Can T1’s have a truly normal life?

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1

As an Old Schooler, I must comment on JDRF’s infamous 1 in 20 advertisement. I was shocked at some of the parent reactions in the blogosphere. Here’s a sampling:

“I spend every day trying to tell my son that he’s normal. What am I supposed to say when he sees this ad?”

“This is too scary for a parent of a newly diagnosed T1 to read.”

“This is not appropriate for T1 children to see.”

“Why does JDRF feel the need to overdramatize?”

“I don’t want my child worried she’s going to die.”

Why do some parents of T1 children have this delusion that their child is “normal”? I was diagnosed at age 6 and it was pretty clear from the start that my life was going to be dramatically different from other kids’ lives. Can people with T1 succeed in all areas of life? Sure, but you also have to teach your kids that it will be much more difficult for them, just as things are more difficult for kids with any disability. (Yes, I said the D word.)

Reality check: Years ago, I attended a presentation by Jay Leeuwenburg, then an offensive lineman for the Indianapolis Colts. The talk was about his experiences with managing T1 in the NFL. The audience largely consisted of young boys and their parents, although I was there as an adult to get some tips since I was a competitive tennis player at the time. In Q&A time, I waited for all the kids to ask their questions and then I asked Jay: “How did the T1 affect you in the draft? Were you not considered by certain teams?” Jay paused and looked around at all the kids in the audience before answering honestly. He said he felt that he should have gone higher in the draft and that he knew that some teams had serious reservations about having a T1 on their roster and would not take him because of it. Many parents in the audience turned around and gave me the death look because I asked a reasonable question that did not come with the rah-rah answer they expected. I think it’s the same mentality with the JDRF ad—some parents only want to hear the positive, not the realities.

The ugly truth is that 2-4% of people on insulin die from hypoglycemia (varies depending on source). I’m sorry if that upsets you—just turn off your computer and go take a walk until you can get your mind around that. I can’t understand parents of T1 kids who are in denial of the risks of taking insulin and the risks of a severe low.

Reality check: A T1 friend of mine had a severe low on a plane. Flight attendants figured out she was unconscious and not sleeping after the plane landed. She was in a coma for a week but survived. Because of the brain injury, she now suffers from short-term memory loss, and also has trouble recalling events in the last 4-5 years. She is in a support group for young stroke victims, since their issues are so similar. Her life has been destroyed over this. Believe me when I tell you I think of this girl every day and how easily that could have been me. But some other mutual T1 friends shrugged it off, saying that could never happen to them. Denial is a strange thing.

I do support the JDRF and these ads. The more we say that T1’s can have a “normal” life, it takes away the urgency of finding a cure. The more we say T1’s can have a “normal” life, the more people think that insulin is a cure. We should not minimize how bad living with T1 is (with inferior technology like grossly inaccurate meters) and we have a right to be angry. We as people with D have no right to get research for a cure if D is not a big deal. Minimizing T1 in the press and in public arenas is a big mistake.

2

We spend much of our time tweaking doses and bolusing and rushing around eating so we can do all the normal activities and have a decent A1C. So much so, that even in our community of living with it every day, we do need in-your-face things like the 1-in-20 JDRF ad are necessary to remind us of the never-disappearing risks.

As to reminding the public, or parents, of the risks, I don't think a reminder hurts any at all.

I'm not sure how old school you are (you don't look very old!) but I completely freaked when I saw the movie Steel Magnolias in the movie theatre. (Girlfriend made me go watch it!). But let me tell you, I've had a couple 911 call/Glucagon/Emergency Room trips in my life and I survived them. I wear them as a badge of honor. It's important for me to know that we can get beat up a little bit by the bad guys (Harrison Ford style as long as I'm making 1980's movie references) and still come out a survivor.

3

After having T1 for 37 years, this is my normal. But it's not normal. :)

4

I am frankly offended by the 1 in 20 scare tactic. Not only is it a grossly wrong number, it is used in a misleading manner. I think it is probably more like 1 in 200 to 1 in 2000. Most T1s don't die from hypos, they die from other complications, such as CVD, violent deaths, DKA, suicide and acute metabolish complications all which occured at higher rates according to a Norwegian Study that was cited in the supporting JDRF references.

I suspect that in fact death hypos are much less frequent in the last decade as blood testing, insulin pumps, CGMS all have become standard practice. I am unhappy with the JDRF for using misleading scare tactics in a scorched earth campaign.

