What I wish gluco-normals understood about diabetes

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With the recent headline news about a cure for diabetes, I’m sure this community will now be faced with excited family, friends and acquaintances delivering to us the great news of an imminent cure. For those of us who’ve been dealing with T1 and T2 diabetes for decades, we’ve been through this many times.

This story trades on the regrettable ignorance and short attention span of our society. Many people never read beyond the headlines. I just replied to a top post on a heavily-trafficked political website about this “cure.” I was the 66th comment and the first to point out this was a story about a diabetes cure in mice!

We struggle with the ignorance of society about diabetes. In order to protect our mental health, we’ve built up an emotional defense to the consequences of this ignorance. I’ve long ago accepted that this social ignorance is simply a consequence of human nature. People pay the most attention to the things that directly affect them. Learning the details of other people’s struggles is not as engaging.

I’m as guilty of this as my fellow humans. For instance, I don’t know much about muscular dystrophy. My primary focus on things medical is on T1D, a disease with an immediate and long-lasting personal effect.

If I could teach gluco-normals just one thing about diabetes, I would need to select it from a long list.

  • T1D is not T2D!

  • When media uses the word, diabetes, it really means T2D.

  • When headline writers uses the word cure in the context of diabetes, it almost always is a disingenuous and misleading tactic to reach more eyeballs.

  • Studies that report a T1D cure in mice are common and has yet, not even once, translated to a cure for T1D.

  • T1D is not juvenile diabetes, adult diagnosis is just as common as childhood diagnosis.

  • As a T1D, I cannot reverse my diabetes simply by losing weight.

  • For a T1D, insulin is rarely optional.

Well, I could continue this list, but you get the idea.

If I could instantly teach the public just one thing about diabetes, it would be this:

T1D is not T2D!

What would you choose to enlighten the public with about diabetes? My list is nowhere near comprehensive. Feel free to draw from your own experience.

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There are so many things that I wish the general public understood about diabetes. But, if I have to choose one (or two)I think that I would go with your top two bullets:

It would help a lot if T1D and T2D had different names. I have been told in the past that I must have it “bad” since I have to take insulin. To one of your points, they don’t understand that insulin is not optional for T1D.

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I’d rather not stir up the naming issue in this thread. I understand your rationale and do agree, but it’s complicated by the small number of T1Ds versus T2Ds as a basis for research funding and other political circumstances. Grassroots education about T1D as autoimmune and T2D as insulin resistance seems a better expenditure in resources.

As far as the “bad” type of diabetes, while I think that T1D requires more continuous attention, the comorbidities and mortality rates seem similar to me. T2D is much less demanding during the often long-undiagnosed period while it insidiously exacts long-term damage.

Couple that with a medical practitioner and societal lack of urgency regarding treatment causes many with T2D to feel any pressing need for effective treatment. “Just take your pills and move on with life” is a dangerous attitude that many settle into.

T1D, by contrast, demands your immediate attention and treatment. Ignore T1D and you will soon reach your expiration date! I’d rather live with T1D as it seems less complicated than T2D. I wouldn’t argue either type as better than the other.

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This may end up complicating matters though, in that many T1Ds are insulin resistant and take T2D medications to treat it.

Autoimmunity is conclusive for T1D, however many T2Ds are insulin deficient/absent and require insulin to sustain life.

I’m not sure which one statement I would select/promote; I’ll think on it!

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@Terry4, As a person with diabetes (type not relevent), and former EMT / Paramedic,
my BEEF with diabetics in general is this cloak and dagger mentality of hiding pumps, CGMs, etc. The failure to wear medic alert bracelets or other obvious medical IDs. The failure to inform coworkers, classmates, even family.

This cloak and dagger mentality causes needless delays in focused emergency medical and direct medical care.

STOP HIDDING.

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@Jay6 Maybe it’s because I’m lucky enough to not be “brittle” - in other words, I have always been able to take care of blood sugar irregularities without help from others - but I have never felt compelled to advertise my T1D. I will always tell my boss, and close friends, and family, but there is also the danger of discrimination. Illegal or not, it happens. This is evidenced by the fact that after I was hired at one of my previous jobs, I told my boss. The look on her face said clearly “If I had known that, I would not have hired you.”

I don’t go out of my way to hide it. I wear my pump in my pocket, and it’s visible for anyone who looks for it. But I do not want to have to introduce myself to people by saying “Hi, my name is Brianna, and I’m diabetic.”

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I guess I wish that there was more understanding about the experience of maintaining illness & health, in general. I don’t think our society has as much dialog about the experience of illness that is so fundamental to the human experience.

Normals understand so little that when it hits them (and it will), they are unprepared. But, people across many illness groups provide me with a lot of perspective about my own experience.

I think that the experience of communities like ours are much more relevant to all people than is realized…especially now, when everyone, everywhere is suddenly and unexpectantly bombarded a situation for which, I think, we have relevant perspective that might be helpful to them.

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Understand. I don’t expect the general public to understand this level of detail about diabetes. The question I ask is what higher level fact would you like the public to grasp about diabetes. Knowledge that there exists different types with basic material differences is important to me.

