While reading all the information coming out of ADA, I saw this tweet. Sadly it is not the first time I hear someone say something similar. For me, it is so incredible that some health care professionals don’t seem to understand how complex living with diabetes is.
Why is that individual in the medical profession?
The one who told me the same comment is an actual health care professional, and mostly ADA attendees are too.
In my case it was even worst, I heard it at an empowerment and advocacy conference for patients of different health conditions.
Wow… just… Wow.
It is a huge burden this disease, mental amd physical. But there is not much empathy or sympathy from the med profession or from fellow pwd really. The emphasis seems to be on you can do anything etc. My life is not even remotely the same and it has taken a big toll. Everything is regulated by managing this.
I have seen this same phenomenon in every branch of medicine that deals with chronic illness. In order to maintain its prestige, social power, and inflated salaries, the medical profession has to pretend that everything is just wonderful for the patients, since if it did not, it would have to admit how flawed what it was providing for them actually was, and the consequence would be loss of money and power.
Pretending that everything is fine for the patients requires being deliberately stupid about what the utterly inadequate therapy available forces them to undergo. Even worse, this deliberate lack of empathy is reinforced by an eagerness to blame the patients for failing to comply with the unattainable management requirements that a failed medical profession has imposed on them, on the theory that the best defense is a good offense. In a just world, every appointment between diabetic patients and their doctors would begin with the doctors apologizing for the dismal failure of the profession to provide anything better, rather than doctors scolding their patients for their inability to achieve perfect blood sugar results.
When I was a new patient at the Joslin Clinic in 1966, I remember a massively overweight doctor there who always appeared in a rumpled suit with half his breakfast on his lapels and tie scolding patients furiously for failing to ‘comply’ with the treatment plan, as he put it, even though the only generally used measure of blood sugar at the time was a woefully inadequate urine sugar test. He obviously couldn’t comply with an ordinary weight control diet, yet he yelled at us for our inability to cope with a much more difficult task. I remember another doctor there giving one of the introductory lectures and saying, with an obvious tone of disgust in hits voice, that he didn’t see how it was possible for anyone ever to have a blood sugar more than double that of an ordinary person, but as we patients already knew, the spontaneous shifts in intrinsic insulin requirements could produce larger changes than that, at least as measured by urine sugar.
I listen to so many people talk about their negative experiences with the medical profession and I thank God I have had and currently have a great medical team. Outside of the horrible doctor I had back in the early 70’s, I have had doctors and CDE’s who get it. When the first question is how are you doing and how is the family, you know they get it. My PCP I think has less understanding to the day in and day out and his answer was quit my job. Duh, I have a family I have to support and I need the medical coverage etc.
And it is so cool when the ones who don’t have diabetes which I think has been all except 2ovee the years, wear the equipment to see what it’s like, or weigh and measure food for a week or test 6x a day, take injections. One of the trials I was in the administer actually did everything they were asking all of us to do, so he knew what it was like. How cool is that?!
There is so much shame to this disease and people think insulin was the cure. Most think all you need to do is take your insulin. But when I say that there are over 40 things that can throw blood sugars out of whack at any time, they have to stop and rethink. Most do understand the 24/7, thinking of everything at all times that can effect ones blood sugar.
So I just smile and try to explain and more on. We will never get everyone to understand how mentally exhausting this disease is. The only way they will understand is if they end up with a chronic condition.
Please don’t let them get you down and I hope everyone can find that medical professional that always asks how you are doing first before anything else!
How are you all doing? How’s life treating you? How’s the family? Diabetes later, life first!
That’s really too bad.
Reminds me why I value this community so.
“I’m so sick of hearing about this diabetes burden thing.”
That’s a failure on so many levels. I guess as human beings our ability to empathize is limited. When attending a conference on a disease condition, I can see where the gluco-normals can get saturated with diabetes and burn out their ability to care, hopefully just temporarily.
On top of that, many providers witness a large slice of the patient population who just doesn’t seem to care when you think they should. I guess it’s hard to get it when your pancreas works A-OK and you can change your eating plans at the drop of a dime.
I’ve mentioned this idea many times and I really think it could educate the gluco-normals, especially the medical credentialed class. These conferences could really use a diabetes simulator that allows the operator to control food, insulin, and exercise and then display how that works with a resultant blood-glucose trace.
I would be entertained to no end! This simulator/video game might be able to open the eyes of those who think they know all about controlling blood glucose. They might realize that we play a difficult game and when we fail, we suffer 100% of the real world consequences.
The essential feature for the gluco-simulator would be a randomizing function, since this would show the non-diabetics that even if you calculate food, exercise, and insulin dose precisely, the glucose output of all those perfectly controlled variables can be all over the map. This is something non-diabetics become progressively more incapable of comprehending the more medical education and experience they have.
I have recently found an interesting website that helps me deal with the burnout aspect of diabetes. (But not how to deal with insensitive others !).
It is more along the lines of mindfulness and doing the best you can within whatever situation you are in. I signed up on the site, and get daily emails that usually have something positive that helps me out. It is not specific to medical stuff, more about relationships and dealing with struggles.
If interested, here is example of one of the articles.