5

I concur. It's not normal (in fact, I once blogged about it here on TuDiabetes, see http://goo.gl/G93pO); the numbers As for the ad being misleading, the 1 in 20 is a fact and people can choose to ignore this fact, but it doesn't mean the fact has changed. You hit the nail on the head when you wrote that "We as people with D have no right to get research for a cure if D is not a big deal. Minimizing T1 in the press and in public arenas is a big mistake." Unfortunately, as "Showdown With Diabetes" author Deb Butterfield once wrote (see her article at http://goo.gl/bupZZ ):

We send mixed messages about diabetes. In an effort to encourage optimism and confidence diabetes magazines and educational materials show images of active, healthy people “managing their condition” with a “no problem” attitude. Pharmaceutical companies use images and slogans of smiling diabetic people holding syringes and blood glucose monitoring equipment -- the symbols of diabetes. But the disease itself is not revealed.

The public perception of diabetes is influenced by our personal testimonies, and we have portrayed a disease that is no more than a minor inconvenience. Diabetes has long been a disease of blame and shame with accusations of non-compliance, mismanagement, and “cheating” on diets. Diabetic complications have served as a line of demarcation between those who are proud to speak out and those who hide. People who are doing well with diabetes, who are congratulated and respected for their ability to control their disease, become the faces that peer out of the pages of articles, advertisements and diabetes education brochures.

By showing the world only the happy face, and not the tragic disease beneath, we are endorsing the prevailing philosophy of tolerating, rather than curing, diabetes. For policy makers, philanthropists, employers, and the public to feel compelled to cure diabetes they need to understand that diabetes is:

  • costly for society and that those costs are rising

  • pervasive and the incidence is accelerating

  • soul-destroying and there is still no cure

  • and, above all, that diabetes is curable

In order for this disease to be cured, there needs to be a fundamental shift in the way diabetes is viewed. We need to close the gap between the perception of diabetes as a controllable condition and the reality that it is one of the world’s oldest, deadliest, and most pervasive diseases.

Thanks for your insightful post.

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6

Agree 100% Scott. If you die of cancer, you're a victim. If you die of D complications, you're non-compliant. Apparently D is so easy to control with our pumps and our CGMS that only the real delinquents would suffer any adverse consequences.

7

You have a point.
I spent most of my childhood (after being dx!) convinced I was not different from any other child in any way.
Did it help me? Maybe. Maybe it did good to me at the time. But growing older, I experienced more and more situations in which I got to my limits.

As much as I want to be seen as "normal" - I far from it.
Lately I've been asking myself a few questions about this normal.
Does a normal (in this case, healthy - meaning without d) person have to eat when they absolutely don't want to? No.
Do they have to stay up at night because they are in danger of dying in their sleep if they don't wait for their bg to raise to a save level? No.
Do they have to stop exercising because they have a low bg? No.
Do they have to skip exercise because their bg is too high to be physically active? No.
Do they have to check whether they have everything they need to manage their disease whenever they leave the house? No.
DO they always, always have to think about what they eat and how this es going to affect the following hours? NO!

The list goes on and on. There are so many things that would be different and easier for me without diabetes.
I can't deny it anymore.
Yes, it has become "my normality".
Yes, I am able to have fun, and have a great day in general.

But I probably got ripped of the ability to do all these things without worries that one day in 1998 when a nurse gave me my first insulin injection at the hospital.

Don't get me wrong: I think it is very important that parents don't make their children feel disabled or left out! By trying to live a normal life, we (the children and former children with diabetes) learn to live something very close to a normal life, and that there are few restrictions for us.
But it will never be as easy for us as for a "normal" person.
I'd give a lot for a cure even though I know I can reach 100 and travel the world - but it could be so much easier and more carefree.

8

I think parents are afraid and feel guilt for their child being different. I dont think they want their child to feel different in the sense that its something wrong with them. Like they have koodies or something, lol... I am an adult and my mother cried on a routine visit to my endo, weirdo...lol...The truth is they are different, but its not a bad thing its just different. I think if parents would take the time and encourage their kids that there is nothing wrong with being different it would help. People always have a strange reaction to what they think something like living with T1 diabetes means because its not normal but really who wants to be "normal"??? Whatever that means....

