The Bad Kind

It's almost a cliche to say that the most annoying response people make to learning your child has Type 1 diabetes is to say, "Is that the bad kind?" To everyone in the know, that level of ignorance is bothersome on many levels, which we can summarize via the various responses that pop into my head (and sometimes out my mouth, depending on how annoying the questioner seems):

• "Well, there IS no 'good' kind of diabetes."
• "If you mean, does he need to take insulin for the rest of his life, then yes, it is. But there are worse things."
• "It is what it is."

So I was not terribly enthused when I spotted a Medscape article entitled, "Young Onset Type 1 or Type 2 diabetes: Which is Worse?"

After reading it, however, I found a number of encouraging points. For instance:

Nevertheless, the clear message is that not all forms of diabetes are equivalent. Despite the common manifestation of hyperglycemia, the disease takes many forms, the differentiation of which will improve our ability to care for all patients with diabetes.

YES! YEEEEEESSS! Get that message out to GPs everywhere. They are different diseases. The expectations and prognosis for treatment of T1 and T2 are not the same. You cannot look at a patient in her late teens who is thirsty and losing weight and peeing all the time and feeling fatigued and say to yourself, "She's too old for Type 1, so it must be Type 2 — I'll give her a script for metformin and send her on her way with an admonition to eat less sugar and get more exercise."* You have to do the due diligence. Test for ketones, my friends. Test for autoantibodies. Assume nothing in your diagnosis! And do not treat the one as you treat the other.


*Actual response of a physician to a distant relative — whose aunt, a nurse, fortunately refused to accept that, which is good because the girl was in DKA.

I hope my T2 friends will forgive me, but I was also pleased to see this:

Despite a statistically shorter duration of diabetes and similar glycemic exposure, macrovascular complications were much more common in the type 2 diabetes cohort (ischemic heart disease and stroke), but there was no difference in retinopathy or renal function. Death was also more common among patients with type 2 diabetes, and it occurred after shorter disease duration.

Now, I would not wish vascular complications of diabetes on my worst enemy. But I also have a T1 child who is about to turn 7, and who has now lived with diabetes for 5 1/2 of his 7-years-to-date lifetime. Do I fear those complications? DAMN RIGHT, I DO. Is there a part of me that also fears I may bury this sweet boy of mine someday, long before he reaches what would otherwise be the end of his life? (Do I really need to answer that?)

Am I therefore a tiny bit relieved to know that, all other things being equal, he has less likelihood of developing those complications than he would be if he had T2? I confess that I am. I know that relief to be somewhat illusory — there's nothing in this article to identify whether the T2s on average had better or worse compliance than the T1s, what the two populations' overall Hba1c values were, etc. — and those things do make a difference. But I feel it nonetheless, particularly given that I have had good luck in keeping Eric's a1c within close reach of the ideal. I take whatever encouragement I can get wherever I can get it.

Consider the social and media garbage that surrounds T2 — the not-so-subtle hints that T2D represents a failure of "self-control" or "willpower", the messages of faux reassurance that you "can beat this disease" accompanied as they are by the underlying caveat, IF ONLY YOU TURN YOURSELF INTO SOMEONE ELSE THROUGH HEROIC MASOCHISM (Yes, Biggest Loser, I'm looking at YOU, with your in-the-title slam that you only win if you slice yourself in half, and if you don't, well...). All with a side of scorn — how many of us have seen the "math problem" meme below?


I go freaking BALLISTIC when I see this. And yet deep down I am very glad that if someone gives me the “what did you do, feed him straight sugar in his bottle?” line, I can hit back with the (true) response that Eric’s diabetes is autoimmune, has nothing whatsoever to do with what he eats, and in fact he was still breastfeeding when he got sick. I usually try to make the point, as well, that even T2 isn’t “caused by sugar”/carbs given the strong genetic component involved… but for those ignorami who have been put in their place when I enlighten them as to the nature of Eric’s T1, any additional info I would like to impart is drowned out by the beat of their hasty retreat.

When you look at stuff like that, how can you honestly call T1 “the bad kind”? Yes, it sucks. Yes, it causes anxiety and sleepless nights, and no, I don’t mind people elevating me to the status of WonderMom when they hear what a routine day with diabetes is like, because there are days it brings me down so low that any boost, deserved or otherwise, is welcome. But if I had to manage a child with T2, I should think it would be infinitely worse.

