Saturday, October 2, 2010

What's in a name?

"A rose by any other name would smell as sweet." ~Shakespeare, Romeo & Juliet

Sister agrees.

In the DOC (Diabetes Online Community) there is a fierce argument about renaming either type 1 or type 2 diabetes. There are many similarities between the two types, however it is the differences some seem to find offensive.

Briefly here is an overview of the differences:

Type 1 diabetes is caused by an overreaction of the immune system to the insulin-producing beta cells in the pancreas. The immune system is (somehow) triggered to kill the cells. Therefore, in type 1s they produce no insulin at all and must take insulin externally through multiple daily injections (MDI) or insulin pumps. Because the reasons for why the immune system does this is unknown, type 1 cannot be prevented.

Type 2 diabetes has several causes, some of which can be controlled. Genetics, which no one can control, is one component of how type 2 is developed. Other components include physical activity level, obesity, age (it is more common in older adults), and eating habits. Type 2 is an insulin deficiency (basically). One of two things is happening: there is either less insulin being produced so it's not enough or there is plenty of insulin being produced, but the cells are resistant to it (this is the simplistic explanation). There are others, of course, but these are the ones most important for this discussion.

In the DOC, there are those type 1 diabetics who feel they are unfairly judged about their illness because of confusion between the two types of diabetes. Because of this, they would like a renaming of the two diseases to bring about more obvious distinction between them. I am going to tell you my opinion and why. I encourage others to share their ideas, however just remember these are opinions - no one is right or wrong. I also don't tolerate "bashing" of any sort, so comments will be deleted if I interpret them as offensive. My blog, my rules. :o) Let's get started.

In my almost 21 years as a diabetic, I knew there were different kinds. It never occurred to me to look at some and think "they brought this on themselves - it's all their fault." In my opinion, diabetes is diabetes. When you get down to the very (very, very) basic fundamentals of what diabetes is, I see us all as the same. Diabetes is hyperglycemia (higher than normal blood glucose levels). Whether type 1, type 2, LADA, gestational, whatever we all struggle with elevated blood sugars. If we didn't, we wouldn't be diabetic. In some, their "high" blood sugars might be a 140 mg/dL fasting (no food) glucose reading. In others, like myself this morning, my fasting reading was 227 mg/dL. While individually the numbers vary greatly, it's still all the same - higher than normal.

I realize my type of diabetes could not be prevented, but I don't see those with type 2 as "asking" for diabetes. Honestly, who would ask for diabetes? While there are certain environmental factors that can be altered to prevent or at least delay the onset of type 2 diabetes, I don't blame them for developing it. Change is not easy, so simply losing weight or exercising or eating "better" isn't going to happen overnight. Sometimes, diabetes happens.

In addition, I don't get offended when someone confuses me for a type 2 diabetic. In the millions of Americans that have diabetes, 90% of them are type 2. If you assume every diabetic you meet is type 2, you will be correct 90% of the time. It seems like a safe assumption to make. I view it as an education opportunity (the teacher in me will never go away). I have the chance to enlighten someone about an illness similar to type 2, but not the same. Instead of getting angry, I just shared a little knowledge with someone. Pretty cool, right? :o)

Because 90% of diabetics are type 2, I don't feel annoyed when someone says something along the lines of "Oh, my grandma has that" or "If you exercise and eat right, won't it go away?" Again, this presents a learning opportunity. Misconceptions are abundant; it's not because of stupidity - it's simply because of a lack of education. Education. Is. Key.

I also don't believe in stereotyping. Every person you see who is overweight, can't be classified as a type 2 diabetic. I come from a large extended family - our get togethers are huge. I also come from a family where being overweight is common, however diabetes is not common in my family. I have a grandma and an uncle with type 2 - that's it. So what about those people who don't "fit the bill" for type 2 stereotypes - those young, thin, active ones? Is it really fair to lump them all together and say because they had bad genes, it's their fault they developed type 2? You can't pick your family, so you can't help your genetics.

