I've been feeling a bit frustrated lately with the HCPs I work with in my diabetes care. Actually, it's been most doctors I've worked with over any issue, whether with my children's health, or my own. I constantly feel that I am viewed as a statistic rather than an individual. I also feel that my 20+ years with diabetes counts for nothing, and that my experience is of much less value than what one can read in a textbook. For example, when I change my Dexcom sensor, I usually have pretty great accuracy in the first 24 hours. I know that isn't the case for everyone, but it is the case for ME. However, I can tell my doctor that until I'm blue in the face, and they still come back at me with "The first 24 hours are ALWAYS inaccurate." Well, no, they're not. I've also been told that I can't possibly be diabetic and deliver a baby at 37+ weeks, because babies are ALWAYS too big. Well, no, they're not.
Do any of you run into this collective mindset? And how do you get around it? Just buck the system and do what you want? I don't like to be labeled non-compliant (and I also like to get my prescriptions filled, ha!), but this kind of attitude really frustrates me. PLEASE treat me as an individual, not a statistic.
Hey Shelby. I hear your frustration and have had the same feelings over the years, but fortunately, it's been more the exception than the norm for me. I'm not excusing the way you are being "treated" but I do believe that a lot HCP's try to treat diabetes as objectively as possible even though the disease couldn't be more subjective. They only know what they've learned out of a book and a lot of times that's what the recite. Because of this, a lot of the care, tweaking etc falls on us and even our doctor's can't quite understand or grasp the situations you are describing above because that's not what their education taught or what the instruction manual says. I'm not criticizing the HCP's, just stating my opinion. One of my friends is an RN and we were talking one night and I was telling her about something I was doing with dual wave boluses and she literally said "oh my god what are you doing? You shouldn't be doing that!!!! That isn't what I learned in school, that's not right!!!" I laughed it off and told her that just like a house, the diabetes foundation is standard, but the rest of the floors, rooms, paint, decorations etc are all individualized and subjective. She got it and apologized (which was necessary).
I don't ever worry about my Endo thinking I'm being "non-compliant" because I am the one living with this 24/7 and he is there to help but not preach. I feel very fortunate for this.
Keep your head up and try not to let it get to you and although my Dex is more accurate after a couple days, I have heard others who have great numbers on it within the first 24 hours of insertion, so you are certainly not alone!!
I constantly feel that I am viewed as a statistic rather than an individual. I also feel that my 20+ years with diabetes counts for nothing, and that my experience is of much less value than what one can read in a textbook.
I hope this is an unfortunate side effect of the way the medical system currently works rather than something specific to your HCPs, as you put it. I am afraid if these HCPs have a chronic case of STUBRS (STick Up Butt Rigidity Syndrome) I don't know what to suggest other than switching to a different practice in hopes of a better experience.
The approach I think I usually try to take is to keep in mind that your doctors are to a certain extent being forced down a path as much as their patients. They do what do because they think it's the best, most effective way to treat their patients. Not really true, but it's how they get to thinking.
Never try to argue opinions with them unless you also have an MD and experience equivalent to theirs. Instead try to get them to argue with themselves. What a doctor should always be doing is asking questions. If they fail to do that then the next best alternative is to have the patient ask the questions to help the doctor to remember to think through what they are doing & why they are doing it.
When they say "The first 24 hours are ALWAYS inaccurate." try something like, "Well, that's not how it looks to me. Could you show me the inaccuracies during the first 24 hours in my CGM & BG meter data? Show me what you see that I'm missing?" (Of course, you'd need to have a comprehensible record of you Dexcom and BG data to do this with.)
When you disagree with something they are saying, make the disagreement as specific as possible. Don't simply say "You're wrong". Doing that questions their fundamental worth & experience as a physician. Something more like "My understanding is different." or "My experience is different." or just "It has not worked that way for me." takes it from the general to the specific. It also emphasizes that while they may know the statistics, you may be one of the outlier points on the graph.
I hear you both, mikep and iJohn. What I find so interesting about this phenomenon--and it has been across the board with nearly every practitioner I've worked with, both for myself, and extensive issues with my children's health--is that their perspective doesn't seem to change, even after years and years of interaction with patients. Wouldn't the time spent with hundreds of patients show that there aren't many 'textbook' patients, but that we are all unique individuals with our own needs/approach to our health? I realize there are norms and parameters that provide a framework for care, but I wish HCPs could work with more flexibility within those parameters. Of course, I do take a proactive approach to my own healthcare, but sometimes I feel as if I'm a child being scolded, because I'm doing something outside those norms. I do feel it's a byproduct of our current healthcare system, unfortunately, and not likely to improve anytime soon. Thanks for your replies.
I hear you! I was so discouraged when I went to my first Endocrinologist up here at DHMC when he declared I was "sensitive to my insulin" and that a TSH is the gold standard in thyroid care. Just because I am not on 1000s of units of insulin, does not necessarily mean I am sensitive. I exercise, I try to eat balanced, I take Symlin (at the time)at every meal, and I take metformin. Also - TSH is not the gold standard.
Then my primary is freaking out because I have an A1C of 6.2%!
I am not a statistic!
And then my new Endo does not want to see me for a year - so only one A1C is ordered instead of 4 times a year.
We have to constantly be our own advocates these days - and point out the not so text book applications based on our experiences....
my primary is freaking out because I have an A1C of 6.2%!
I guess a lot depends on the context.
Frankly, I think the physicians I see would be doing dignified and professionally responsible cartwheels if I came in with a 6.2%. Back in the middle of October it was 8.0%. After starting to use (Medtronic) CGM it was down to 6.5% as of last week. Hoping that continues.