Think about it: The needs of T1 are quite simple and clear-cut. Food? give insulin. Exercise? give food. Test, and test again. The math used to calculate basal and bolus ratios is beautifully simple, even during growth spurts. And underlying all of it is social support: you’re not to blame for your child’s illness, what a tragedy it is, you must be an incredibly strong/smart/patient person to be able to deal with all that day in and day out. For the rest, you do what any good parent would do, and on it goes.

Now imagine attempting to accomplish the same goals when you have to motivate your child to eat healthy foods and take medicines that it’s quite possible he or she does not want anything to do with. Heck, I spent 2 years in a constant battle with Eric to let me give him Tylenol, just because he did not like the medicine’s color. Eventually I found a store that sold the dye-free stuff, but still… if I had to give him oral hypoglycemics, I think I’d just want to cry all the time. Imagine attempting to promote a daily exercise program when you yourself ahem are not on that wagon and really don’t want to be given cranky knees, weak ankles, a wee bit of asthma, and an abhorrence of feeling sticky. “Do as I say, not as I do” has never cut the mustard with Eric.

Imagine, too, trying to manage your child’s diabetes and assess his or her blood sugar levels when your insurer thinks a single test daily — or no testing — is appropriate, yet your kid’s pediatrician bitches you out because the a1c comes back at 8.5%. (Pediatric endocrinologist? You don’t need that, he’s “only” got T2D, and we know how to manage that in primary care.)

Imagine doing all this in the context of social messaging that derides T2s as “fatties” (regardless of their actual BMI) who “lack self-control” and are “lazy” and therefore undeserving of sympathy.

Yeah. I know which one I think of as being “the bad one”…

Shortly after I was diagnosed with Type 1 in 1974 and as a 17 year old, an adult acquaintance of mine said he knew I would get diabetes, after all I was always lazy, ate candy and often ate pancakes. I wanted to slap him silly for his stupidity.

It was hurtful and well after 39 years it still hurts. Turns out there was an alternative motive behind his hurtful comments and yes it worked. the shocking thing is I know he believed ever word of what he said and it was terrible.

By the way I was 6'2" 175 and looked like a wooden post in the middle of a field. I do admit I love pancakes, always have, always will I suppose. But it had nothing to do with being DX'd with type 1. As I still mumble when I think of it (idiot)

rick

I do love your text! Totally feel it!

EVERY WORD YOU SAID IS SO GOOD & TRUE.
I CAN'T IMAGINE WHAT MY MOTHER WENT THROUGH 7 + YEARS AGO.
I AM NOW 80+ & STILL BREATHING.
HUGS TO YOU & ERIC.

PS. 77 + YEARS AGO.

I don't have empirical data to prove it, but I'm utterly convinced that the "poorer" outcomes in T2 are frequently due to the medical establishment's view of it as less "serious" and therefore less needful of focused and aggressive management.

And then, of course, there's the monumental scandal of misdiagnosis, which is endemic . . . and life threatening. If you are really T1 but receive treatment designed for T2s, that IMHOP is very very close to malpractice. In fact, I'll wager a case could be made that some percentage of bad T1 outcomes are directly traceable to their having received the wrong treatment in the beginning.

But that's really a side issue. T2 is no joke. No form of diabetes is. Thanks for posting this!

- David

I also did not look up the data, but I think there are some things that are problematic in the information presented. Let me first agree with you on one item:

1. No diabetes is good, I agree with you on that point and I think most members of the site will also agree.
Thank you for stating that.

Now our potential disagreements:

When you cross compare Diabetic outcomes you are potentially opening a tremendous gap in the statistical evidence. This is the principal statement that I find so concerning:

“Despite a statistically shorter duration of diabetes and similar glycemic exposure, macrovascular complications were much more common in the type 2 diabetes cohort (ischemic heart disease and stroke), but there was no difference in retinopathy or renal function. Death was also more common among patients with type 2 diabetes, and it occurred after shorter disease duration”.