9

How many times has FaceBook been lit up with blue candles in the recent months? This is evidence that it is a statistic that we need to be aware of. I am awake every 2-3 hours on a nightly basis to check my daughter's blood sugar. She is only 9 and I am already dreading the time when she goes away to college...who's going to check her in the middle of the night? Am I going to get a call that she never woke up? If this ad brings the severity of T1 to the forefront of everyone's mind, then I'm all for it.

10

In addition:

To me, normal has always been e.g. that my parents took me on holiday/vacation and let me choose my meals even though none of us could be sure about its carb count and planned trips on a "when" and not an "if" basis.

Technically, they took me everywhere they would have taken a child without D.
But it's hard to forget about the uncountable times we've had to take extra breaks because of something bg related, and that we had to carry a lot of stuff around, and other things.

Thinking about all the extra planning keeps me aware of the fact that things can go very wrong very fast.
Our lives may be in danger a lot more often than we think. Personally, I'd probably go crazy if I started counting how many times I've been in far from save situations while having a low blood sugar!

I think JDRF has every reason to make an ad like this.

11

I agree. These parents are setting their kids up for major disappointments later in life to let them think they are "normal". Some already have a hard time at school with other kids picking on them and they don't fully understand why.
Diabetics are not "normal". If we were, we'd be able to go into the military. Or we'd be able to sleep through the night with no worries. Or we could breeze through pregnancies.
Truth is we all will die one day. Maybe it will be from d-related complications such as hypos. Or maybe we'll be hit by a car.
Some people just need to stop being so nitpicky and realize they can't raise their kids in a bubble.

12

I agree! I teach Sophia that everyone has something. Some worse than diabetes and some not, so let's not focus on how horrible it is. Let's focus on treating it the best way we can, having lots of fun, being healthy and happy. She can do anything she wants but her diabetes always has to be taken care of first. That being said, at 4 1/2 yrs old she understood that she must have insulin or she will die. I don't "sugar coat" it for her because she needs to know! And I or my husband are up 4-5 times a night checking her bg because I can't stand the thought of her not "waking up" in the morning. The statistics can be argued till time freezes over but I know it is a real risk, especially on a pump that could possibly malfunction and give too much insulin. I am not ok with Sophia being one of those statistics and I too worry about who's gonna check her bg in the middle of the night when she's off to college.

13

Excellent post Lara.

First of all, I'm sorry to hear about your T1 friend suffering from that sever hypoglycemia...brain injury never occurred to me as a hypo risk, it is definitely something to ponder.

Scare tactics don't work on me, personally. I refuse to fear my disease because that, in and of itself, will decrease my quality of life...my "normal" quality of life. Don't get me wrong, I have a very healthy respect for T1 diabetes and what it can do to us...but there are other ways to motivate people rather than using scary statistics (I don't know where 1 in 20 comes from yet, seems a bit steep to me). It's just like surfing...you always have to respect the ocean, but if you spend your time fearing it you will never stand up to enjoy the ride.
So I have to disagree with you when it comes to us living a "normal" life. I know exactly what you mean, but my personal perspective is that my daily life is only "different" than non-T1's, but just as normal as anyone else. Perhaps a bit more challenging, but isn't that just relative? Who's to say my life is any harder or easier that a "normal" person? It's all about perspective...

Do I think finding a cure important?...of course (although I would settle for a cause or perhaps even a clue...) I think finding a cure for T1 would be one of mankind's greatest achievements, for sure. But honestly, I've accepted the fact that a cure may never be available for me, personally, in my lifetime and I'm perfectly OK with that.

14

According to German standards the 1 in 20 claim is far from the truth. It is misleading and it associates insulin with death and not life as it should. It really makes me angry when my disease is abused to justify funding for projects like the artificial pancreas (AP) or stem cell research. The AP will never work if the problem with the unreliable sensor technology is not solved - especially the low detection. The JDRF has decided to invest money for a project that is mainly a software development project. It is like developing all of the algorithms for a car that can fly with antigravity. If you are done you just have to wait for the antigrav unit to be developed (MUHAHA). A nice mental exercise and payed well of course. But maybe they are just naive and think that the working AP will put the companies under pressure to develop better sensors - as if pure market size is not enough motivation to do so. And now this: a 1 in 20 scare tactic to justify their questionable investment strategy. Congratulations for creating a false image in the public! This is not about being normal or not. This is about using false figures for their own agenda. It scares parents, it scares friends, it scares companies and for sure it will not help anyone to better deal with this disease. Actually it also amplifies the an A1c of 7 is enough attitude because "lows can kill you". But bad glucose control is the main reason for complications and death - not lows. No one seems to feel responsible for all the slow deaths due to kidney failure, heart disease, stroke, dehydration, infections, blindness, DKA and so forth. But for the instant death they all feel responsible and jump start to prevent it at all costs. Because for quick somebody must be guilty and for slow they could all shy away from their part of the responsibility. We all know that you can only really understand diabetes if you have the disease. But does it help to share all the hardships it brings? I want to be perceived as Holger and not as Holger the T1 diabetic that might die soon because 1 in 20 does - as seen in the JDRF ad. This false association does more harm than good. Without these ads people might think that we need no cure because it seems treatable like Scott wrote. But from the economic perspective the pure costs for the health systems worldwide are the best justification and driver for a cure.

