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Hereditary diabetes and other reasons I hate mainstream media.

March 17, 2009

I had the pleasure of catching the latest lame attempt at media coverage of diabetes this morning in the form of a Telegraph article on research being done at Baylor College of Medicine in Texas.

angry-faceOK, I get that type 1 diabetes has a genetic component, but does that need to be called out as hereditary? ONE other person in my family had type 1 diabetes (my grandfather, who actually had LADA before they knew what that was) and a couple others have type 2. Of all the descriptions you could use to describe diabetes, why on earth would you pick hereditary? This journalist didn’t even mention the phrase “type 1,” failing to distinguish it from type 2 diabetes because BOTH are, in theory, hereditary – which means passing, or capable of passing, from parent to offspring. Not necessarily that it will happen, just that it can. And why leave it up to chance that someone will actually look up hereditary on dictionary.com (like I just did) to figure out that hereditary doesn’t mean 100% genetic between parent and child?

Second: what’s with the word “sufferer”? OK, I understand that managing diabetes is not pleasant and occasionally when I have a high or low blood sugar I can be pretty cranky and miserable. But I am a happy, cheerful twentysomething who is absolutely thrilled with her life. Have you read my blog? Do I sound like I’m suffering to you? Maybe some people out there are – and I truly sympathize with you if you are – but why paint such a negative picture of the person?

And special diet? Please, pray tell, what “special diet” am I supposed to be on, exactly? Let’s see, I eat popcorn, muffins, oranges, BBQ chicken, corn on the cob, ice cream and chocolate chip pancakes. And I’m not dead yet. Yes, I have to make sure I count my carbs and Cheerios wreaks havoc on my morning post-prandials, but I hardly call give up cereal a “special diet.”

Listen, I understand that diabetes is complicated – that’s why we need a cure – but there are certain things that I do not need overdramatized for the sake of selling newspapers or even raising dollars. I do not remember the last time I read a newspaper or magazine article or heard diabetes talked about on TV where the information presented was 100% accurate. Almost every mention of diabetes has been fraught with at least something that wasn’t right. Please do not misrepresent my life. I still have to live it, and I’ll have to live it with an uneducated society who thinks I was born a diabetic, can’t eat carbohydrates and that I have it “real bad” because I wear an insulin pump.

12 Comments
  1. March 17, 2009 2:39 PM

    I hate the word “sufferer” too. Not cool and very unnecessary. It’s true they never, and I mean NEVER seem to get all their info straight. It is complicated, but if they’re going to write about it, as with any journalistic endeavor, they need to make sure they have their facts straight before they go publishing out-dated or flat out wrong information. Complicated isn’t an excuse for getting a few or even one random detail wrong.

    • March 17, 2009 4:12 PM

      I agree! Newspapers often revise if there are inaccuracies, but I’ve never seen anyone do it for diabetes. Maybe no one has asked? Very frustrating in any event.

  2. March 17, 2009 2:52 PM

    I hear ya – I really do…

    I also don’t think it’s limited to just diabetes. I know with the OctoMom thing, a lot of mommybloggers were upset about the media’s use of the words implanted vs. transfer. Since they know about the difference between the two – they care. Since we know about all the medical details about diabetes – we care.

    Having only come into this world relatively recently, I know about some of the stereotypes my family and I had before. I wonder if it is expecting too much to ask for perfect reporting if they don’t have any prior knowledge about diabetes.

    That being said – I wrote in the comments of a website that referred to the Last Comic Standing winner with CP as someone who ‘suffered’ with CP and mentioned that he probably didn’t view himself as ‘suffering’. A few hours later when I went back to check on my comment, and they had removed the wording. Small victories!!

    • March 17, 2009 4:10 PM

      That’s so cool that they changed the wording! ::high five::

  3. March 17, 2009 3:10 PM

    I heartily agree with your point, and there is a really important issue here, about the false view that there is such a thing as a ‘hereditary’ problem in almost all cases of any type of major ill health (not all – but ALMOST all). Our genetic heritage MAY include markers/potential ‘switches’ that could be triggered and eventuate to disease BUT only if a combination of lifestyle and emotional influences causes this to occur. (One must needs add in the possibility of currently still widely accepted practices such vaccination causing masive traumatic toxic stress to the immune system and other issues to do with ‘viral infection’ knock-on effects – infections that may yet transpire also to have been occasioned by vaccination it might be suggested – in some/many cases of type 1 childhood diabetes..but be that as it may)…
    In our own general effort to present useful health information, and publish in various places on the ‘Net, I am truly interested to know if the ‘typical’ diabetes ‘sufferers’, of which there are now so amny and increasing, all know about/have tried/have found not to work/or simply dismiss concepts such as alkaizing (eating to increase blood alkalinity) and the associated/related theory/practice deriving from the alternative school of thought about ‘raw food’ diet which we understand has achieved dramatic results (amounting to effective cure) for numerous diabetics who have gone this route – type 2 AND type 1.
    In research it seems as if these approaches are not always talked about in typical ‘modern medicinal’ circles and even pooh-poohed as quackery by some lamentably ill-informed/under-informed medical practitioners…But it would be great to hear any feedback from those who have been diagnosed as diabetic and esecially if serious enough to be ‘insulin dependent’ – as to whether they are acquainted with and or have actually tried – or dare not risk – innovative dietary approaches such as these? (or simply are not prepared to ‘compromise’ or ‘give up’ their current dietary habits to venture to try these approaches – preferring to stick to insulin therapy and the hopes of possible pharmaceutical solutions to come some time in the future – perhaps?)
    Thanks for the opportunity to air this question – and any subsequent answer.

