New nastygram to the New York Times

In response to this “Opinionator” article in the NYT: http://opinionator.blogs.nytimes.com/2011/04/12/how-to-save-a-trillion-dollars, and specifically its opening paragraphs:



"For the first time in history, lifestyle diseases like diabetes, heart disease, some cancers and others kill more people than communicable ones. Treating these diseases — and futile attempts to “cure” them — costs a fortune, more than one-seventh of our GDP."



The noise you hear in the background is me beating my head against my desk. While I agree with everything you say about prevention – I’m an ardent proponent of the “food is medicine” movement that espouses a greener, more organic diet – why, why, WHY must you lead with diabetes as your example of a lifestyle disease? For a great many people with diabetes, it is anything BUT a lifestyle disease. My 4-year-old son has Type 1 diabetes, and was diagnosed at 18 months before he was even weaned. Are you going to tell HIM (when he’s old enough to understand) that he caused his illness by eating too much sugar and not exercising enough? Because when you fail to differentiate between metabolic diabetes and autoimmune diabetes, that’s exactly what you’re doing – pointing fingers at someone who is blameless, and worse, strengthening the bias in the public mind that has been created by such know-nothing rags as Reader’s Digest with its “Reverse Diabetes!” headline. Do you have any idea how many times I’ve had to explain to well-meaning but ignorant parents that, contrary to their assumptions, my son isn’t on insulin for the rest of his life because I f***d up his diet by giving him sugar in infancy? Do you have any idea how many people with Type 2 diabetes go through life doing everything “right” but still facing prejudice because they “did themselves in with food”–even if they didn’t? There are plenty of Type 2 diabetics out there who eat well and exercise, but still have diabetes… because it’s part of their genetic heritage. So when you call it a lifestyle disease, you’re putting a lot of weight on one factor in a multi-factorial situation.



Karen Parles, a long-time lung cancer advocate and the late founder of lungcanceronline.org, told me when I first met her how it felt to be a lifelong non-smoker with lung cancer. She was treated like a pariah, to put it politely. No one believed her when she said she’d never smoked a cigarette in her life, and had only ever lived with nonsmokers. Emphysema, lung cancer, those are the ultimate “lifestyle” diseases because there’s a direct link between smoking and disease… but does that mean we have to treat the sufferers with less than usual compassion because “they did it to themselves”? Particularly given that many of them did not!

Unfortunately, this was an “opinion” piece. Mark Bittman was a good writer of cookbooks, but he has become a raving vegetarian whack job. I think he really may just be an animal rights activist playing a part.

Proponents of one diet or another tend to have their minds made up. In spite of the fact that there are conflicting studies, and experiences and food preferences. He did say Type 2 diabetes in the article if not in the opening statement. I know obese Type 2’s who eat more healthfully than I do, and exercise more – why are they fat and I’m not? Obesity is so complex, and the word “lifestyle” has become a meaningless buzzword. It’s just too bad that so many people buy into the myth.

I appreciate your compassion for all people – wish there were more people like you!

Yeah, I know. But I figure, if I don’t say anything, chances are good he’ll go on believing he’s 100% right. Which he may do anyway… but if he has any journalistic integrity, next time he starts ranting about lifestyle disease, he’ll at least think twice. (And that’s exactly why I put in the note about lung cancer – if anyone has it worse that PWD over the “you dunnit” problem, it’s those people!)

The reality is and always will be; if they don’t have the disease (or they are not directly related to someone who does) they will not give a s**t…and why should they? This is our issue and we need to deal with it like adults and quit crying about how bad it is. We could have it a lot worse, or a lot better, but the truth is: it’s here, do the best you can and move on with life, if you dwell on it or make it the center of your life then you will have nothing else.

Oh, Sandpirate, I would agree with you if not for the fact that diabetes is EVERYWHERE, and it’s only getting worse… nor is it just a medical issue. I think my endocrinologist was the one who told me that one in every seven healthcare dollars goes to diabetes – so this is not just “our problem”, it’s a national and global economic problem. Those who fail to understand the disease also fail to understand that the solution isn’t as simple as they’d like it to be. They point the finger at people with T2 and proclaim them “lazy” or “gluttonous”, and while that may be true of some (just as it’s true of plenty of people without T2!), it is definitely not true of most. But with that perception being touted by the media (including this particular article), it becomes and excuse to deny resources toward supporting those who have or who are in danger of developing the disease, at the same time that an AWFUL lot of resources are being shunted toward supporting the pharmaceutical industry that profits from it. So… I take exception to your statement that bringing attention to the misstatements and misperceptions in the media is “crying” – more like setting the record straight, and educating. I’m not going to stand still and let my child be discriminated against because of the ignorance of the masses. Maybe that’s quixotic, but I see it as my job.

T1 is genetic, my cousin had it; he lost an arm, a leg, his vision, and ultimately his life…yet there are still family members that were close to him that could not tell you if he was T1 or T2. Forcing others to accept or fully understand something we believe is important is futile (especially when presented in attack mode).

We are all here to help others and ourselves, but by splitting hairs we don’t even help ourselves.