Because I believe education is key, I'm going to educate you on a little known fact. Type 2 diabetes is a progressive illness. It can be well controlled through diet and exercise and medication, but it will never go away. Once you have it, you can't get rid of it. Just like with type 1 diabetes, there is no cure. Anyone who tells you they know someone who lost weight and ate vegetables and their diabetes went away is simply misinformed. With those lifestyle changes, that individual's diabetes is well managed, not cured. Because type 2 is progressive, eventually diet and exercise just may not be enough. Medication and/or insulin may need to be added. Insulin dependence is almost inevitable. When a type 2 is put on insulin, it's not because of a failure on their part. They may not have been able to prevent it. It's simply the nature of the disease.

So, to bring things back around, I believe diabetes is diabetes. Regardless of what type you're struggling with, we are all battling the same demon. Renaming it won't change that; you can call it whatever you want. Instead of arguing amongst ourselves or saying "my life is more difficult than yours," I vote for us all helping each other. I want us all to live together as one big diabetes family. Holding hands, singing around the campfire, and happily poking our fingers in unison. Remember the REM song, "shiny happy people holding hands..."?

Ok, so maybe that last part isn't going to happen anytime soon. But I have love in my heart for all diabetics. Your struggle is my struggle, your triumphs are mine, your pain is my pain. Together, and only together, can we get through this. 

This smile's for you.


"Our similarities bring us to a common ground; Our differences allow us to be fascinated with each other." ~ Tom Robbins

9 comments:

  1. I don't mind the questioning — "If you exercise and eat right, won't it go away?" type of question is an opportunity to educate. I agree with that.

    However, what annoys me is the ignorant statement where the person refuses to be educated. The ""If you exercise and eat right it will go away" type of statement where the person doesn't even want me to tell them how it really is for. They believe I'm making excuses. I know it's because they are ignorant about diabetes and I want to correct that ignorance but they won't hear it.

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  2. Thank you for this thoughtful piece. I appreciate it.

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  3. I think you are a completely awesome person....just saying!!! :) Rock it out for diabetes.

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  4. So, this is an old post, but you linked to it, so... :)

    I hate the whole blame-the-type-2-diabetic attitude. And similarly, I hate the I'm-so-offended-you-assumed-I'm-type-1 attitude... because that suggests that type 2 is something to be ashamed of.

    I'm also with you on not blaming people for assuming I have type 2. Statistically, their assumption is a pretty good one. HOWEVER, I do get a little irritated when people say something along the lines of, "But if you exercise, you might be able to quit taking insulin, right?" Not because it's inaccurate or because they're sort of confusing it with some type 2s being able to control things through lifestyle, but because it suggests, "You're not doing everything you could do to be healthy, are you?" That's when I feel like I and BOTH types of diabetics are being unfairly judged. After I explain, "No, my pancreas can't make insulin no matter what because type 1 is an autoimmune disease," I usually follow it up with, "But you may be thinking of treatment for type 2 diabetes. Some people can control that with lifestyle, but not all of them. There are some really fit athletes who have type 2 and still have to take medication. I know society says that people 'do it to themselves,' but the fact is that it's also genetic and some people get it no matter what."

    Anyway. As far as renaming one of the diseases, I don't care that much but often explain to people who don't understand the types that, "Type 1 diabetes and type 2 diabetes are different diseases with different causes, but they just have the same primary symptom of high blood sugar." If there's any renaming of the diseases, it should be based on scientific definitions rather than people sick of non-diabetics getting it wrong.

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  5. oops, in that first paragraph, is was supposed to say "I'm-so-offended-you-assumed-I'm-type-2," not 1. :)

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  6. Helloooooo C!

    You emailed me through Change.org about my petition. I wanted to respond to you.

    First of all, I am so glad you messaged me about the petition. The one thing that I have been telling people to do, is to read before signing. I don't want people to just blindly sign. I want to make sure it is something they WANT done. I know that not everyone feels the same way I do.

    I also love that you are able to converse about the topic and not just complain or get angry. I don't get a lot of back and forth conversation that doesn't end in arguments (especially on the internet).

    I'm glad that you wrote this blog post about it, too, because it gives me more of an inside look at the opposition. Most Type 1's are just as you've described...I tell my husband it's like a gang war...just can't decide who's the Bloods and who's the Cryps.

