Incorrect Messaging about T1—Are We Partly to Blame??—a Two Edged Sword!

swordThe faces of kids are in Washington DC testifying before congressional meetings about diabetes.

The faces of kids appear in ads about diabetes and how important it is to find a cure.

The faces of kids with diabetes are bought to the front of the crowd at galas, walks, rides and other events.

Their faces are smiling, they wave sometimes, and they are shown laughing and being as normal as normal can be.

At the same time we, as a community, scream when people do not ‘get diabetes correctly’ in the media, in our schools, and even when we hear it from our relatives.  So much is ‘gotten wrong’,

So is it our own fault that the messages are mixed?

We strive to get our kids back in the mainstream; on the soccer field, on the hockey rink, on the baseball field, and back out to play.  We hold up a strong front that everything will be okay; as if we are really protecting them from something they probably have already found out from the internet, speaking to others, or hearing ‘it’ in the world around them.

It is a two-edged sword. 

In as much as we scream that no one understands about this disease unless it is lived day-by-day; we also keep it ‘in check’ by keeping it to ourselves by trying to be as normal as possible and ‘protecting’ our kids.

Gina is a mom to a child diagnosed at 15 months and she aptly states;  I have often thought that many in the T1 community try to put such a brave face on to the public that we lose many opportunities to relay the grueling work behind trying to stay healthy for T1s.

I think of ads like those from the Smile Train showing completely disfigured faces of children who desperately need their plates to be surgically corrected.  There is NO QUESTION what is needed.  Perhaps we stare, perhaps we look away, but there is no doubt we know the problem.

Want to talk reality, look at the anti-smoking ads that are popping up all over the country showing how much cancer has impacted patients with about as graphic shock value that you will ever see on television.

I do not have an answer here and it is a question that has perplexed me for years.  I have talked about one of the best commercials ‘never aired’ by the JDRF.  The commercial opened up with a stone engraver pounding away with the voice of Mary Tyler Moore speaking how one day they need to make ‘this’ a reality.  The camera ‘pulls back’ and it is the word DIABETES on a tomb stone and Ms. Moore’s voice over says; “A death to diabetes”.

Well my-oh-my how the parents screamed and stamped their feet about the commercial and it was not released.  “Kids will think they could die.”  Yeah…….well.  So they went back to ads of beautiful faces; and looking as if nothing was/is wrong.  JDRF took a bold step to make a point, we as parents, stopped it.

So it is surely a two-edged sword……but here is the question, and I am not saying we have to get completely graphic about this; if we say that we want the world to do a better job understanding this disease and yet we are not bold enough to tell them the truth about it because we ‘want to protect our children (who probably know much more than we think)’, how does one ever expect to get the message across?  We have to be bolder in our approach, newer in our messaging, and not afraid.

If we do not say it, how will people know; we must find that balance.

Food for thought……..yes? 

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

16 replies on “Incorrect Messaging about T1—Are We Partly to Blame??—a Two Edged Sword!”

Here in metro NY they are running TV ads about how sugared drinks cause diabetes and they are pretty graphic too. that’s disturbing as a mom and daughter of T1’s. There is need for more awareness definitely.

I have been realistic about my son’s condition and how it affects him and those around him. He is not an athletic diabetic. He is not a happy-go-lucky diabetic.
He is not surrounded by handfuls of understanding friends. So I do find it confusing that so many type 1 diabetics are depicted as perfectly happy, perfectly healthy, perfectly social adept young children or older success stories. It almost seems from the eyes of an unknowing public that these depicted diabetics are merely inconvenienced by having to prick their finger and take shots. That is where most ads end. Sometimes a few symptoms get thrown in for good measure. Rarely if ever are the complications shown and the gravity of them. Almost never is the emotional side of Type 1 Diabetes shown or even lifted up from the taboo placed upon it by well-meaning parents and clueless professionals in ads -or- in the company of others who might understand. Where is someone going through this supposed to turn if they cannot turn to others with Type 1? It is not something that will go away as long as we don’t talk about it and act “as if”.
That being said, showing death beds, gravestones, etc. will have an opposite effect on the public if that is all that is shown. People will look away like they do for the starving children commercials. Too light of an ad, the reaction is, “So what?” Too heavy, and Type 1’s are de-personalized like the people killed in video games into non-existence.
The diversity of people with Type 1 could be represented in all stages healthy through complicated. People we meet while advocating and spreading awareness will often say, (if they are honest) that they would rather donate to Cancer and Alzheimer charities than to help cure Type 1 because they do not think that Type 1 Diabetics die from their disease. Whatever model is being used by those charities could serve as a starting point. Relay for Life says it in a mouthful. Lives are at stake, so people donate. Cure Diabetes is too vague. In general, Diabetes is viewed as a deserved curse on people who do not take care of their health. As nauseating as that is, it shows that again the cause of Type 1 is also under-represented in the media. Perhaps writing letters to Congress is just one step and writing letters to the editor about the causes/symptoms/complications could be step 2? I would love to work on ideas with people. As always Tom, Count me IN!