Now here is why I find it so concerning that I would write this response. I believe if one dug out the statistics, we would find that average age of type 2's is very much older than the average age of type 1's at onset.

I also believe that if one were to look at the numbers it could be found that deaths as a result of heat issues occur with far more regularity the older a person (any person is). I imagine for instance the incidence of death due to heart disease in the broader population is greater for people age 65 than for people age 20. Given that fact (I hope we agree) it makes sense that type 2 diabetes, with have an average age greater than type 1's would have more heart disease and strokes.

I further would have to state that again with a greater average age it is far more likely that "Death was also more common among patients with type 2 diabetes, and it occurred after shorter disease duration". No offense here but if the average age is greater for type 2’s, then of course death is more common among type 2's. Further there are far more type 1's than 2's. Since that is correct, of course they have more deaths.

Ok, I will now get off the issues. Here is my main point, the statistics here are not referenced and further, I believe there is are inappropriate statements being made which are typical in understanindg association and causation.

Comparing types of disease is a very tricky business, disease populations are drastically different and unless causation is demonstrated statistically then nothing is demonstrated.

I am a type 1, and have been for 39 years. Yes I do believe I have lived a charmed life, but let’s not cast any sort of issue between populations, without the statistical evidence. We do not have the ability to decide if the Diabetes is the cause of any of these reported results. It is unfair to say causation (the type of diabetes), is any sort of factor good or bad in these outcomes.

Now I do not mean to upset the writer or anyone else over my statements. But tossing statistics around in the discussion and associating them with fact is dangerous, both for type 1's and type 2's.

I love 98% of the post, and agree with it completely. I just can’t sit and see association and causation used in this manner without scientific evidence of causation.

Here is a further point. My grandmother was type 2. She died at age 79 and was diagnosed at age 66. She lived a mere 13 years following diagnosis. Grandma had heart disease long before her diagnosis as a type 2 diabetic, and long before she was treated. Grandma fits the profile offered in these statistics. She died soon after diagnosis she lived a much shorter life than me. It is inappropriate however to judge her outcome against my 39 (thus far of life) 56 year olds die less often from heart disease and stroke than 79 year olds. No offense here, but the analogy does not stand up.

rick

"There are three kinds of lies: lies, damned lies, and statistics."

- Disraeli

David: This is not a lie; it is more a misuse of statistics to come to a very wrong conclusion. Elizabeth did a very nice job on the post and frankly if this interpretation is used to assist her, I have no problem with it. It is when this interpretation is published here and not well sourced and I believe a misuse of the data, that I had to point out the flaw.

I pointed out this issue in a blog a few weeks ago titled:

Causation or Association

http://www.tudiabetes.org/profiles/blogs/causation-or-association

It is a simple mistake people often make and well I should have pointed it out sooner. It obviously troubled me. I believe in writing this post Elizabeth made an easy to make mistake of logic as most people do when they use statistics. The actual mistake is comparing disease population without first looking for the nature of the significance of the relationships between the two populations.

It does not make it a lie, just a common mistake.

rick

Rick,


I was trying to make a point with levity (as was Disraeli), not start an adversarial debate. To put it another way, I was pulling your leg and it came off in my hand.

Nevertheless Disraeli's point is instructive. By manipulating or simply ignoring the context of a set of statistics (or how they were gathered), one can prove pretty much anything. Manipulating data to force a conclusion without regard to its veracity is a clever way of telling a lie. That is true regardless whether the data is statistics or something else.

The difference between a lie and a mistake lies in intent. If it's deliberate, it's lying. If it's a mistake or honest misunderstanding, it's not. Obviously the OP didn't set out to deceive, so you're right, it's a well intentioned misreading of the data.

My point is a much broader one -- that regardless of the writer's intent, statistical "proof" of anything needs to be subjected to hard analysis and taken with many, many grains of salt.

And, in a nutshell, David... that is exactly why I consider T2 to be "worse" than T1. You're exactly right. Not only is society's attitude toward it ■■■■■■ — there's no other word for it, really — but even many medical professionals are less than humane when it comes to helping their patients with T2. I have gone twice now to University of New England's Friday seminars — a weekly event where med students talk to patients to get the patient experience. The seminars I've been invited to are addressing living with diabetes and its complications. The other two invitees in the two sessions I've been to are T1s, and I'm there representing parents of child T1s. Why are there no T2s? I often wonder. Is it because the organizers think T1 is "more complex" or "more difficult" to live with and therefore don't bother seeking out a T2? If I am privileged to go again this year, I will point that discrepancy out. Because from where I sit, T1 seems infinitely the easier of the two to manage.

