If You Say "Brittle", There Better Be "Peanut" In Front Of It…

When I pack for a trip, even for an overnight, diabetes supplies go first. I tend to overdo it – I calculate how many sensors, pump supplies, and test strips I’ll need and then add at least three extra days’ worth. My Humalog and a few old school syringes go in my purse and away we go.

But, this time? Whoops.

My brain didn’t calculate correctly. (Once again, please be grateful that I’m not in charge of calculating anything terribly important for the good of the world. We’d be lost.) I’m on the tail end of a two week familypalooza visit in another state to celebrate the kiddo’s second birthday and I ran out of glucose test strips. In fact, I’m on my last sensor and my last set. So, yesterday morning, we set off to the pharmacy to pick up a True2Go meter/strips combo. (Love this as a backup. I get them at Walgreens for $9.99 in cases like this.)

Pharmacy Labels. Can't seem to find "brittle", "severe", or "noncompliant" on any of them.
Pharmacy Labels. Can’t seem to find “brittle”, “severe”, or “noncompliant” on any of them.

I brought the box up to the pharmacy counter and asked the pharmacist if they carried additional strips for this that I could purchase. (I usually throw the whole thing out when I’m done, but I’m curious.) He said yes, but then said: “But it comes with ten strips, so you should be OK.” I replied that I was a Type 1 diabetic on an insulin pump, so 10 strips may last me 24 hours. And then he said it:

“Oh, you have brittle diabetes.”

People talk about how, when they’re facing death, their life flashes before their eyes in a split second. Well, my diabetic life flashed before mine and then, before I could stop myself, I blurted:

“I do not have brittle diabetes. I have Type 1 diabetes and I do my best to keep my blood sugars in control, which means I test frequently. I hate that term. Why would you think I have brittle diabetes?”

His eyes widened and he apologized: “I’m sorry. This was the term they taught us to use twenty years ago when I was in pharmacy school. What term should I be using?”

Impressed that he asked, we went on to have a productive discussion about the terms “brittle” and “severe” when placed in front of the word “diabetes”. All diabetes is severe. Who chooses to determine that one person’s diabetes is better or worse than another’s?

“If I told you that I had breast cancer, would the first thing out of your mouth be a detailed story of someone who passed away from the disease?” I told him that strangers, upon hearing that I have diabetes, feel that it’s acceptable to give me the gruesome details about people they know who have died from it. I’ve gotten better at cutting them off politely and saying how sorry I was to hear about them, but that I was living and planned on doing so for a long time, but it still stings.

And it stung to hear him assume I had “brittle” diabetes, based solely on the statement I made about test strips. After our interaction (and the purchase of the meter and strip combo without additional strips), my emotions still ran high. It’s the labels that people place on diabetics without knowing our history or what we live with every day: “brittle”, “noncompliant”, “severe”… and that these labels are still in use today. I present the evidence…

Management Strategies for Brittle Diabetes – apparently, the term “brittle” is reserved for 3 in every 1,000 diabetics whose lives are rife with hospitalizations and inability to have a normal day. I was shocked that this article is from 2006. I had (incorrectly) assumed that it was no longer tossed around by the medical community. Wikipedia’s reference to brittle diabetes is beautifully stated:

This term, however, has no biologic basis and should not be used.

Thank you, Dr. Wikipedia. I’ll take that and put it on a t-shirt.

Ever been called “noncompliant” by a medical professional? Perhaps not to your face, but on a medical chart that you read? I have. But when only 57% of diabetics have an A1C under 7.0%, there’s a lot of us floating around.

It’s a horrible description of a person. We are people, not just diabetics, and the term paints us with a very broad brush. What about non-diabetics who don’t lose the 20 pounds the doctor suggests at a previous visit? If the patient has high cholesterol in a few lab results because they didn’t cut out the butter from their diets? Are they termed noncompliant? They should be, if one uses the same logic. Noncompliant implies that we are going against what the medical professionals say we need to do, but doesn’t take into account outside factors. I was termed “noncompliant” even though I was doing everything I could to keep my blood sugars stable. I felt guilty for years about it. It’s a highly charged emotional label for me.

This terrific article says that “noncompliant” should be banished – and I wholeheartedly agree. Peters states:

Calling someone noncompliant is not just rude; it is amazingly inaccurate and vague, and it leads to obvious treatment interventions that are just wrong and worthless. If we continue to refer to patients as diabetics or noncompliant diabetics, no change will occur, and patients with diabetes will not reach their treatment goals.

(He also talks about “diabetics” and “PWDs” in the article. Great read.)

“Severe diabetes”? I’d love for someone to give me the scientific parameters of what “severe” is… and I can’t believe that I found this article in which the researchers use the term “severe” in front of “diabetes”. My friend Kelly’s got the right attitude (and answer) in one of her awesome blog posts: Lesson For The Day – Don’t Put The Word Severe In Front Of The Word Diabetes Ever.

Whether you call me a diabetic or a person with diabetes isn’t a big deal for me; I answer to either. What I refuse to answer to is the term “brittle”. (Unless, of course, the word peanut is in front of it.)

 

 

0 comments

  1. Reva

    “I was termed “noncompliant” even though I was doing everything I could to keep my blood sugars stable. I felt guilty for years about it.”

    I had a similar occurrence when I saw a paper in my chart in which my doctor had checked off that my diabetes was “uncontrolled”. That term stuck with me for a long time, and was even more dismaying because I was trying really hard to keep my blood sugars stable. I’ve never really heard the word brittle used with diabetes, but I’m sure that if I did, I would have a similar reaction.

  2. Scott K. Johnson

    I too get a bit worked up when I hear these things. I often use the pregnancy thing – that there is no severity to pregnant. Either you are, or you aren’t – which is kind of funny coming from a guy, no?

    For the record, I laughed out loud when I read the title of this post. 🙂

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  6. Sarah

    Depends on the person. I am most definitely a “brittle” disbetic and feel absolutely zero shame in declaring so.

    Why should I? I put lots of effort into
    staying alive and I’m proud of how healthy I am.

    Fact is, T1 diabetes is a variable disease. There is a spectrum of people with variant control, variant complications, and variant day to
    day hypos/seizures/unexplained BGs/quality of life/effort required to maintain BGs. My diabetes is “bad” since I would likely rapidly die of acute hypo or hyperglycemia if I did not stay on top of it 24/7. Maybe not the case for you.

    Labels are annoying and frustrating, but I’d rather be “brittle” than “noncompliant” or “uncontrolled” any
    day. The later makes those who struggle to control their disease with best efforts seem like failures when the disease itself is to blame.

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