood sugar control. I always felt judged because, as you all know, there is a lot about T1 that is entirely out of our control. I was always anxious going into appointments because I often felt out of control in at least some aspects of my T1. When my endocrinologist switched to using the word “management” it changed something for me. I am no longer anxious before appointments and since I now talk about my T1 management with my other doctors, they are starting to use this word. For some reason, for me, it removes that aspect of being judged. I am simply managing a disease over which I sometimes have little control.
Well said, Keira!
My daughter made a comment about injections I front of people (done discreetly). And sometimes people will comment about food choices. Or saying oh can you eat at this restaurant. Annoying.
OUT OF CONTROL – quite disheartening when you think you are giving T1D your all.
Fortunately, I have not heard those words for LONG while.
Theoretically, this could be almost anything based on what is said and who’s saying it.
The blame game – – being told that I need to “take better care” of myself, or “get better control” of my diabetes. Also, I’ve been told that I must eat too much sugar since I have diabetes (or that my mother must have fed me too much sugar!). I’ve even had doctors who told me that I was “uncontrolled.” This was especially disheartening when I was going through menopause and was looking for help with my fluctuating blood sugars. I felt blamed, like I was doing something wrong, when it was my fluctuating hormones that were the problem.
I think I’ve gone on enough on this subject, but yes, there is a lot of judgement out there. Both from the medical community and the community at large.
I hate being called “a diabetic” or “diabetic”. I am a highly intelligent, educated and fully integrated person who has diabetes. The name of the disease I live with is called diabetes. Do you call a person who lives with cancer in their body ” a canceretic?”
Control / Uncontrolled
Compliant / Noncompliant
(Management can get to me sometimes if I’m feeling especially vulnerable.)
When a certain someone sees me eating a piece of usually chocolate, but can be any small treat: “Does your doctor know you’re eating that?”
When anyone mentions what I’m eating (in any context and any words).
There are a thousand and one messages and words related to food and food choices that make me feel judged.
“Diabetic,” ” with diabetes”, none of it bothers me. If someone were to dare to judge I dare them to keep up.
I’m so lucky the the only part if me is an organ weighing less than 1/2 a pound. The rest is kicked by butt, I’m having a ball with life. Not always easy but maybe things shouldn’t always be?
I do not like the word, ādiabeticā. I feel it is a huge label that defines one via an illness. I may be unique in this view- Iām still in the closet about having T1. I faced and have faced some serious feelings of being different and judged as a child w T1 when my mom felt for safety reasons many needed to know that I had T1. I didnt like special / different attention based on a diagnosis. I wanted to fit in. Most conversations by someone who doesnāt have T1 and voice anything potentially less than offend me.
In control, not supposed to eat that, can you eat that?, that sort of thing.
I do NOT like the term type 1 and type 2. Iāve been told I could turn it around and heal it if I lose weight (Iām 130 lbs) and eat right (I do)
Iāve been told I shouldnāt be so affected and sick w diabetes. Type 1 and 2 should not both be called diabetic!
are you supposed to have that
āThese numbers look good, if they are real.ā
In response to BG readings all written in same pen color in old school log book.