Thursday, February 4, 2010

Not an Afterthought

We have Oprah's hour-long episode Thursday entitled "America's Silent Killer," which went to the "epidemic" of diabetes and everything that falls under that big umbrella. As expected, the show focused on Type 2. This shouldn't be a surprise. It's just disappointing that Oprah decided to not hit that point. That there's not only this widespread type, but one that isn't preventable, is a lifelong disease, and one where research is crucial in order to find a cure.

In this hour of television designed to Scare people, you've managed to expand to even more people ongoing misconceptions about Type 1 Diabetes, which is frequently treated as an afterthought because it's only affecting 10 percent of the population. (You know, only about 1.7-2.5 million people, many children).

Instead, your show focused only on the "preventable" and "reversible" type afflicting most of our population. But in doing that, there was a decision to use the incredibly sad story of Laureen, a Type 1 Diabetic facing amputations and kidney disease, as the Token Example of D-Complications and what could happen if you don't care for yourself. This was purely a scare tactic, and one that effectively helped blur the lines between the various types of diabetes. On one hand, you say there's a difference and list them without really getting into it. Yet then, you use her to try and reach the Type 2s. I find that incredibly irresponsible and disappointing.

However, with all the Faults and Failings and Criticisms about your show and how this Umbrella of Diabetes was portrayed, this episode directly touched on that lingering inner fear that I could someday face a similar fate no matter what I do. You hit this right on, a hammer to the nail that goes in completely on the first thrash. I cringed. Teared Up. Stressed. Started Questioning Everything in My Own D-Management. Her story hit me hard, because it's one that I and most Type 1s, struggle with emotionally every day. That we might someday face this fate.

For Laureen, the 44-year-old Type 1 who's had parts of her legs amputated and is on kidney dialysis, she had her first kidney transplant at age 34, and within seven years that one was also destroyed. Amputations of food and legs. Lesions. Ravaging her body. I found it difficult to watch this, regardless of how this woman came to be in this spot. No word on how long she's Lived with the D, when diagnosed, or what her A1C numbers have been historically. Her words: "Try to take care of yourself early. Because I didn't when I was young. This is what happens"

She said people don't take care of themselves because "they feel fine. It hasn't hit them."

Very true. Pain is the best motivator. I think about this in my own life, and how some foot pain has motivated me. I think about how I'm currently 31, not too far off from when Laureen's kidneys gave out.

(Side Rant: I said it above, but it very much bothers me that Laureen was held out as the "D-Complication" example, when in fact she was a Type 1 and the show was mostly focused on Type 2. Even later in the episode, Dr. Oz spoke of Laureen's amputation and that led directly to comments about "diabetics" eating and exercising better and stopping these crisises from happening. And that if they can reach 6 billion "pre-diabetics," then they can help prevent the Laureens of the world. It reinforced the blank look Oprah gave at one point, in trying to figure out the differences between Type 1 and 2 and just then moving on. I'm so very sorry to see that happen, and feel so incredibly bad about it, but this woman was exploited. This all blurs the line. Maybe not for those of us who know or should know, but for anyone watching and now thinking we can stop, prevent this. As a prominent talk show host and members of the medical community, they have the responsibility to offer more than just a disclaimer note that Types 1 and 2 are different - they have to make sure this message is clear, always. And WTF about the rest, like LADA and so on.... [sigh] Rant Ends Here.)

While I'm healthy now and in relatively good D-Control, that wasn't always the case. As a teenager, I've hit levels that no doctor or child or parent should EVER see. For a while, it hovered around 13. During the most rebellious times, it was upward of that. Once, my A1C was at 21.(Yes, you read that right.) That's when my pediatric endo looked me in the eyes, started at me without words, then said flat out that if I stayed there I'd be dead within five years. I wasn't yet 18.

It hit home. But that motivation didn't last forever, because 20-Somethings are "indestructable." College happened. Life happened. My numbers weren't great. They never went as high as that Scary Death Number again, but they weren't great. The pump helped. It lowered me to a 6.1. But, I have the beginning toe-tingling and periodic numbness in my feet. Eye Doc has found minimal retinopathy a couple times, but better tighter control has made it not visible anymore. I'm in relatively good condition now, and always striving to do better.

But what about my past? Have I crossed some invisible line, where my fate is now dictated because of poor decisions made during my Teens and 20s? Where is this supposed line??? Have I already doomed myself, destined myself to D-Complications and A Fate That No Person or Spouse should have to endure? If so, it's my fault completely. I regret that I didn't. Completely. Every Moment. Wonder how a Type 1 Diabetic's mental demons get going, well this is how. Thanks, Oprah and Dr. Oz.