Looks like a nice site but the positivity stuff just makes me feel worse. I’m so sick of positivity constantly being pushed on everyone.
YES, Meee, I agree!
I agree with meee and Judith: The essential feature of every incurable illness is that everyone around you, and especially the medical profession, overwhelms you with encouraging lies which are transparently false, and even though the liars must know that the patients know what they are saying is false, they keep saying it!
In type 1 diabetes, you always hear, for example, the ‘you can live a normal life’ right along with ‘a cure is coming is five to ten years’ lies. Of course there is nothing normal about living with the massive burden of managing diabetes while under the constant threat of lethal hypoglycemia, and having a life expectancy eleven years less than your peers even though you devote a thousand times as much effort as they do to stay healthy is hardly normal.
In heart transplants, when the patient reacts in horror to the news of how short a time the new heart is likely to continue functioning and what a huge risk there is of the toxic immunosuppressive drugs causing kidney failure, the soothing lies come quickly. First, that medicine is improving all the time (false, it has been stagnant now for more than a decade), so the patient’s new heart will probably last much longer than the present statistics suggest, but of course, the immunosuppressive drugs still used to keep the heart functioning were developed in the early 1980s and nothing significantly better has come along since. And second, there comes the lie that the odds of kidney disease developing are actually quite small, but in fact they raise the chance of the patient dying on dialysis thousands of times above the normal risk.
And in renal failure, the standard introductory lie for the patient is always that ‘you will feel much better when you start dialysis.’ Well, you will feel much better than you do in full renal toxicity in the few days before the initiation of dialysis, but you will feel ten thousand times worse living on the machine than you did when you actually had a real life and could do things. Patients are encouraged to think that a transplant will soon be coming, but they are not told that the waiting list can be as long as a decade and it’s constantly getting longer because of the increasing demand for replacement kidneys. Even worse, no one tells them that ‘getting their blood cleaned’ on dialysis only means that their blood will be cleaned enough to keep them barely alive, and not to restore them to normal, but only to about 10% of normal. That this inadequacy of treatment will likely cause them to die or be medically unfit for transplant before a new kidney becomes available for them is also not exactly a topic of discussion. And finally, incredibly, some patients go into dialysis wondering when they are going to get better, since no one has ever bothered to tell them that the treatment is not curative!
I think in part all this lying is because no one really knows what to say to someone faced with a hopeless diagnosis, people are afraid of the emotional response that will be evoked by telling the patient the truth, and the prideful propaganda machine of the medical profession feels it cannot admit to any failings, since otherwise the general public will cease to accord it the prestige, power, and money it demands.
I have definitely run into a crazy number of insensitive medical professionals, it’s really frustrating because it makes the difference between effective treatment and ineffective treatment. I started being a lot more vocal about my treatment and daily life. Especially at the Dr’s office (I do like my current Dr). If they suggest something I will talk about how that actually fits in to practice in my life.
In the past I felt like the Drs gave advice that I just couldn’t put into practice and it was just one more source of feeling like I was failing at taking control. Now I’m more vocal about that.
It’s the same with family and friends and even co-workers. I don’t whine about it, but I don’t hide it either, when I’m dealing with something I just state the facts. I’ve found that I get a lot less insensitive comments, and honestly it just takes the burden off ever so slightly. I’ve tried to play it down in the past, but that is just isolating and makes dealing w it harder.
It is something that is hard to see or even express to people who do not see you everyday. My ex-wife kind of gets it now 20 years later, how and why I started to become more and more selfish with my time. I’ve really been aware of it for last 15 years. New GF understands it because her parents and niece had it for many years. I try to catch myself and stop myself from saying “no I don’t want to do this or go there” but it seems to get harder and harder. Friends don’t quite get it and ask why I did not go to this or show up to that. People I work with for years understand it as they see what you have to do each day or how many times you have to see endo (4 times a year) and see the cumulative time it involves each day. Like everyone else I do find my Endo just brushing past the issue and this (obviously the norm) surprised me (but I guess it really is hard if they don’t see you everyday, like I said.)
I can’t be burned-out. This is my life. It is what it is and I deal with it as best as possible. Giving up is not an option.
Have you ever thought of the opposite happening? When long-term prisoners are finally released, they often feel lost and adrift because they have suddenly lost the rigid structure which controlled every minute of their day. So if diabetes were ever cured, perhaps former diabetics would suddenly feel lost, given that there was nothing to record any more, no need to calculate anything in order to eat, no moronic medical supervisors to deal with who knew less than they did about what they were supervising, etc.
ah…no. I went from testing 17x a day down to about 4-6, because of having a CGM. I don’t miss the frequent testing, ergo I don’t agree with your idea abut diabetics feeling lost if there was a cure. I’d just put diabetes behind me like a chapter in my life–like when I went from 15+ years of miserable stomach issues to none, because of modern medications.
I agree with @Dave44 Right now I am up because my BG is higher than I want it to be and need to see if the insulin I took was enough to bring it down so if diabetes were cured I really wouldn’t miss the lost sleep. If diabetes were cured then I would have so much more extra time and energy to devote to other things not to mention eating like a normal person without having to calculate everything or dealing with the consequences if I do something incorrectly.