An argument for kindness in the diabetes world

Type 1 and LADA
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WRITTEN BY: Lauren Salko

This is one part of a two-part series on allyship in the diabetes community. Read Bill Santos’s piece for Beyond Type 2 reflecting on finding common ground in the diabetes community.

This is what I used to tell people when asked the difference between Type 1 diabetes and Type 2 diabetes: “Type 1 diabetes is an autoimmune disease and Type 2 diabetes is caused by poor diet and lifestyle choices”.

I still cringe when I think about how inconsiderate and sophomoric my comments were. Honestly, I was afraid of the stigma attached to Type 2 diabetes and I wanted to make sure that people knew that my diabetes was not my “fault”.

Now, the way many people with Type 1 talk about those with Type 2 makes me absolutely livid. The worst part is this seems to be a growing trend in the T1D community. Growing up, my mom always told me that dimming someone else’s light would never make mine shine brighter.

I compete as an individual in professional skiing. This lesson is something that I strive to implement every day. The performance of others never has and will never have any bearing on my own success. When my teammates or friends grow and succeed, so do I. I do not need others to fail to reach my goals.

I understand that Type 1 diabetes and Type 2 diabetes are different diseases, and I’m aware that there are differences between the two. But hear me loud and clear: there is absolutely no reason for the Type 1 community to put down those living with Type 2 or to devalue their experiences as people with diabetes. I know this comes from fearing the blame people often place on those living with T2D being placed on you or your child. No matter how inaccurate it is, it still hurts when people pass judgment.

Here’s the thing: when you make negative statements about Type 2 diabetes and its causes, you aren’t helping yourself. You’re just hurting others. Dimming someone else’s light doesn’t make yours shine any brighter.

Did you know that Type 2 diabetes has a stronger link to family history and lineage than Type 1? Did you know that insulin resistance causes weight gain, which can cause even more insulin resistance? What a vicious cycle.

We also need to recognize that a lot of the advances in technology and diabetes treatments we have come to rely on are available now because of the Type 2 community. Only 5% of people with diabetes have T1D, so the Type 2 diabetes community has a lot to do with the incentives and direction driving diabetes innovation.

The next time someone asks you about the difference between Type 1 and Type 2 diabetes, I hope you take the opportunity to educate! Don’t just take the easy way out and make negative (and often times incorrect) comments about Type 2 diabetes. Be the biggest ally you can for EVERYONE living with diabetes by standing up for all of us in the face of ignorance.

Diabetes is rough, no matter what kind you have, so have some compassion for your brothers and sisters who also deal with high and low blood sugars, counting carbs, taking medication, insurance fights, and fearing complications. Kindness will get us further than stigma and othering ever will.

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applause

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I agree!

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Thank you for posting this. I’m a T2 who was diagnosed when I was quite thin, and even losing more weight, exercising and watching my diet did not control it. I’ve been on insulin now for 35 years and on a pump for 18 years.

My best friend just got diagnosed last year…she’s always been painfully thin, and still has T2.

In both our cases, we have a strong family history of T2.

Interestingly, though, it seems that more elderly people blame their peers for having diabetes, rather than blaming “young” people whom they seem to assume “didn’t cause it themselves.”

The other phrasing that annoys me no end is: “oh, you’re on a pump. You must have the bad kind of diabetes.” Like there’s any good kind, lol.

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Totally agree @Ruth4.

Your body doesn’t care which variety of diabetes you have, All require managing BG’s, dealing with highs and lows, and ultimately, the risk of significant diabetic complications later in life.

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@Ruth4 I just read a research study that of Type 2’s “Only 6% of patients (n = 15) had an insufficient beta cell reserve.” I have to wonder if you ever had the tests for type 1? Needing insulin early is a sign of type 1. It is guessed about 10% of type 2’s are not overweight.

Since 40% of type 1’s are misdiagnosed as type 2’s at first, sometimes for long lengths of time like I was, I like to make sure everyone is made aware, just in case.

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I don’t know if the antibody tests were done when I was diagnosed in 1984. I had them done myself when I went on medicare, and they were negative. My C-peptide test does qualify me for a pump, but I’m still categorized as a T2, which means I don’t qualify for a CGM on medicare. But since I don’t really want or need a CGM anyway, it’s not a problem.

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My husband’s last A1c was 6. He is quite thin and no one in his family had diabetes. His A1c’s started rising when he started taking statins several years ago.

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Hi Ruth:

This statement is not true. You may not qualify for a CGM on Medicare for another reason but being T2 is certainly not one of them. Here are the Medicare requirements for a Dexcom CGM:

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Yes, we all need more kindness, and this “argument” is very powerful. I will disagree with one statement–Type 1 is not 5% of all diabetes. A huge number of people with Type 1 diabetes are misdiagnosed as having Type 2 diabetes, simply because they are adults. In fact, study after study (with the first published in 1977) show that ~10% of people diagnosed with “Type 2” diabetes are autoantibody positive, have Type 1 diabetes, and have been misdiagnosed. So Type 1 is way more than 5%!

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@CJ114 I wonder if that’s a recent change. I know they didn’t cover cgm’s for T2’s for a while.

Anyway, as it happens, I really don’t want a CGM. My A1c’s for the past year have been steady at 5.8, with not many lows and none below the 50’s. I did have one A1c at 5.6, but I was having a lot of serious lows, so I tweaked my basal rate a bit and that took care of it. For the past three months, the most serious low I’ve had has been 58 to somewhere in the 60’s, and not more than maybe once or twice a week. I can live with that.

I’ve also got an adhesive allergy, so I have to use barrier tape which is a pain getting medicare to pay for. I definitely do not want another site to stick on my body, lol.