Of course, the physicians that I see are at the VA. I think the way Dr Feuerstein put it the last time I was in, is that they see a much wider spectrum of diabetics. I took this to imply they have more than a few patients who appear to just not give a damn, even after organs start failing.
Back in the early days (mid 1979?), I did an overnight stay while being shuttled around for medical evaluation at a (Air Force?) medical facility on one of the pacific bases. (I can't recall which one.) I remember heading out to breakfast in the morning and bumping into a borderline obese Chief Petty Officer who was also there for diabetes related reasons. He was heading back to the hospital carrying a pizza box. (Breakfast maybe?)
I told him the med staff was looking for him to give him his morning (insulin?) shot. His response was he'd get around to it after he ate.
Thank god this is not the case for me. I feel really sorry for you, Shelby. I have noticed, that both me and my mom ( i was dxd at age 8) have always come across to our drs very honest and also informed. if you show the docs how it is done, that can sometimes help. although it looks like you have already shown them a lot.
idk, maybe i am just really lucky. but if my doc sees that i am informed, on top of the game and show him my results/hard work, i feel that they take me very honestly and listen to me and my experiences.
hugs
Hi Shelby. In full disclosure I have not read this full thread, however, no one in medicine listens.
My endo wants me to run BGs at 180 or above. I refuse. My PCP will prescribed insulin, but has no idea about T1D. I hang onto the endo as I need her to prescribe pump and CGM supplies. Honestly, not for much else. Unless something extraordinary happens, I see her once per year.
I rely on myself. I have to. I have been T1 for 53 years now, so I have some experience. I will not run an A1C of 7. High BGs freak me out. My endo believes I am hurting my body with an A1C of 5.5. I don't believe it and neither does Dr. Bernstein. I know my own body--most of the time--better and understand more about MY diabetes.
Do I have problems--check my threads. But I have found this site to be amazingly helpful and I am more assured by their answers than my doctors.
Spock - Thank goodness you are not listening to your Endo!My primary freaks out if my A1C is at 6.4 or 6.2... as it must mean I am having too many lows... UMMMM - nooo... I am on a pump and am not afraid to adjust my doses - I also exercise and eat pretty well....I am trying to get to 5.5....lower carbs....
My heart is broken. So Spock would just say "Beam me up Scotty." And if I live to 83, I would certainly have lived long and prospered. I have about 20 years to get there. Wish me luck!
I have continually been told to raise my A1C. Had my endo request that I lower my basal by 25% and not correct expect at meals and only over 200. Oh, and let it ride for 30 days without changes,
Lasted one agonizing week. After 2 months, I have actually lowered my basals by 20%, piece by piece by piece.
I can relate to exactly what you are saying. My docs know a teeny bit about diabetes, they get about 4 hours in med school, and most get the rest of their education about diabetes from drug reps. So I have realized very early on that I will know more about my diabetes than they will. I also found that when my children were little, that I knew more about them than most docs did.So I do a lot of my own education, a lot of my own theroizing about my diabetes from others, from diabetics and reading. I also hate to be labeled non-compliant, but if that's what it takes to get what I need then I will be non-compliant. Actually I prefer to think of myself as knowing me and my diabetes. I can't blame all nurses or med-professionals who work wit the docs, they want to keep their jobs, too.. My cure for this is to tell them straight up that diabetes as a disease is pretty much the same, but my diabetes is not the same as the last diabetic they saw, and then I give them examples. And if from there they can't get it, I start looking for another.
I did explain to her that I test 8-10 times a day, was getting a CGM, and possibly the Animas VIBE pump with the G4 technology built in. I do not get a lot of lows. I could see being alarmed if she was looking at my readings and being alarmed by seeing a lot of lows- but she does not look at my numbers!
She would really freak out if I were in the high 5% range....LOL.
Luckily my Nurse Practitioner and Endo have a more realistic and hands off approach and would never tell me to decrease my insulin or meds unless I was truly having a problem. So that is why my primary will not be helping me with my diabetes.
Here's my weekend story, and I will say that I don't get freaked out easily, but these docs and coaches, etc do tend to freak me out. They have set me free with the promise that they would be here, "just in case". But this came without any warning, and I wasn't prepared with questions or thoughts about it. In my life there is always a plan even if it is plan XYZ...there is a plan. Well this has stressed me out so much that the old food gremlin crept in and the "I don't care" came through the door right after that. So my numbers have been in the dumpster high and that caused more stress. I am done. I got my big girl pants on and retook control over eating, exercise, meds and insulin. Would I go back to them, only for the tests that my insurance covers....it is much calmer that way
She would really freak out if I were in the high 5% range....LOL.
I'm not sure why, but I completely misunderstood why your primary would be freaking out over your A1C. For some reason I thought you were saying your primary thought your 6.2% A1C was too high.
The only time my endo made a comment was when I got a rogue 5.0% result. I'm usually around 5.5-5.8. She didn't scold but made a note that maybe 5.0% might be too low.
My internist occasionally talks about diabetes and really did a great job caring for me in my pre-pump/pre-CGM days. He just doesn't understand now that my problems can't be solved by a bigger bedtime snack. In the NPH and even Lantus days, I used to eat a bowl of Cheerios at bedtime and usually wake up 80-110 the next morning. My basals are so low now that I can eat nothing without a bolus.
Since getting the G4 two+ years ago, I have not had a low that I needed help with. CGM is such a game-changer.