My list in the post was not intended to be comprehensive. If there is any other aspect of diabetes that you wish the public would understand, please comment.

It’s hard for me to identify with this as, from day one, I was always an open book about my diabetes, even in the workplace. I was lucky in that regard since I worked in a union environment and never had to worry about my job security with respect to diabetes.

But I found, even freely sharing how I treated my diabetes with coworkers and friends, they had a hard time retaining what I told them many times over many years. I would be surprised when, after many years and conversations, I would get a question like this, “If you pass out, does that mean you need insulin?”

I do know that many people with diabetes hide their condition and that can end up with both positive and negative effects. See @Brianna1’s all too common perception of workplace discrimination, often fueled by ignorance.

I agree, however, that making diabetes apparent to emergency staff is a good thing, providing that they understand the difference between T1D and T2D.

Far too many medical practitioners, including doctors and nurses don’t quite get the distinction between the two types. I learned this from the sincere questions from medicos when undergoing medical procedures and during office visits. I’ve been asked by medical staff when I inform them that I live with type 1 diabetes and they follow-up with, “Do you take insulin?” I am most surprised when I detect ignorance from an endocrinologist.

I do think for those of us who are curious and value continuous learning, much of what we learn can be applied to other health challenges that we face.

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@Terry4:

A good start would be the combination of your first two points. If even the media could understand that T1D != T2D. While you are correct, and we know that when the media says diabetes they actually mean T2D … I FEAR that the media DOESN’T know that T1D is not the same at T2D.

@Jay6:

You make a very good point. While I have worn a Medic Alert bracelet for the last 48 years … and have the old, worn out ones to prove it, and I learned to be more diligent about telling folks who needed to know … I’m confident that many 9-1-1 and EMT calls ARE for diabetic emergencies. In your experience, do you have an estimate of the percentage of calls that were either directly related to diabetes or that knowing someone was either T1 or T2 would have made a significant difference in your treatment and/or approach?

Stay safe all!

John

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There needs to be a more distinguished separation between T1 and T2. I’m for the renaming myself. I just wrote on another thread some of the problems it now causes. A doctor telling a T1 recently that squash has too much sugar for her to eat. A chiro who had been a neonatal nurse before becoming a chiro telling me a couple of years ago that since I didn’t get it as a kid I could cure it. And 10 years ago a GP telling me medications wouldn’t have worked on me at all if I was a type 1.

Some of the newly diagnosed end up being very confused about what type they have and what it means. The newly diagnosed type 1 asking if they eat right can they get off of insulin, the type 2 that has really high levels and put on insulin right away to bring down their levels and thinks they have to be on insulin the rest of their life or worse they don’t have to change anything because insulin solves the issue. The fact that some type 2’s take insulin just helps mix and blend the two together.

I really feel the blending and mixing of the two types is compromising care and the ability it seems like for type 1’s to have access to what their type actually means in treatment, in diet, and that trickles down to accessing the tools that can help us.

And then there’s diabetes insipidus, this one is because the origin of latin diabetes definition is “passing through, a large discharge of urine” and diabetes insipidus is a disease that has nothing to do with the pancreas or blood sugar but it happens when the kidneys produce a lot of extra pee. Imagine the confusion that happened on a diabetic dog site when someone new popped up and asked how much insulin their dog should be on and their dog had diabetes insipidus. Very few caught the problem with that.

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I cannot convince some people even in my family that I have T1D, and not T2 because I was diagnosed at 29.

This has led to me being extremely anxious when anyone asks me when I was diagnosed (which I actually find incredibly rude—would you ask someone this of another disease?) and sometimes I’ve even lied about being younger because I don’t want to feel badly when they “tell” me it’s impossible or that their friend has the “worse” kind because he was a baby or some other annoying falsity.

I hate the self blame that some attribute to T2 (wrong!! factually and morally) and I hate that some people extend that blame me when they say I can’t have T1 because it’s “juvenile”.

Grrrrrrrrrr!

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@jenni_bean – It’s difficult to argue with ignorance, if people cling to that ignorance and will not accept any facts that are new to them.

I was diagnosed at the age of 30 so my case is similar to yours. The era of calling T1D juvenile diabetes is over yet still colors many people’s understanding of this disease. An inability for people to update their knowledge in the presence of new information is a problem. I think the emotion part of the brain over-rules the fact part of the brain every time. Perhaps people’s fear is what drives their inability to adjust to new information.

In any case, you still need to deal with this. You and your doctor know what type of diabetes you live with. As long as you base your treatments on this reality, you can thrive.

The more difficult problem you face is that your social circle does not support your everyday efforts. Perhaps you could seek some counseling that would help you deal with this. Maybe a session or two of talk therapy could give you the words you need to help your social contacts to understand you more clearly.

By the way, have you had any antibody or c-peptide blood tests? These can definitively diagnose T1D.

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I’m not sure if I’ve ever had those tests, but my doctor, Endo and ER doctors (I’ve unfortunately had DKA like 6 times?) have even told my family this was not her fault and she has T1D.

I have had counselling, but actually never talked about this. It’s just something I figured I’d always face being irritated by, but I know it doesn’t really matter what others think.