  4. Arielle permalink
    March 17, 2009 4:06 PM

    Actually, my favorite wording was about how diabetics (sufferers!) are FORCED to inject themselves with insulin every day. I don’t know about anyone else, but no one ever held a gun to my head and forced me to inject myself. I think most people are pretty darn happy to be able to inject themselves (or pump, or whatever) when you consider that the alternative is, you know, death. (And I have two Magnolia bakery cupcakes sitting in my fridge right now waiting to be eaten–I wonder which part of the special diet those fall under?)

    • March 17, 2009 4:10 PM

      Megrachel on Twitter said the exactly same thing about the “forced” wording. I mean, I get that it’s not exactly *voluntary* but you’re right – I don’t see any guns around here! People who say, “I don’t know how you do it…” drive me NUTS!

  5. March 17, 2009 8:43 PM

    Allison, I’ve nominated you for an Honest Scrap award. Please see my blog for details! I love reading your blog. I learn a lot, laugh, cry, and nod my head in agreement.

  6. Norman Savage permalink
    March 18, 2009 8:00 AM

    Hello Allison,
    I read your piece this morning with much interest, identification, and some amusement. When I got diabetes–almost 51 years ago, and counting–there was no hereditary component in my case. In my research for my memoir, JUNK SICK: CONFESSIONS OF AN UNCONTROLLED DIABETIC, I came across this: Dr. Angel Garma, a Spanish physician, began piecing together a suggestion that some disorders of the “stomach” and other circulatory abnormalities, might by psychosomatically produced. There are many things that happen to us in this life that we know nothing of.
    Diabetes, as far as I can see, has gotten a bad rap through the years. There is a dearth of information about the emotional component of the disease published and, as far as I can see, even on websites dedicated to diabetes, even less discussions about how to “feels” to have this disease. Now, I don’t claim myself to be a sufferer of the disease; my problems began long before I got the illness at the age of eleven. Already the seeds of my own particular manias and demons had been nicely put in place. What I did try to do, and what I did, is write about all this stuff in an informative and “entertaining” way. The memoir was going to be published, finally, by a very prestigious house here in NYC until the bottom fell out of our economy. But even before that did, and even after two senior editors of that house had wanted to publish it, the “marketing/sales” department was hesitant. “Diabetes,” they said, “doesn’t sell, all that well.” And, so, not one that is easily dissuaded from doing “anything” decided to go another route.
    In the past month, I’ve been published, interviewed, and have gotten a few nice reviews. You can read about that on the links provided, or you can google my name, Norman Savage, for what I believe is a hell of a piece of writing. For that is what I am, before most things–not a diabetic, junkie, or human, (there are very few humans these days), but a writer.
    http://smashwords.com/books/view/715
    Interview : http://blog.smashwords.com

    http://www.teleread.org/

  7. Carolyn permalink
    March 19, 2009 2:00 AM

    No Type 1’s at all in our family lineage until my son was diagnosed. As a long-time family history researcher I was certain that there were no direct ancestors who were afflicted (is that a better word?) I sent out email to far flung cousins & others with remote genetic ties–no Type 1’s among them.

    It’s been my thought for some time that Type 1 Diabetes needs a name that includes the phrase “autoimmune.” I am an RN and can tell you that many Type 2’s have no idea that they are in fact Type 2–only that they have diatetes. Type 1’s, of course, always know. I suppose you all have encountered some in healthcare who are not well aware of the difference as well? (I’m aware of some . . . )

    Before there was Type 1 and Type 2, we’d use the acronyms “IDDM” and “NIDDM:” insulin-dependent diabetes mellitus and non-insulin dependent diabetes mellitus . . . Again, not specific enough to make a clear distinction.

  8. Royce permalink
    April 1, 2010 12:12 AM

    Totally agree with everything you said up there. The media is full of misinformation on diabetes it makes me sick “”ESPECIALLY TYPE 1″”.

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