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DiabeticallyYours

Living life as a Type 1 Diabetic.

Type 1 diabetics; misunderstood?

Let me start by saying that while I understand what type 2 diabetics go through a daily basis, I believe that Type 1 diabetes should need a whole different name. Why? Because of the misunderstanding between people, between professionals, and I’m a little tired (especially today) of having to explain to everyone the difference between Type 1 and Type 2 over, and over, and over again.

I went to the pharmacy today to pick up test strips. Something I do very often on a monthly basis, ever since I was diagnosed with type 1 diabetes. I recently changed my strips from One Touch to BGStar because of my new glucose meter; the iBGStar. So I’ve only picked up a box of 100 test strips about 2 weeks ago, which makes an average of 7 tests a day. Which is realistic, quite frankly. Upon my arrival, they give me my Humalog (Insulin vials) but let me know that there are still 24 days left before I can renew my test strip order.

Um. Excuse me?

I tell the (new) pharmacist that I’m a type 1 diabetic, I need to test my blood glucose quite frequently. Before and after meals, when I wake up, when I go to bed, before and after physical activities or just when I feel plain weird. She tells me with a very serious face “You’re only supposed to test about 3 to 4 times a day.” And I look at her with a very confused face which reflected something like ~How dare you tell me how to control my disease~ and ~Since when?~ and this is when I repeat myself. “I’m a type 1 diabetic, I need (I emphasized on the needing part) to test several times a day.” Especially these days, with the weight loss and the very frequent lows. I need to recalibrate my pump’s basals, so how am I supposed to know how much insulin to deliver if I don’t know my BG every few hours?

She looks at me, a frown on her face, clearly showing that she did not understand why I need to test so often. One of the difference between type 1 diabetes and type 2.

No, I cannot control my blood sugar with what I eat. No, I cannot ~cure~ my disease. I know I don’t look sick, I am just pancreas-disabled, for life. No, if I’m low I don’t need more insulin. No, that is not an mp3 player, it’s an insulin pump. No, you would not die if you would have to inject insulin multiple times a day. Stop saying that.

So she goes ask the head pharmacist (or what I assume to be, much older gentleman who nods when she speaks to him, looks at me, nods and smiles a little as he recognizes me). She comes back saying they will call me tomorrow because they are out of BGStar strips. It’s okay, I mean I still have a few to last me until tomorrow. Besides, it’s not like they’re out of insulin or anything.

So as I was walking back home, my son in his stroller amused by his surroundings, I kept wondering why. Why is it, that even professional people, don’t know about type 1 diabetes? No, not that they don’t know, but they are clueless about it? They think because you are diabetic, you cannot eat what you want. I actually can. How many carbs? 15? Here, let me inject insulin, I’m good to go. I’m not type 2, this type of diabetes is different, on so many levels! But yet again, I’m labeled as if I was because society does not give proper education on this kind of disease.

I was a little… Not insulted, but deceived, maybe. Especially that I had to explain, again, what type 1 diabetes was, to a pharmacist.

Did you get your diploma in a Cracker Jack box, missy?

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14 thoughts on “Type 1 diabetics; misunderstood?

  1. I’ve often thought that the two types should have completely different names, but recently (was it yesterday? I think on DMine) I read that Type 1’s need Type 2’s because of the T2 group’s sheer numbers, which can be used in advocacy forums and government lobbying to get the attention it deserves, even though the two types are quite different. The biological cause is different, but the symptoms are much the same, so the treatments can sometimes overlap.

    Personally, I’m OK sharing the term “diabetes” with the T2 group, but I wish the descriptions had names rather than numbers. Is #1 supposed to imply “the best” while #2 means “runner-up”? Semantically, it sure seems that way, but of course it’s not true. Calling them “insulin deficient” or “insulin resistant” might be a better way. Perhaps too scientific for most, and certainly more easily to mis-hear than “one” or “two” (or “un” or “deux”), but it’s descriptive enough for those who care to pay attention.

    As for your pharmacist, it may work different in Canada, but in the US, they can only fill the prescription that the doctor writes. There’s little point in arguing with them (though I have found sympathetic pharmacists who would give me insulin or syringes, on the promise that the prescription would come the next day, because they understood the importance). They have no authority to decide what your medical insurance would pay for.

  2. ~~Is #1 supposed to imply “the best” while #2 means “runner-up”?~~
    I remember in diabetes class (When i was diagnosed, at the hospital) I asked myself the exact same question!

    I’m okay with sharing the term as well, but I think it’d be easier for everyone to make a distinction from the two. Maybe instead of saying “I’m diabetic” I should say “I’m type 1 diabetic” … Although I do most of the times. Hah!