Again, I understand this show focused on Type 2. It's the "worst" and is "silently" killing so many. And the message, even to Type 1s and others, is clear: You have ways to manage this effectively now. That's a good and powerful message, and one that should be made whenever possible. However, I believe that these Public Advocates have a responsibility to make clear what they're saying, even to those who may not catch an entire episode.

There must be a line that can't be crossed in putting out this message. Do it accurately. Responsibly. Like Kerri would. (Can't wait to read her comments about this show...). Don't cross the line of muddying up what the general public might think, just because you want to scare some of them into taking care of themselves. To me, all Oprah illustrated here was that Scare Tactics are at work addressing the very real issue of Growing Type 2 Diabetes. With this, Type 2s can now feel even more guilty for being at fault. Type 1s can feel slighted for not being more widely represented and lumped into the Big D-Pot, and those with LADA and other types can shrug because their disorders apparently don't exist. We should all be offended by even the smallest of mistakes and inaccuracies in the information - such as the definate genetic link Dr. Oz mentiond for Type 1s, how we're all born with it.

Maybe it was too much to expect Type 1 to play a larger part on this show. Maybe. That's disappointing, and maybe if there was some Diabetic Online Community Bureau we could make a strong case for a Second Part to this, one that focuses on A Cure and The Need For It. Many of us in the Diabetes Online Community try to advocate about all aspects of diabetes, and work incredibly hard to raise awareness about Type 1 diabetes Living and Research, and how there isn't a cure. That it isn't our fault. Now, it appears we'll have to work even more to achieve this.

8 comments:

Jonkarra said...

Well about 20% of type 2 diabetics are slim. I dont know the percentage of overweight people who have type 2 but its a small minority from what I saw last. Granted I accept that you can be free of symptoms in most cases if you are a normal weight, but you are still type 2 its just that you arent experiencing symptoms.

As for the complications they are universal. But shows like this just perpetuate the stereotype that all diabetes is self inflicted. When I dont believe that is so even for type 2's, but a lot of type 2's can be free of symptoms if they lose the weight.

But if they are gonna do this type of show it should go through all types of diabetes and also remind people there are plenty of type 2s who are of normal or even underweight.

Scott said...

I saw the Oprah show (I watched it on DVR), and while her intention was probably good, she also did misrepresent the facts and was somewhat selective in the info. shared. I agree with all of your points about scare tactics (we KNOW those are ineffective) and featuring of Laureen, while hardly even noting the unique challenges to managing type 1 vs. type 2 (weight loss and diet aren't as big of issues, but trying to juggle all the variables in precisely the right combination is).

She also missed a HUGE opportunity to talk about the enormous cost of managing diabetes, particularly cases that cannot be prevented, and how 47 mm Americans lack any insurance coverage, and given that roughly 6% of people in the U.S. have diabetes, of the 47 mm with no healthcare cover, we can conservatively estimate that approximately 3 million Americans with diabetes have no way to pay for their extremely costly treatments. Walgreens isn't doing anything to help that not-so-small group of people, are they?

Cara said...

I wasn't 21 yet when my primary care physician looked at me and told me the same thing your childhood endo told you. I was at 12.1 at the time. And there was no idea who long it was there before I went in to get tested.
I wonder if I've crossed that line too. Sigh. It's terribly scary at times. But until it hits, I'll do the best with what I have and pray that my good care now makes up for the horrible care I had in high school and college.

Kathy said...

Well written post. I could not agree with you more. It is disappointing that this opportunity to give a large audience complete and accurate information was missed.

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JT said...

Good job, well written, M.

What SHOULD and COULD have been the point of the show was to warn people to take warning signs seriously, to get diagnosis and begin treatment promptly. That's something that could have been useful, helped to save lives. But she's not up there to do that. She's there to sell advertising, through whatever theatrics it takes.

I used to think she was using her position to help others. After my siblings and I each wrote her show at least 3 times each, asking for help with our mother's Hoarding Disorder, and never even got the courtesy of a reply... I realized she couldn't care less about those struggling with the condition. Sad part is, she might very well have been the ONLY person my mom would have let come in and get rid of all of that stuff. We told her company that when we wrote. It was something she could have done easily, with little or no expense... and not even a reply. So I'm disappointed, but not surprised, to see that she sensationalized things to suit the show.

Live well,

JT

Anonymous said...

Thank you for posting a well-balanced, thoughtful response to that show.
I am one of the "other" types who have yet to be recognized by the medical profession. I use insulin, because the sulfonylureas didn't work (20 years ago, that was all that was available), and I am all of 6 lb. overweight.
I really resent the finger of blame that is pointed at Type 2 diabetics, because while it might be preventable for some, it's not preventable for all. And I think the media should always be clear whether they are talking about Type 1 or Type 2 diabetes. Forget about us "others" for the time being -- I don't need special recognition, but my heart goes out to those who are misunderstood.
Natalie Sera