Is this battle worth such a great loss?

Okay. I’ve waited a while to put my 2-cents in on this topic. People are being so rude and mean about it that it’s hard not to let it get to you and make your head explode or just want to have a breakdown and cry.

diabetesbluecircle

Some parents are wanting to change the name of Type 1 Diabetes because they don’t like how misleading headlines say that you can cure diabetes lead to conversations from random people and hurtful comments from innocent-ignorant-to-the-truth people lead people to believe that all diabetes is caused by sugar and weight and all that mess. But you know what? Neither is Type 2.

More and more studies are showing that Type 2 may also be an autoimmune disease, just a different form. So what is your basis now? And don’t you think it’s being slightly hurtful to those who are type 2? I have plenty of friends who are type 2, many whom I have met and have not met yet I love to death as if they were my own brothers and sisters. At the end of the day, we all prick our fingers, check our sugars, monitor insulin levels, and supplement as needed. We all have to watch food calorie and carb intake, and exercise to maintain the best health as possible.

And yes, they are both very different as that weight can be a contributing factor, but not always. There are many, many stories – one lady of whom was a commenter on a much older post who said she was diagnosed while being fit as a fiddle and training for a triathlon  – of people who are otherwise in great health, in perfect weight range, and are active that “get” Type 2.

If you’re so against the names being similar, what do you propose for a name that would both unite and discern between the two? Since they are so similar yet so different? You can’t simply state that you/they have Autoimmune Diabetes because that still can refer to either type. And Juvenile-Onset Diabtetes (JOD) is out the door because Type 1 can be diagnosed at anytime. Beta-Cell Destructive Diabetes? BCDD? Nope, because over time, the beta cells of the pancreas stop working in Type 2.

And what is it really doing to matter? People who see you or your child pricking their finger are immediately going to know it’s because you/they have diabetes and that’s where their assumptions are going to start. I get it. I do. The hurt from others who assume that you did this to yourself or to your child because of what the media teaches them is awful. It’s painful. I’ve dealt with it my whole life. But I can tell you, it’s not going to change someone’s perception one iota because they’re still going to ask if you/they can/can’t eat that or if you/they lost weight would it go away. My husband’s friend is a physical therapist and has known I have diabetes since she met me and still asks me if I “can eat that”. It hurts. But telling her I have (insert new name here) verses Type 2 isn’t going to matter in the end.
Last time I checked, we all proudly showed the Blue Circle everywhere. It is a symbol of unity. We all work together each November, especially on the 14th – Dr. Banding’s birthday (the co-founder of insulin.. you know…that stuff that keeps both type 1s, type 1.5’s, type 2’s, and some gestational diabetics alive). We wear blue on Fridays and post our pictures in support for others. We “unite for diabetes awareness”. We need to be building each other up. We’re all blood-relatives in that sense. Why would you want to run your brothers and sisters into the ground and treat them just as you have been treated? Or worse (as I’ve seen some act)? If it goes through, there will be so many wonderful, loving people lost in what we call a great supportive online community. Is it worth that?

Stop the fighting. Stop the division. It’s not the right answer.

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8 Comments

Filed under dblog, Diabetes

8 responses to “Is this battle worth such a great loss?

  1. I am a parent of two kids with Type 1. I don’t want the name change. I haven’t finished my 2 cents regarding it yet on my blog. Ok – I haven’t even started typing it – its all in my head. It is something I write while cleaning, driving, walking. Im sure strangers see me having a conversation with myself and shaking my head and think Im nuts.
    Changing the name will not solve anything and honestly will lead to more confusion, anger, frustration, and even division. I have spent the last year in the DOC and I consider all of us united – regardless of the type. The name is not the enemy – diabetes is the enemy and I’d rather fight one battle united with my allies than fight a red haring (PNC) against brothers/sisters.

  2. hannah

    the way someone else put it is there’s also an autoimmune component to gluten intolerance that doesn’t make it coeliac. i’m not bothered what the name is but do like the autoimmune diabetes just in general

  3. Great post!

    I haven’t voiced an opinion on this topic exactly because of the viciousness I’ve seen about it. I personally don’t think changing the names will change anything. The perceptions aren’t going away and people still don’t know the current names anyway.

    I’d rather the effort on both sides of this be redirected toward more fruitful endeavors.. like better treatment and education.

