I was reading this article in the NY Times from 2004: Diabetes: Faces of an Epidemic; Type 1: The Morning I Will Never Remember, By Anne Rice. She describes the lead-up to her diagnosis with Type 1, a horror story worse than many I have heard. But then at the end of the article she says this:
"In the beginning, when I was lying in bed, the basic demands of diabetes – the monitoring of blood sugar, the taking of insulin twice a day – seemed overwhelming.
Of course they aren’t. In fact, for a self-employed writer who works at home, and hasn’t taken a drink in decades, the demands are next to nothing. Eat well; forgo sugary foods; do a simple finger-stick blood test four times a day; and inject yourself with a needle so fine it causes no pain whatsoever. The kits for the blood tests are sold in every drugstore; so are the needles; so is the insulin. And there are books galore about the disease with abundant recommendations on how to survive with it. You can learn as much or as little as you want, and in my case I wanted to learn as much as possible. Endocrinologists guide you to the right dosage, and order the requisite tests to confirm your progress. Once a year you see the eye doctor and the heart doctor. You watch your health; you care more about it."
Such a understatement, “the demands are next to nothing,” from “one of us” disservices the diabetic community. The demands are not next to nothing. How could she think this? I feel her perception–even if it is true for her (and if it is, good for her, I guess)–helps contribute to the commonly misconception that type 1 diabetes is “not such a big deal.”
That’s quite an understatement indeed! Yea, it’s no biggie having diabetes. Just get supplies from any drugstore, avoid sugary foods & read some books. And good endos are easy to find & merely take tests. Why haven’t the rest of us figured out this formula? It’s so simple. Guess we’re just whiners, millions of whiners who aren’t as adept as Ann Rice.
I can only make the assumption that she’s a fairly recently diagnosed T1 who has “apparently” in these early stages has “overcome” the shock of diagnosis and has taken the bull by horns to get to grips with her “new” life as an insulin-dependent diabetic. For some T1s the first few years can just roll along seemingly without much effort, but as the years turn into decades the realisation will hit them that diabetes is not such a push over and what could be accepted as a minor inconvenience in the early years has now taken on a darker tinge. I guess she’ll learn this in the future and will experience a whole host of contradictory feelings about diabetes.
“The demands are next to nothing.” - Ha! Maybe give her a few years for complications and reality to kick in and get back to her on that one. As for testing 4 times a day…I can’t remember the last time I tested less than 10 times a day, but maybe after almost 15 years I’m still just not dealing with the “basic demands of diabetes” as well as good old Anne Rice?!
I’m very happy for MS. Rice that she has such a positive attitude in coming to grips with her disease. She has combined hard work at her craft with obvious gifts that put her in a position that few of us enjoy. She obviously has the financial resources to cope with any problems that arise from diabetes. Add to that her celebrity and I’ll bet she does not wait long to see a doctor, nor comparison shop for the lowest price for test strips, glucose tabs and other items like many of us do.
I hope things go well for her, but I doubt that she will be sneaking an extra couple of sugar packets from McDonald’s to tide her over.
Well the woman is a Fiction writer… I guess everything is easier when you have money and price is not an issue. Her assistant probably makes all her appointments orders all her Meds picks them up , reminds her to test so that she (the assistant ) can keep her log. Her personal chef finds all the right foods her maids clean her house and do her laundry. The landscapers do the lawn. So in her World I guess " the demands are next to nothing"…But in my world when i call the Endo I get put on hold, transfered ,on hold again have to wait a couple of months cause my Endo is booked. You get the picture… Maybe her and the cured Halle Berry Can collaborate and write a book about all us diabetics that just don’t get it…( oops sorry for venting I’m experiencing a high…LOL)
Let’s see… the article is from 2004, so she has had the disease for 5 years. Perhaps the NYT should do a follow-up to see if she still feels the same way.
However, I will point out that YDMV. Some of us struggle hugely with incredible complications, etc, some don’t. I am one of the ones with few complications, and I agree with Ms. Rice that the needles are thin and don’t (usually) hurt that much.
I was surprised that in the full article she inaccurately described what caused her diabetic coma:
“My body, unable to fight the increasing buildup of sugar, had begun to starve because the sugar had stopped the normal absorption of nutrition. I had also become dehydrated; hence, the coma.”
Huh?
Now back to the original question. Does it do a disservice to us to say it is easy? I think not.
Demands are next to nothing? Hmmmm. I’ve never felt that way about my diabetes. IT can be an incredibly overwhelming disease. Then again, maybe Ms. Rice had someone else do it all for her.
Honestly, in the few years after my diagnosis I thought similarly…and it wasn’t until life itself became a bit more complex for me that D became more difficult to manage… not because my disease had changed, but simply because I had so much more going on. Now, with 3 kids, it’s something I am constantly aware of and considering before every decision I make.
I would think that with her “resources” and life style it hasn’t been that big of a deal. She emphasizes what one must do and the availability of supplies and treatment. Ms. Rice does not address the financial challenges associated with eating well, buying supplies, seeing an endo. (if one is within 50 miles), etc. There is also the issue that we all tend to react differently to diabetes, where some suffer further complications while others do not. I find her perspective to be a bit narrow.
I don’t know how I feel about that. It seems she’s had diabetes for a least 5 years now, 2 years longer than I’ve had it. If she’s not having trouble living her life with it, good for her. I’m baffled and surprised that it’s possible, but maybe she has a steady routine and a personal carb counter with her at every meal. Hmm, if I get rich, that’s who I’ll hire. I don’t need someone to get my coffee or make my appointments. just do the math and tell me the perfect amount of insulin for everything I eat.
I believe part of the reason Type ! does not get the type of funding it deserves is because of statements like this .
" Oh it is easy to handle" It is a fine line between the true cost of D( physical, mental,psychological) and an upbeat approach. I think it does do a disservice to take it so lightly. I had a friend that was also diagnosed with D and the first few years she thoiught she had it down, well in year 4 the breakdown as reality set in.
Those of us affected by D know how it really is, but those who do not have it think, “oh big deal take a shot and carry on, not so bad”. 43 years here with D
I know I might be upsetting people on a UK bank holiday…Though I am going to agree with this lady in the NY times…I only have had diabetes type 1 for a bit over a year, and have gone through lots of emotions with it. Though I have to admit that I have only found peace with this after I decided it was not a big deal, as otherwise Type 1 freaks me out.
Since I have told myself it is not a big deal my life has become easier, as it is a given in my life, and I have nothing in my power to change this illness for myself. There is no cure, and all I have to do is communicate and read about this illness as much as I can. Do my test strips, watch what I eat stay active and hope for the best…
Ok I could continue moan (as I have done this in the past) about the fact that this illness has stolen away a part of my freedom (all the time testing/pricking consumes, the choice of food), has made my future more unknown (all the illnesses that could creap up) as I said the best way for me to deal with T1DM has been to make it clear for myself it is not a big deal as it is a permanent part of my life.
I guess it is how we all deal with it, and guess it is not the same for all of us, hence maybe it is not our place to judge this lady as well. I am pretty sure that my thoughts on T1DM would be different if I had it as a child and maybe 2 decades back even as an adult when still not much progress in the info for T1DM was available. I guess I am just one of the lucky few that got it as an adult and have had no real complications yet. I will keep you posted in 5 years time
What a woman! I wish I had that mentality to believe it isn’t such a big deal. Unfortunately to me and many other type 1’s I know, it is a big deal. I am sure people who live with it put up a front because being a debbie downer doesn’t help a situation. But it is a HUGE deal and it is a hard reality to face and live with it 24/7/365/life.