But I am glad to hear the Medicare now does cover cgm’s for T2’s…so stupid for them not to, right?

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This mindset was very prevalent back in the early 70’s. My parents attending parent support groups had many parents say things like this to offset those discussions people would have about ways to cure their kids. But wow, it turned ugly.
Over the years, talking with many fellow PWD both 1 & 2, I believe that type 2 is so much harder. Most everyone I talk with has multiple problems. Every organ system is in the mix, which leads to the many different drugs and treatment plans. I just don’t think handling all that is easy, along with the blame and shame everyone, medical professionals also, heap on people with type 2. Who can do all that, plus lose weight when everything is stacked against you. No one can control their family history. There is nothing you can do about that. If the genes are there, they are there. Even if a person loses the weight, that doesn’t mean they won’t get diabetes. Type 2 is such a complicated disease. There is no easy fix.
And while we all want a cure, I think type 1 will be cured long before type 2. There is just way too much going on with type 2.
So I think all of us being helpful and supportive is the way to go. It’s the way everyone should be with everyone. Just think how much nicer the world could be. And in regards to diabetes, just think of the numbers. We are a bigger force to deal with.

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Yes, it was not until early to Mid 2017 that that Medicare started covering CGM for T2 patients, at which time I got on the Dexcom G5 and it has given me the necessary data to remain in the same ranges as a non-diabetic. The system is not perfect, but still totally awesome for anyone that wants to put the effort into learning how to use it properly.

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Just want to point out that not all Type 2’s are diabetic because of insulin resistence. My C-peptide test was low enough to qualify for pump under Medicare but my insulin resistence score is normal. But I don’t have the beta cell thing. For awhile, after having used a pump for many years, I was afraid that once on Medicare, I wouldn’t be able to get another pump (necessary because Animas went belly-up…tears :cry:).

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Sounds like you might be T1/LADA. Have you ever had C-Peptide and antibodies checked?

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I had tests done when I hit 65 and needed to get my pump approved by Medicare. All the antibody tests were negative. I had the C-peptide done twice. The first time, my blood sugar was high, and the C-peptide was too high to qualify me, but I had it redone with a much lower fasting bg and my C-peptide was low enough to qualify.

T2 definitely runs in my family, so I’m not surprised I didn’t have antibodies. Plus, I absolutely NEVER get ketones, no matter how high my bg gets. When I was going through chemo 10 years ago, and I needed to take megadoses of steroids the night before treatment, my bg’s in the morning were over 1,000, with not even a trace of ketones. Also, apparently, explains why it’s so hard for me to lose weight!

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@Sally7
No way is it easier to be a type 1 than a type 2. Not having insulin means death to a type 1 and everything that goes with it, exercise, stress, foods, etc. It’s much more of a all day thing.

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My impression of the differences are that you can’t compare Type 1 and Type 2. They are just too different.

Type 1 seems to be a lot more volatile. Wider swings in BG. Excessive lows, faster stomach emptying. Our bodies can get used to lows and, without close monitoring, go REALLY low to the point we can do nothing for ourselves. I have been walking around talking in my 20s (before I had a CGM), then suddenly I feel it.

What I am not clear about is the WHY. I think that most of it is using insulin. Insulin is powerful stuff and it is quite easy to suddenly have too much.

I also think that what makes Type 2 difficult is that it is easier to be in denial about it. It’s pretty ominous when you find yourself injecting from day 1. You can’t (though some have) blow off needing to inject.

(The interesting thing about LADA is that some convince themselves that if they eat really low-carb that they can eliminate fast-acting insulin. You may not need fast-acting until you are coming out of your honeymoon, but in my ten years I have only come across one Type 1 whose honeymoon lasted more than a year or two. Beta cell death comes to us all as Type 1s. You are going to need basal and bolus insulin. You just are).

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I really don’t think either type is “easier”. No chronic disease needing 24/7 maintenance is easy. But I will say as a person with type 1, I can handle my blood sugar swings much easier than someone who takes a pill or uses diet & exercise to manage their blood sugar. It is much easier for me to take a correction bolus to fix a high versus someone who takes a pill. So much harder to correct those highs. And sure walking around the block can help bring down a high but sometimes when a person gets that high, exercise is not always the best solution.
I am not saying either is better. I am just saying with type 2 there are so many other issues that pay into the disease. High blood pressure, high blood fats, weight that is a cause or the result of type 2. So much going on here. Type 1 is a lack of insulin. (Yes there is also a lot going on with other hormones being produced that might play a bigger impact than we think. It might not just be insulin alone).
As a child I always felt it was so unfair that I didn’t ask for this disease. The reality is none of us asked for it. No one has any control over our family history. But as a child, I really didn’t understand. As an adult I realize, things are much more complicated. And whether a person has type 1 or type 2, a little understanding as to where the person is, where they were and where they are going can help us better understand and help.
Is either type “easy”? Nope! Is either type better? Nope!
But i will say, I believe I have it a little easier because my tool chest makes it much easier to addresss those highs and lows that happen in my day to day life. Again, my opinion here, not fact. I feel for those of my fellow PWD who must deal with high blood sugars and only have exercise as the only option to try and bring it down.

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The argument of which is worse cannot be answered in my opinion, there is the worst and best in both types. There are T1’s that appear to be able to control their BG with relative ease, although I have to say that is an illusion, and there are some T1 that can never seem to gain good control no matter how they try.

Same with T2, some people make it look easy but others can never, even with great effort, achieve their goals.

If difficulty in achieving good blood glucose control is the standard by which we judge difficulty we will never be able to decide because in all forms diabetes has the ability to defeat us without extreme effort on our parts and every day there are people of both types that lose the battle.

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