Thanks for the reply:)

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There’s a lot of peace that finally comes with realizing that you can’t fix stupid. And no, I have no moral qualms calling it that. I don’t mind taking a teaching moment to cure ignorance, but those who are too attached to their own misinformation to learn, I will lump with the stupid. Think of it like any other handicap, and their comments become a little easier to swallow and ignore.

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When I was on the streets, there were not that many EMS calls that were diabetic related. Knowing thru bystander reports a person was diabetic made IV dextrose a good start for the unconscious person. I need to say, I started on the streets before finger sticks were available anywhere… Early 1970s.

The largest percentage of calls were either cardiac, vehicular crashes, or stupidity (DIY, young dare devils, risk taking, etc).

Hope this helps.

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Mice lie and monkeys exaggerate.

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I always say I just really wish I had Type Mouse Diabetes—that’s clearly the “good” kind, if there is any.

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I’ll add to what Jay6 replied, as a younger diabetic and ex-EMT. I would say that the primary influence of diabetes on protocol (especially now) is that almost EVERYONE gets a blood sugar reading when I work . But, when other people work, certainly EVERYONE who is drunk or has any kind of altered level of consciousness SHOULD get a BG. But, they do not always.

I think that what is important to recognize is that cops are (generally) 1st responders (1 license step below EMTs) and they don’t check BG. Although they might be ‘varianced’ to do this in some jurisdictions. That will be determined by your local Medical Director (who is the King Doctor for your areas local Emergency Medical System). The thing about cops is that there is a difference in perspective. Police will almost always assume that you are drunk or on drugs. But, if you are out cold, police (or anyone) can check med tags. Med tags help. When I worked with other EMTS, I was a HUGE proponent for med tags. If people don’t check med tags, then we have a discussion.

If your medics can physically see that you are a diabetic, there is a greater chance that they take control of the scene (as opposed to the police). We want the medics in control, not the cops because cops will take you to jail and assume drunk/drug use every time. Med tags help you advocate for your medics so that they can advocate for you. When cops and EMTs disagree, cops often win (although that is NOT how it is supposed to work - they are both peace officers).

“A law passed in 2015 has cleared the way for more first responders to check patients’ blood glucose levels . Previously, only advanced emergency medical technicians and paramedics were allowed to conduct the simple finger sticks that can indicate a patient may be diabetic” (Indiana State Law - https://www.in.gov/dhs/files/HR_Jan_16.pdf).

Here’s some stats that cite 2% of all EMS calls are attributable to diabetic symptoms.

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“Primary Impression” means that they look at you and can tell your in diabetic shock - not that they have checked BG. Primary impression can dictate who takes primary control over the event - the police or the medics. EMTs can argue & disagree about primary impression. Police and EMTs can disagree over primary impression. You want to help them get this right. If they see med tags, that really helps them make their case that this is indeed a ‘medical event,’ not a call for a drunk.

EMTs and paramedics will not treat hyperglycemia. They treat hypoglycemia. Knowing that someone has a common chronic illness is very important and helps dictate treatment. There are many, many circumstances that cause someone to pass out. Med tags help direct them to the most likely cause of the problem very quickly and are very helpful because sometimes people have more than one problem at the same time.

Compare the % of diabetic calls that medics get (2%) to the % of calls that the police get for someone who is intoxicated (36%). That is why police always believe that we are drunk…because everyone (over 1/3 of people that) they deal with are drunk. That tells you why diabetes is dangerous ground - also sometimes diabetics have low BG AND they are drunk. People get confused, get it wrong, and are very biased towards assuming that we are drunk. That is very dangerous for us. But, it is also very dangerous for people with other conditions, too. The police may assume that they are on drugs if their behavior isn’t normal.

Medical calls are hard (much harder than traumatic injury). I assume that every call is a medical call until proven otherwise. But, that’s because I have medical problems. Most people don’t do this. Medical calls are difficult for people.

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Great comment, @mohe0001!

This definitely fills in some blanks spots in my understanding of what’s going on with first responders. I really want the EMT to make that critical conclusion of first impressions. As an ex-EMT, do you think an insulin pump attached to a waist belt and externally visible is an obvious enough indicator of diabetes for first responders? There shouldn’t be any confusion with 1980’s style pagers!

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@Terry4 I don’t think they would necessarily recognize it as a pump. I was talking to two newly trained police and and showing them my Dexcom CGM so they could maybe recognize it. I mentioned sometimes Type 1’s get mistaken for being drunk instead of low blood sugar. And they knew that. They were eager to see it. I still run across medical staff that don’t know what it is. I remember showing the pharmacist the Dexcom, they said they got a video to watch but had never actually seen one.

Lol…I am one of those if that is constantly asking if people have seen a Dexcom and show them mine and how it works (it is on my arm). I also am constantly showing people the Libre on my dog. Although that is more for the fact that people know that they can be used on a dog, since so many dogs end up with diabetes.

But why would police recognize a pump even less seen or used? Or even EMT’s? Unless it’s shrieking or something so that then they try to figure out what it is and why? I’m not medical personal, but I wouldn’t recognize different pumps? Except for an Omnipod which I wear.

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