I agree. We’re only 3 months in, but I find myself defending my daughter’s diagnosis to other people. Specifically other people who are her age (9/10 yr olds). As a parent I spend so much time trying to “normalize” diabetes to those around us by saying “She can eat what she wants, she just has to take insulin for it.” Or “She can play sports/ride her bike/play hard, she just has to check her blood sugar more often and eat snacks.” Which, physically, yes, is true. But it does negate the emotional impact of all of this. My particular child ISN’T doing well on shots. She hates them, so she sneaks food to avoid getting a shot. Which of course, results in high blood sugars. And if she’s not hungry at snack time, we run the risk of low blood sugars. “Normal” kids aren’t forced to eat something when they’re not hungry and told “If you don’t eat, you could end up in a coma.” Type 1 is so much more than a just a few finger pokes and a few shots.

Yes, we should strive to make our kids feel like diabetes won’t stop them from doing whatever they want, or eating whatever they want, but in reality, it does make doing those things HARDER. And as a parent it makes it harder. I could see a commercial of smiling type 1 kids, and in the background a bunch of tired, messy haired, sweat pants wearing type 1 PARENTS carrying tote bags full of snack, testing supplies, insulin, syringes (or extra infusion sets, etc) yelling about “Did you check your sugar?” “Did you eat all the carbs we bolused you for?” LOL. That’s what type 1 looks like around here.

I think people find it crazy when I tell them that i do not get sleep because of diabetes. I check at 11:00PM and 2:00AM everyday (except when I am so tired that I do not remember hearing the alarm). They do not get the fear that I have that my son may not be breathing in the morning or the relief that I have when I see his chest moving in the morning, or when I touch him and he is still warm.

It makes me feel paranoid and that maybe I am going overboard until I check him at 2:00am and find him at a 54 even though he had the same snack as the night before with little difference in physical activity.

I am a diabetes dad too!!

Very good – thought provoking. It is true… these ads won’t get the public’s interest in donating. Step outside Type 1, think back to before you or your loved one was diagnosed. Now review the typical Type 1 Fundraising ad/images in your mind Now imagine other diseases/causes and their ads… where would your money go? Now that you’re familiar with Type 1, you know all too well what’s involved in the day to day efforts, how serious this disease is, and how badly we need a cure. For the most part, the general public still does not realize this. Perhaps it is time to push for more realistic ads.

If you are asking how to get society as a whole to better understand Type 1, I think you are asking the wrong question. First we must ask if we need to spend our energies on it?

Let me explain why I ask that. Do you understand what those with cancer, arthritis, brain injury, down syndrome, etc. go through? I don’t ask that to be argumentative or facetious. I am asking because we cannot know without walking a path. I am the mother of a son with type 1 diabetes, a daughter with juvenile arthritis, a son with a rare brain disease, and a daughter with extreme allergies and asthma. I can tell you that NOBODY understands any of those things unless they live with it. My daughter with arthritis “looks good” so is expected to be able to be as physical as everybody else, or she is considered lazy and attention-seeking. My son with the brain disease has visible scars from surgeries, but is a very sharp young man so people get impatient with his limitations and see him as lazy or not paying attention. And can’t my daughter with allergies and asthma just take some medicine and use her inhaler—and not embarrass them by taking safety measures in restaurants? We are all too familiar with the issues facing my son with diabetes…

I think the problem is an overall lack of empathy in society. We all feel like our struggles and burdens are harder than others’ so we don’t extend empathy to people. We aren’t considerate and patient when we are interacting with each other. We make people “prove” that they “deserve” to have grace extended. I work hard at not imposing my own family’s struggles on others because, frankly, I would never be nice to another mother sharing how tired she is from being up two nights with a teething toddler! Life is hard for EVERYBODY! None of us has the brain capacity to understand the individual struggles of each of those around us. We don’t have to. We are intimately aware of what it is to struggle—no matter what source of the struggle. When we can show honest compassion to those who seem to have a “cakewalk” life, we become what we want from others.

Lynn, your words really moved me. Thank you for sharing.