    • Haha, to be honest I think a separate name makes more sense. They are so entirely different. Its like how people with thyroid problems see an endocrinologist as well and they get their own disease name. I just think everyone should start calling us Type Awesome and be done with it.

      Maybe it is bad, but when I hear people (especially those in the medical field) talk about diabetes like that, I end up on a 20 minute rant trying to educate them. I know its overwhelming, and a lot of people don’t want to be educated….but I can’t help it. It is so frustrating. When I go to a regular doctor who assumes I am Type 2 because of how old I was when I was diagnosed, or a nutritionist who tries to treat me like I have Type 2…whether they like it or not I’m going to tell them how it really is. I diabetes educator I recently spoke to told me that RNs receive like 4 hours of Type 1 training in their entire educations. So unless they specialize…most of them have no idea. Which is ridiculous to me since diabetics have to go to the hospital so often.

      I probably need to chill out on my preaching…but still.

      • Hah, that’s very true! I see my endo not only for diabetes, but for hypothyroid problems too. I don’t know what the disease is called in english, but hypothyroidie comes to mind in french lol. RN receive 4 hours of Type 1 training? Well, that explains why I had to teach a RN what an insulin pump was when I had kidney stones LOL

  3. Reblogged this on Dog Goes to College and commented:
    Here is a post accurately depicting some of the daily frustrations of having type one diabetes. I am actually very happy to educate people about it, but in situations like this it is really ridiculous. I have a page of Diabetes personal FAQ you can look at as well.

  4. This rings so true to me I re-blogged it. I spend a lot of time educating people about type one diabetes, particularly since I have a diabetic alert dog and she gets noticed plenty.
    I agree that there should be more of a distinction between what type one an type two diabetes are called. It confuses people. I use “Juvenile diabetes” a lot, but then people ask silly things like “shouldn’t you have outgrown it?” or “so you were a fat kid?” which means I still end up giving a speech about type one and type two and dispelling diabetes myths.

    • Thanks for the re-blogging!
      I used to call it Juvenile Diabetes as well, but then people would ask me if I was born with it, if I got diabetes at the age of 2… Then when I’d tell them I was diagnosed at the age of 24, they would get confused about the “Juvenile” part.
      It’s so frustrating on so many levels, sometimes it just doesn’t bother me, but most time, having to explain over and over again makes me tic!

  5. lovehatediabetes on said:

    Ugh. I rarely have those “good days” where I am okay with telling and educating people about the differences of type 1 and 2. It’s frustrating on so many levels it’s hard not to handle it irrationally. I’ve gotten pretty mad at pharmacists who won’t refill my prescription just because I have no refills left. All it would take is for them to call my doctor, 2 minutes. I usually don’t leave until they give the stuff to me. If they can’t understand that I LIVE off of my medicines and that it will NEVER go away, they shouldn’t be where they are. It’s not like I will never get a refill for insulin or test strips. I’m diabetic, it’s going to me until there is a cure.

    Loved this post! I hope you feel better about the situation, but I don’t blame you.

    • I would get mad at pharmacists if they would not refill my orders as well! (I was close to the point of yelling yesterday, but thought to myself, “it’s not insulin… it’s tests strips… calm down, Val…” Haha!

      Thanks for pinging back, and yes I do feel better about it today. I think yesterday was one of those days where having to explain the difference ~to a professional~ ticked me off. And I have to go back today for the test strips they didn’t have. Hah!

  6. Pingback: Wishful thinking.. « lovehatediabetes

  7. Hello Valerie Anne, and anyone else reading this debate,

    I once needed to talk to someone at the San Francisco JDRF office, and was bemoaning what you are talking about in your column, and the admin I was talking to laughed and said that they were talking about the same thing in a staff meeting the day before!

    I truly wish the two ‘diabeteses’ had different names! They are due to different processes, even though the outcome looks the same. People, and medicos who should know, don’t know the difference. It’s sad! And to make things worse, here’s another story: I had to explain to a very savvy T1 of 30 years that there actually is a reason it is called ‘sugar diabetes’. There is a rarer syndrome called diabetes millitus (Spelling?) that has to due with water/urine regulation. In Latin, “diabetes” means something like: uncontrollable urine output. Fun facts to know-and-tell 🙂

  8. P.S. I have a friend who is a veteran, and the US Veteran’s Administration only allows for 4 strips/day, regardless of what the doctor’s prescription says!

    • 4 strips a day?! I admit, some days I only test a few times, but I would not be able to truly control diabetes with only 4 strips a day! Wow!
      Thank you for the great info about diabetes millitus, and thanks for sharing your story!

  9. Christine on said:

    I Think it should have two names and people would stop saying that it will be easy if I’ve controled my diet!
    Some years ago had a huge problem with a pharmacist not wanting to give me my insulin because there were no refils!!! And she could not find my doctor on a weekend.
    It is very revolting….

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