As I understand the genetics of it, the predisposition is not so much for T1 as it is for generic autoimmunity – in my family, that has typically expressed itself as rheumatoid arthritis. I’m the first person in my maternal line to have autoimmune hypothyroidism instead. Eric is the first person on either side to have T1D. And T2 has a much stronger genetic predisposition than T1. Note the following from the ADA’s web page on the genetics of diabetes:

"Type 1 and type 2 diabetes have different causes. Yet two factors are important in both. First, you must inherit a predisposition to the disease. Second, something in your environment must trigger diabetes.

Genes alone are not enough. One proof of this is identical twins. Identical twins have identical genes. Yet when one twin has type 1 diabetes, the other gets the disease at most only half the time. When one twin has type 2 diabetes, the other’s risk is at most 3 in 4."

…and as for “attack mode” – if a writer claiming to be an “expert” makes an erroneous statement in a publication, that person needs to be corrected. And most people who write for a living in the scientific or health sphere are aware of that, although some take correction/criticism better than others. A critique is not an attack – an attack comes only when you make personal statements about the writer’s integrity or personal characteristics, and that isn’t what I did. Nothing I said is false or inflammatory – critical, yes, but I think my point is valid. And I do not agree that it is futile to continually try to educate the mass of people who do not understand a disease that’s all around them. It may not be easy and you may have to do it a zillion times, but my encounters with people here, there, and everywhere have shown that you CAN educate the ignorant if you’re willing to do so with a good attitude.

Elizabeth,
It is so ridiculous that you and your son need to hear any of these remarks. I can’t believe that mothers are now being blamed for their children’s diabetes. Hopefully, this will all change before your son is old enough to be aware of this nonsense. Once upon a time, the mothers of autistic children were blamed for the condition of their kids. That has changed now. Why we are going backwards in our thinking is a mystery.

Peetie, I think a lot of it has to do with media presentation, which is one reason I make a point of responding when I see this stuff in the popular media. When Dr. Oz goes on his show telling people they can “fix” their diabetes with dietary and exercise changes (not really clarifying that he’s talking about T2), and then shows a poorly controlled T1 who’s had multiple amputations as an example of what happens if you ignore your diabetes… well, do I really need to spell it out? People actually LISTEN to “experts” like Dr. Oz (who is a THORACIC SURGEON, dammit, and not an internist or an endocrinologist!) and they take home messages that simply don’t reflect reality. And then they feel obligated (or qualified, whichever) to comment on my son’s situation based on that “knowledge” – Miss Manners, I’m sure, falls to her fainting couch at the mere thought of such a thing, but people do it. I do try to be gentle when I set people straight – gentle and not emotional about it. Since I’m a writer by trade, communicating by spoken word isn’t my first choice, but I figure it’s good practice for my upcoming efforts as my son’s advocate in the public school system.

Elizabeth,
I’m a teacher and a relatively new diabetic (Type 2). I can’t tell you the number of times I’ve practised sticking oranges over the years. Every time a new child with diabetes arrives, a staff meeting is called and the parents and some members of the health care team present the child’s unique problems to all staff. Several staff members volunteer to receive further training and then become the “go to” people for the child. While there are fools in every profession, my experience has been that school staffers are very well trained in all Health and Safety issues. I hope this will be your experience.

It sure does my heart good to know that some schools do it right! I’m actually pretty hopeful about the school Eric will be going to. I know of at least 3 kids in the school system with Type 1 – one of them is in Eric’s older brother’s class. The school system consolidated all of its elementary schools into one building so they could have the school nurse on the premises at all times, which bodes well! But, he’s going to be in the school system for 13 years, we live in a small town in a rural state, and I can’t guarantee that all of the school’s personnel are going to be with the program. AND we’ve got a neanderthal running the state whose great goal in life is to cut all state services that help average people so he can offer tax breaks to wealthy business owners who don’t really need them. The local high school is suffering from a mass exodus of qualified teachers right now. My stepdaughter’s Spanish class is being taught by someone who doesn’t speak Spanish, if that tells you what’s happening in our district. From what she’s told me, I am better qualified to teach that class than the person who is being paid to do it (I had 4 years in high school and a semester in Mexico, and I’ve spent a fair amount of time watching Dora and Diego lately.) So… there is no guarantee that the good people who’ve been learning about diabetes from the kids who’ve preceded my son will still be there when he starts school in 2 years. I’m going to hope for the best, but plan for the worst.

As it happens, the worst trouble I run into usually takes place in shopping malls and movie theaters. I have had the following exchange at our local theater: “Ma’am, you can’t bring that bag into the theater.” “Sir, I have to bring it – my son has diabetes and his supplies are in it.” “Ma’am, please don’t try to tell me stories. There’s a juice box in that outside pocket, and I know diabetics can’t drink juice.” (facepalm followed by a brief attempt to explain, followed by a short conference with the manager, who wasn’t very interested until I mentioned the Americans with Disabilities Act. Since then, I’ve had no issues bringing Eric’s diabetes kit into the theater.)

Hi Elizabeth,
How are you doing? Did you get Eric registered for kindergarten? Are you pleased with the response?

Oh, Eric isn’t going to kindergarten this fall–he has another year of preschool. He doesn’t turn 5 till next April. So it’s going to be a while before I have to gear up for that. Doesn’t stop me thinking ahead though!