I think an analysis of the source of revenue for JDRF or DRI (or the majority of disease or condition related charities), would show funds are driven by events (walks etc) and donations from people or corporations with an existing connection.
The role of advertising is primarily to raise awareness, and if possible create an emotional connection, not drive donations directly.

I am asking the right question for that is the question I chose to ask; and I knew very well what I was asking. I was not asking if we need to spend our energy on it and if you want to bring it up, I certainly welcome your input and opinion, but I am not asking to put one’s self into understanding another’s state of disease, disability, or challenge (or stating the lack of people doing that). That is not the article at all

My answer to you is also not to be argumentative or facetious. You took my question to another pathway, which is fine, but not what I asked.

Read my article again…it is very clear on its intent and it is nowhere down the roadway you are going. You make a good point and a good discussion; but it is not today’s article. Email me privately so I can grasp more of what you are writing which I do think makes sense—it is just a different topic for another day, which I will gladly discuss in another article.

Thanks for writing.

Okay, I have always been realistic about my child and felt jealous because mine seems to be the only one who gets knocked down so hard with catching every illness out there twice as hard as other kids. I post pictures of her getting iv’s in the ER. The long days that usually follow at least once or twice a year. I have had people tell me how can you let her do this or that just a day or two later. Because if I don’t she will never get too. Her asthma was fine on its own but add diabetes and we are out a day maybe two for the respiratory infection, but the meds messes with her diabetes. So we take at least 3 days to get sugars in line enough to return twos or three days later then her vocal chord dysfunction will flare up and I send her back to school with no voice for a week during which, she comes home and sleeps. She is now 10 days behind in honors and AP courses. People don’t get that she is sleep deprived I am sleep deprived because even the good times come with long nights because something she dreams about or an activity from the day is causing a stubborn low at 2AM or she has a high and has started vomiting. But she still needs to get up for school. Oh, then add that the school does not send home work with the hospital home bound teacher till she returns! Like she can do the last two weeks worth of work in the next week. When will she be a kid. Oh, according to them when she is caught up. Yeah, right because 4 weeks later there is a stomach bug going around that she will surely get because AP/honors kids come to school sick if they can sit. She can’t do after school sports or clubs because she is too tired from her last illness and at her school if you miss practice because of dr appointments or illness even once your cut. Granted we could fight this but it is a small town and the looks and frustration aren’t worth it for us. But she still manages to smile and still manages to find some to have normal days.

I our home, T1 diabetes is “normal”. 3 of our 5 family members have hyperglycemia. 2 of them are on insulin. I hate that my husband and kids have to deal with the pokes, the highs, the lows, but I also tell them every single day that I will do everything in my power to make sure they can live whatever life they want. And we try and celebrate the little “wins”. This morning, all 3 of them were in perfectly normal range: 79, 81, 105. For one fleeting moment, diabetes got its butt kicked. But, by golly, I’ll take it! 🙂 The only people that drive me crazy anymore are the nuts that tell me if my kid only ate cinnamon, they would be CURED. Cinnamon tastes great, but unfortunately, it won’t change the fact that my kid’s pancreas NO LONGER MAKE INSULIN. I take that chance to explain to them the difference between T1 and T2 diabetes, blow their mind, and move on knowing that one less person in the world is completely clueless. Like I said, it’s the little wins… 🙂

More people need to post a video of their day in a life with… I saw one of a mom with two type 1 children. When I showed it to people they seemed to get it better. I also like the video of British mothers of type 1 giving there story.

Congratulations for sweeping the reality of T1 diabetes out from under the rug. No one is going to understand the reality when all they see is active, smiling children, and mountain climbers, and marathon athletes, and Dr. Nat Strand (but not her partner who saved her life a couple of times), and never a portrayal of someone having a low (I remember people being incensed by Steel Magnolias, but that was a pretty good portrayal of a bad low), or someone who is blind or had an amputation or even the daily struggle of taking injections. I’m sure the kids DO know it, and if they don’t, they need to. How many teenagers go slack in their diabetes treatment, because the danger of it is totally unreal to them? I really do think T1 has been totally and completely misrepresented, due to the parents who do not want to face reality. Time to do an about-face!

People always ask me how my daughter is doing, and how I’m doing. I NEVER sugar-coat anything. I tell them the hard facts of life as a diabetic and a diabetic caregiver. Unfortunately, then they stop asking because they’re always expecting something like, “Oh, it’s all better and under control and she’s doing just fine” kind of answer, and that’s not at all the kind of answer I give them.

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