I will, of course, see what my son thinks of that belief when he's old enough for self-care.

PS Rick, I get it that the stats aren't necessarily accurate. Lots of variables not accounted for, and I did try to speak to that when I mentioned that the article didn't discuss a1c. But I tend to think that the difference is probably real, and it's inherent in the less-rigorous teaching (IMHO) that T2s get about what their disease really means. Do you know, a friend of mine (woman in her 60s) was diagnosed with T2 recently and no one even told her that insulin has a 28-day shelf life? She was injecting herself from a vial she'd had open for over six weeks and couldn't figure out why it suddenly stopped working. It wasn't till she mentioned to me that she'd "done okay for a month" and then couldn't seem to keep her sugars down after meals that she learned this, because my first question was, "How long has your vial been open?" I took her straight to the pharmacy after that.

Elizabeth, your point is both genuine and very correct. I really was conflicted about writing my second post. I did not want to blow a little thing up to make it a bigger thing, when I agreed with your overall message.

What tugged at me (I waited until your post rolled off the front page) was my training. I suppose at some level training comes into play and it is difficult to ignore. You should not feel badly, I saw a doctoral student being torn to pieces over a similar issue she had attempted to use in her dissertation. It was a lesson I thus learned well. I wanted so badly to let it go, I just could not do it. It was like a ping in my head, I just oculd not ignore.

I feel that while your conclusions about the statistics were incorrect, it really was a no harm no foul. If this gives you comfort, then I have not objection. I had little comfort when dx'd at 17 and that led to destructive behavior. On the other hand I did not ant another 17 year old to read those conclusions (drawn inappropriately i felt) and make a decision that type 1 was not as important or deadly as type 2 and there fore make wrong choices in the same manner I made awful decisions.

I wish you and your son the very best. He looks (form his picture) and form your writing to be an amazing son. As the dad of two sons whom I love dearly I know how amazing sons are are at his age. I often say if I oculd turn back the clock it would be to the time they were between 8 and 12 and I would never leave that time. Those are the most special times in a young man's life and the time we (they and I ) were most connected, and it is the reason today I love them as much as they now love their sons and the amazing daughter who when born had 3 generations of Phillips men wrapped around her little finger. :)

Ah, good point about the 17-year-old. But I was writing from the perspective of a parent — it was about the emotions I have in hearing people compare two equally awful diseases as though it's a freaking contest, and in my opinion (which is far from scientific) coming to the wrong conclusion.

That study, and the concept that T1 is 'better' than T2 in terms of outcome, is like saying "Apples are better than oranges." Well, in what context? If you are someone trying to grow fruit in New England, then yes, I can see thinking apples are superior fruit — they fit the climate better. But if you're trying to assess nutritional benefit, um...

"Worse" and "better" are subjective concepts, and that is one reason the title of that study hit me the wrong way. I can't really speak to its methods or findings, because I don't have access to the data and I don't know what "fruits" the researchers were comparing to one another.

My blog is, after all, a reflection of my opinions and should in no way be confused with reality :)

Too true about the lack of education, Elizabeth. I was at one of the local support group's monthly meetings when the speaker mentioned glucose tablets. Someone immediately raised their hand and asked, "what are glucose tablets??"

True story. I rest my case (our case).

Oh, and another thing. This whole "which is worse" thing pushes my buttons in a MAJOR way. You don't typically hear breast and colorectal cancer patients arguing about which is "worse." The American Cancer Society speaks with a single voice and until the diabetes community learns to make peace and do the same, we will never be heard nor listened to properly.

I DON'T CARE which is worse. I want us ALL to be heard and to get the support we deserve.

I have ranted at length on this subject elsewhere. I won't repeat it here.

*facepalm*

Did you see my other post about Things That Make Me Scream?

Yeah, I commented on it back when you first posted it. :)

Awesome blog!!