15

I am a type 1 diagnosed Jan 1983 ...not a young one , but at age 42 1/2 ...our observation is ( Hubby agrees ) , that it has an impact on fam . and me since the day !!
Our life style has changed : more restricted as in on hourly and daily basis ." D" interferes with anything we do , one way or the other ...from moment to moment .
However : SMILES sells more than a FROWN ...hope you are smiling :)

16

The other question I'd ask here is does ***anybody*** really have a normal life? Diabetes is a ghastly disease I wouldn't wish on anyone but it sort of focuses a lot of my bitching and moaning on "BG 120, fix, wait, test" and pretty soon it's two hours later. It makes the day go by, hopping from one bolus to the other, with one eye on the CGM and one itchy trigger finger on the pump. A lot fo the people I work with ■■■■■ and moan about stupid crap at work all day long. Sure, there's Dilbert stuff that is astounding but, if you step back, a lot of it is kind of funny. I am not sure anyone is really normal. I busted out "Dharma Bums" the other day when I needed a slim book for my "car book" to read at doctor's appointments, oil changes, dancing chauffeur duties, etc. Their pushing boundries away from normal was maybe in a more normally oriented era with, at least, less TV channels to melt your brain with, but people were unhappy then and people are unhappy now and people with diabetes are unhappy and people without diabetes are unhappy.

17

To those who struggle with their being normal or not I really recommend this moving speech by Aimee Mullins.

18

My parents never even tried to pretend I was 'normal'. My aunt had been T1 since the age of 9, and before I was even diagnosed at age 6 she'd already had a kidney transplant, undergone many laser treatments for retinopathy.....and within a few years of my diagnosis she lost both legs below the knee and began having heart issues. There was no way to pretend I was normal when the very real complications were staring me in the face. That's NOT to say I was told I'd have the same problems; it was explained to me that I had better care than my aunt did as a little girl and so I could likely avoid those issues. However, I knew from the time I was 6 that I was not like other kids, that I'd have this for life, and that it was serious.

19

What bothers me is that you quote that 2-4% of people on insulin die from hypos, and that doesn't add up to 1 in 20. If you take your higher number, 4%, that amounts to 1 in 25, and the lower number would be 1 in 50. But I'm not sure even that number is accurate. And I'm not sure the dead-in-bed syndrome is always or even usually due to hypoglycemia, because the conditions in which these children are found are NOT consistent with a hypo. Children without diabetes die suddenly too, and it's just as tragic, but we don't usually hear about it, because we're so focused on diabetes.

That said, I agree that the public needs to be made more aware of how serious diabetes is. There is a fundamental conflict of interest -- people with diabetes want to be afforded all the opportunities that non-diabetics get, including, for example, flying planes and scuba diving, but on the other hand, to get funding for a possible cure, we need to portray ourselves as suffering.

My own take on the ad is that it was unnecessarily scary -- a more realistic ad might have shown a line-up of blood-filled strips to reflect how many times a person with diabetes pokes their fingers, or a 4-pane picture of someone wondering how much insulin to take for some delicious looking meal in front of them or something else reflecting the reality of LIVING with diabetes rather than dying of it. Even a picture of a parent holding down a toddler in order to give them a shot.

I think we should be realistic, both about the good and the bad -- I hate the Medtronic box of sensors with the picture of the slender, smiling, healthy looking young girl about to dig into a large slice of carrot cake! I'm not disabled by diabetes, but it sure isn't the life I had before I was diagnosed!

20

Natalie, I'm quoting NIH data as 2-4%. I always read that death by hypo was actually underreported, or attributed to other things like cardiac arrest.

I like your ad ideas... maybe someone from JDRF will read them!