Immediately following the airing of The Oprah Show episode on Diabetes: America's Silent Killer, I received a heart-wrenching email from a worried mom of a young son with type 1; reading her words and bearing witness to how sensationalized misinformation impacts not only those of us with all types of diabetes, but the ones who love and care for us, as well, elicited quite a few emotions from me. Tears welled up in my eyes as I read the email, so grateful that she reached out to me on behalf of her little boy, panicked, confused and fearful after the irresponsible way Dr. Oz & Oprah chose to feature the fate of those with diabetes--particularly the jarring segment with Lauren, the type 1 double amputee.
As a well-informed mom and advocate for her son, she realized that by Lauren and the Great Oz stating her amputations were due to eating sugar and carbs when she was younger thinking she'd "just take more insulin and that would take care of it" implies that the damage was done when she was young and caught up with her despite self-correction and management and wondered about further implications of that, knowing that that's the same thing we do now: supply insulin in proportion to carb intake and bolusing for correction with our carb to insulin ratios.
My heart broke for this mom imagining her little boy without limbs or hope for a future filled with all the things parents dream for their kids: happiness, health, peace-of-mind, grandkids. And while I admit my response is impassioned and a tad overwrought, I felt it important to share it with you today, in case anyone else affected by diabetes is listening. Here's my reply:
Dear Mom of T1,
Thanks for reaching out. Dr. Oz's segment with the double amputee was very misleading and unfair. The show was disappointing and did an awful job of addressing type 1 diabetes; in essence, glossing over type 1's in order to make their sensationalized point about type 2's.
I grew up with diabetes in the 80's. We followed a strict food plan of exchanges that was higher carb and lower fat and mostly wrong based on what we know now about carbs. We had lesser quality insulin and my first blood-sugar testing kit only offered a general idea of where my sugar was based on color (color-coded--I remember a lot of 180's and 240's). And I was growing and changing all the rest of it.
All I can say is this: Your son will be alright.
He has a mom who takes the time to write such emails and do her research and is pro-active in advocating for him. He has a pump and already knows the deal about carbs and insulin. My parents were far less engaged and we lived in the age of two shots a day no matter what. I've had t1 for 21 years--I do not take perfect care of my diabetes and high school and college saw a lot of rebellion from me in terms of wise choices--many times not choosing the best for myself. My A1C tends to hover around 7, though has been higher many times throughout the years. I only recently started using an insulin pump. I test a lot and bolus accordingly, but I do not follow a super low-carb diet. I have lived in rural India for 3 months (no running water), Taiwan for 2 years, Germany for 1.5 years and traveled to China, Europe and all over--all with diabetes.
I do my best.
I gain weight.
I lose some.
I eat my greens.
I try again.
I get highs.
I get depressed.
I get lows.
I nail it.
I eat carbs.
I am 32 years old and have no complications after 21 years of the disease and very imperfect handling of it throughout the years; but diabetes is an emotional disease and I've done the best I can. Sometimes my best isn't very good. Other times I kick-ass.
I only know what it feels like to be a type 1 diabetic, not a parent of one, but I imagine it is so scary at times. A helpless feeling. But your son will grow and the best you can do is teach him what the best choices are and let him feel empowered over his own diabetes and his own life. Feeling like you can't trust your body is scary. Feeling like your son is doomed to amputations and a lesser life, while understandable after such a show, is just plain misinformation.
I've done many things with my life not despite my diabetes but because of it. It's helped me mature and grow and realize the importance of each day and each moment and that the world takes away in ways that aren't always fair, but always puts back something in its place that if you are willing to see, you can hold on to and know that good things are in store for you.
I'm sorry that Oprah segment scared you. I could barely watch it and I hate the notion that it sends--and how the amount of insulin you take--or that if you must take it at all-- "depends on how bad your diabetes is."
And I disagree with Dr. Oz when he says "diabetes is a controllable disease." It is not. It is MANAGEABLE but not controllable. Not type 1 anyway. And whether or not one's A1C is under 7 and thus their diabetes is "in control" or over seven and "uncontrolled" by medical standards, the truth is there are so many unknown factors affecting our bodies that it is at times a guessing game, albeit with educated guesses.
Hormones affect sugars, working at times against insulin.
Adrenaline affects sugars, again, working at times against insulin.
Stress affects sugars in unpredictable ways.
And insulin is a fat-storing hormone.
There are so many changes in childhood and young adulthood that you can't be scared off by the sensationalization seen on TV. A friend of mine has been type 1 since birth. She's 30 years old and healthy and happy with four healthy non-diabetic kiddos. My own sister, dx'd at eight, has three healthy kids and is doing well. I am doing well.
It sounds like you are doing everything right. An A1C in the 6's is great, especially for a growing boy. I am impressed you're reaching out and reflecting on the show, bold enough to challenge the assumptions and mis-information you find in the media, like we saw today. And as an aside, if the double-amputee on the show is 44, it means she grew up in an age where diabetes was harder to manage due to lacking technology and mis-information. She was likely on 1-2 shots a day, and maybe one before dinner; the insulin was not as effective as it is now. She didn't face amputation because of compensating insulin and carbs--my guess is she unfortunately had to suffer very high--and sustained high--bloodsugars over many many years to get to that point. It's sad that some of the little kids who grew up in earlier years are now adults who have to suffer the consequences of living in a time when information was erroneous and technology not advanced, but I know many healthy diabetics who are in their 50's, 60's, 70's.
Your son is blessed with a pump and a pro-active mom and while I wouldn't wish this disease on anyone, I want you and him to know that you can have a great life full of adventure and love and excitement and grand accomplishments--and that diabetes can actually be a motivating factor to help you get there.
Pardon the long overwrought response; I'm in a mood after that show!
Thanks for reaching out on behalf of your son.
He's lucky you're his mom.
Published On: February 05, 2010