  4. Thank you for this compassionate post. I’ve only been diagnosed since 2006, only active in my management for about 2 or 3 years, and only found the “community” since I decided to start pumping. I went into the community expecting empathy and found that I often got much discrimination and assumptions and blame. Sometimes even hatred. I have had to learn to not expect more from my fellow diabetics. To not expect more empathy or compassion just because they struggle, too, or at least to be more informed than the “health guru” that has a vested interest in making people think their diet plan is going to cure them. The diabetic community has shown me they are just like all other sub-groups and just as prone to bias and judgement as any other. It’s been a disappointing and hurtful lesson.

    But I wouldn’t be telling the whole story if I left out the wonderful people who see past the stereotypes and let compassion lead them. People who have seen and acknowledged the plethora of folks who don’t fit the stereotypes, and read some of the newer research about genetic involvement, and realize there is still so much to know about the disease regardless of how it’s manifesting in individuals. Those people are happy to share their journey and happy to be involved in my journey.

    Those people have made the risk of reaching out worth it, but I’m generally a bit of an old battle axe. I often wonder how many people who are too fragile to deal with the judgement get left behind.

  5. Holly Ferry

    Thank you. This is exactly what I’ve been saying FOREVER! We certainly don’t need more labels!

  6. Thank you for an honest post Sarah.

    We do not know the cause of either condition. Let me repeat that: we do not know the cause of either type 1 or type 2 diabetes. Yes we know there is an autoimmune response in type 1, but we do not know the triggers. We know very little about why type 2’s beta cells die off.

    The pathway is still open for sugar to be the cause of both. Let me explain. As sugar consumption has risen, so has obesity and type 2 diabetes. So has heart disease, Alzheimers, MS, mental illness, all cancers, and the whole suite of so called western diseases. As Gary Taubes asserts, Occam’s Razor suggests they all have the same root cause. My money is on our standard American diet (SAD). Whether it’s as a baby, a teenager, an adult, whether it’s called type 1, type 2, or type 1.5 hardly matters. We all die younger than we should of complications, we all live with constant threats of hypoglycemia, and we all obsess about diet and medication.

    When you get right down to it, we blame type 2 diabetes on patients, and that’s what type 1’s get upset about. Type 2’s are guilty of self-abuse while type 1’s are completely innocent. How can you blame a baby for eating poorly? So they want a name change. Bullfeathers.

    This western disease epidemic is not due to personal choice. It’s due to food policy. We opened the doors to a great influx of crap so we can feed the population cheaply. It goes ast least as far back as Nixon who wanted food availability and affordability off of the election tickets. It was something the greatest nation on earth shouldn’t have to think about. Well too bad it didn’t think about it more; because now look what we have, a sick population.

    If you are really upset about the situation, then help fight against these stupid food guidelines we’ve implimented that are killing us. Help us wipe out the mass production of wheat, sugar, and other starches. Help us spread the word that sugar really does kill, not fat, not cholesterol, not animal products. There is not one shred of demonstrable science supporting our attack on fats. None! There is a load of evidence against sugar. Get your minds off off of this poinless target. Lose your egos. Focus on rebuilding our natural relationship with food.

    *end of rant*

  7. I think instead of trying to change the name we should focus our energy on the media, who are the ones who constantly trumpet “obesity” “sugary soft drinks” “video game addiction” etc. as causing diabetes. Get them to wake up and attempt to report accurately about all types of diabetes and the actual causes.

  8. Matt K.

    Booyeah!!! I WHOLEHEARTEDLY AGREE!!!

    To quote Shakespeare:

    Juliet:
    “What’s in a name? That which we call a rose
    By any other name would smell as sweet.”
    Romeo and Juliet (II, ii, 1-2)

    The problem is DEFINITELY misconceptions…

    I struggle frequently with a conspiracy theorist friend of mine (dedicated member of the proverbial “foil-hat” community) who is convinced that “Big Pharma” is *CAUSING* illnesses like diabetes just to profit off of us… They constantly send me e-mails with links to the websites of people claiming to have the cure for diabetes, & claiming that the cure isn’t “in the wild” (commonly used, that is) because of “Big Pharma” suppression…

    I’m sure that when you look into it, these cases of “cured” diabetes are nothing more than people who have historically had issues understanding their diabetes treatment, and finally been taught to to treat themselves effectively in terms they *ACTUALLY* understand. Then when they’re successfully treating themselves, they’re told that “It’s (usually “it” is their A1C or BG numbers) like you’re no longer diabetic.” and they misinterpret the results by modifying the statement by omitting the “It’s like” part of the statement…

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