    I want to make sure that you understand where I stand on this, too. It isn't a Type 1 is more serious, Type 2's can change sort of thing. In fact, that's something my husband and I disagree about. He has always said he has a sort of vendetta against Type 2's because he feels like they brought it on themselves. Whereas I disagree. Type 2 runs in my family and I know that it can be a serious thing that you may not necessarily bring on yourself. And even if you may have made choices that brought it on (or brought it on sooner), that doesn't mean you're a bad person or that you chose to get diabetes.

    I am more frustrated with the overall medical education system as it pertains to those with diabetes...both types. I think that if someone has Type 2, the medical field is very quick to jump to the "well, you're not going to take care of yourself, fatty" attitude. And if someone has Type 1, they tend to push them off to specialists and other doctors.

    It kind of infuriates me that when we walk into the ER, the doctors and nurses have no idea what they're doing with a diabetic at all. Even the medical staff asks if it was brought on by weight.

    I think, and I may very well be wrong, that if there is a difference in name, people in general, but especially the medical field, won't just jump to conclusions so much. Also, by something being renamed, it is brought into view so that there is more education on it.

    Yes, I do mean to include the frustrations that Type 1's deal with when people assume their condition is brought upon themselves by their lifestyles, but that is not the main reason. I know when my husband's diabetes gets brought up and I mention it, the first thing people ask is "is he fat". Not only is that terribly rude, but it's frustrating to hear every time.

    And it isn't like people are trying to educate themselves. If I try to explain the difference, most people just tune me out, interrupt me, and insist that he can be CURED by a healthy diet.

    But mostly, I just can't stand him being in the hospital and them placing him on a medication routine (2 units of insulin every hour for example) as if it's a pill he has to take once a day. Even his own endocrinologist has said the hospital is the worst place to be for a diabetic.

    But I do not mean for this to be about one type being better or easier or harder than any other. I always tell my husband to suck it if he starts to get into it like that.

    I think I'm rambling. I didn't mean to go on for so long. I swear it makes sense in my head.

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  7. Hi C,
    I read the conversation you had on typeonenation about the whole name change.
    I kinda think the name change of both would be good. However I do see your point and that makes sense also.
    I also wanted to commend you on how you spoke to that guy on that page at typeonenation. He seems really angry but you remained calm and adult about it even when he verbally attacked you. I do hope he figures things out for himself so he can be a happier person.
    I realize some type 1s have a harder time and that goes for anyone having diabetes or a disease but there is no need to get angry and 'yell' at another person. You wrote that response very adult-like and professionally. I've been reading your blog a bit and you write very well.
    Thanks for sharing!

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  8. In a perfect world, education would be key in all matters. Unfortunately, trying to educate the general public about the difference of Type 1 & Type 2 just isn't possible in my lifetime. Every time I educate 5 people, thousands more tuning into "The Biggest Loser" are told they can cure diabetes with weight loss, never clarifying Type 2. Another book is at the library with the title 'Cure Diabetes' with no type disclosed on the cover. T.V. shows and movies - don't get me started :) The general public hears 'Diabetes' and not the 1 or the 2. Let's face it, unless you're in this club, you will not take the time to listen. The media makes blanket statements every day without any clarification of the type - even doctors on t.v. do it. Heck, even Halley Berry said she cured herself of Type 1 and weened herself off insulin - thousands of her followers now think my son should stop the pity party, take off his insulin pump, and cure it like she did. Children are especially victims of the confusion - healthy type 1 children are looked at like they're exaggerating about the severity of their disease - they should try harder to cure it by eating healthier or exercising. I've tried to look at all sides, viewing it from every angle and there's just no other way to do this than change the name. Type 1's can't even fund-raise properly with this confusion because who wants to donate to a curable disease? I wouldn't. The only way for both Type 1 and Type 2 to properly advocate for their separate causes is to end the confusion with the names.

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  9. Thanks for sharing the link to this post with me. I especially liked this line:

    "In the millions of Americans that have diabetes, 90% of them are type 2. If you assume every diabetic you meet is type 2, you will be correct 90% of the time. It seems like a safe assumption to make."

    That's a point that's easy to forget when we are surrounded by so many t1's online.

    Based on the above comments, it doesn't surprise me, but it bums me out that some people are so committed to this name change issue. I would love to see that commitment and energy put into awareness or other initiatives that would have a more positive effect.

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