I wonder sometimes when people talk about “true Type 1” if they’re not talking more about “culture” and experiences rather than they are of the physical disease. Diabetes has a huge effect on childhood experiences and, for me, I really relate to other people who have had similar experiences, much more than I relate to people who were older than I am right now when they were diagnosed. And, as someone pointed out above, there is a massive difference in terms of complications and risk factors. I’m turning 30 this year and already have 20 years of living with diabetes behind me. This means that as a 30-year-old I’m having to think seriously about possible complications. At 20 years, I also have much more diabetes experience than many of the LADAs on this site. I think there is also an age gap issue here, too, because many of the “classic” Type 1s on these online forums seem to be in their 20s and 30s, while many of the LADAs seem to be in their 50s and 60s.
I have heard a few Type 1s diagnosed as kids or teenagers say they feel like people diagnosed in their 30s, 40s, or later have somehow “cheated” because they got to “skip” so many years of diabetes. I don’t think they mean it in a way that the older people don’t have “real” diabetes because they were diagnosed later, but just that experience-wise and complications-wise, it’s a very different experience.
I think all these differences can definitely create a bit of inability to relate! Especially if, say, a 20-year-old who has 15 years of diabetes experience comes onto a board to vent about their blood sugars and is given advice from a 55-year-old who has 3 years of diabetes experience.
All of this doesn’t make one kind of diabetes more valid or “true” than another, but I think it can be useful to keep in mind, especially because online you can’t always tell the age of the person you’re interacting with. I think this issue is probably worse online than if we were all sitting around talking in person, because people tend to say things online they wouldn’t say when talking to someone face-to-face.
I think you may have told me that before? It sounds familiar? I would think that the outcome would be similar. It would probably also help if T2 wasn’t always treated with insulin as a “last resort” when the BG falls off the wagon and “medium bad” BGs are “tolerated” in some of the reports people have made a lot more than the more crazy (cough cough) T1 people would?
I’m 63, and I’ve had diabetes about 20 years, and I’m extremely grateful that I didn’t have to go through it as a child and adolescent. So I listen to stories of people who did, and I do my best to give them as much support as I can muster, but no, I can’t say “me, too”, because it isn’t true. But I CAN say, “gee, that must have been tough!” or ask “how did you handle that?” I’ve learned the concept of emotional honesty from my psychologist, and the truth is we all live our own unique lives, but that doesn’t mean we can’t listen non-judgmentally, and be there for someone. And I’ve learned that it’s always possible to ask a question, and help the person explore their feelings, even if you never went through the same experience yourself. And by doing that, you just might learn something.
Learning to relate is a tough job, and many people haven’t mastered it (I’m not so perfect at it, either!) but I think it’s a worthwhile goal, and one that we, as human beings, can do if we think about it and make the effort.
I totally agree with what you say—I was just speculating as to why this is so much of an issue among the diabetes community in general.
It kind of reminds me of the blindness community where there are ongoing debates about whether people with low vision should be allowed to call themselves “blind” or if they are somehow faking, about whether people with low vision should use “blindness” tools such as braille or a white cane, about whether those with no vision have it worse than those with low vision, about whether it’s harder to be born blind or go blind later in life, whether it’s worse to go blind slowly or suddenly … It’s not quite as prevalent in that community as it is in this one, but I find it amusing sometimes how both communities have such similar debates about such different issues!
We should save our ammunition for the people on the other side of the barbed wire, doctors and insurance companies, regulatory agencies and governments.
Zoe… I did not get , that was implied " what’s true/works for me must be true/work for you".
…I read several times : this works for me …end sentence …anyway , enough said by me .
I find this kind of ageism somewhat unfortunate. I also don’t think knowledge is measured by numbers of years. There are some people diagnosed as children, with 30 years experience who operate on very outdated protocols and wouldn’t know an I:C ratio if it hit them in the head. There are also 20 somethings who are rebelling against parental control and have A1C’s of 9 or 10. I would like to think that I as a 62 year old diagnosed 4 years ago and a 33 year old with 25 years of diabetes under their belt each have our individual strengths both as people and as diabetics that we can share with each other.
I think the whole rebelling from parental control thing may be exactly why some teens and 20-somethings might not accept advice from an older person, no matter how good the advice is … I also think those of us diagnosed at young ages sometimes have trouble adjusting to new therapies because the “old ways” get so ingrained in us that when we’re told we have to do something different (do six shots a day instead of two, eat low-carb instead of eating no sugar, use a pump and CGM instead of syringes and four tests a day), it’s almost as hard for us as it is for a newly diagnosed Type 2 who’s told they suddenly need to fundamentally change the way they think and live.
It’s interesting, because I can’t think of very many online forums that attract people ranging in age from teenagers to seniors, which is why I’m guess that age may be a factor in all this (again, I’m no sociologist so could be wrong!). Most other online forums I know of are for things like video games or TV shows or hobbies that are probably more limited in the age range of people who go there (plus probably not as emotional as diabetes can get).
Anyhow, I hope I’m not offending anyone with my thinking here! These statements aren’t the way I think but are just my ideas about why there’s such a big issue between kids versus adults and diabetes.
I would think that knowledge would be measured my the number of experiments? I can’t think of too many other diseases that afford the opportunity for “engagement” the same way diabetes does? Pretty much any sort of human life benefits from some attention to what you eat, assuming you have anything to eat, but the data stream that diabetes can generate is astonishing. It seems like it would be very easy for science to answer a few quesitons (“is there an advantage to A1C in the fives? And no, the answer cannot involve hypoglycemia…”; “how many carbs can one eat and still reap the benefits of low carb?” “how many tests work?” etc.) that would push therapy to the next level. The tools are there. The data is there but tests are, in some ways, years behind the people who kick ■■■ around here (thinking particularly of people like BSC and 'Lil Mama, who had to treat themselves because their doctors couldn’t or didn’t? I know there’s other people two but I was sort of engaged in their threads?).
Yes diabetes sucks but Nazis sucked and we kicked their ■■■ so let’s get going on diabetes.
Thanks for the input on why it is difficult for people to change to newer ways of doing things. To me that’s just one more way in which different ages and times of diagnosis can give each other valuable input.
I actually have had a different experience, Jen in terms of teens and 20 somethings accepting advice from people my age. I have found that they are a lot more willing to do so than say I was at the same age. I think it also makes a difference if the older person shows a willingness to also listen to input from younger people, and doesn’t act like they “always know best” (the parental attitude at its worst) I’ve found that when there’s mutual respect then those age boundaries don’t matter that much.
Unfortunately, the complications of diabetes do not discriminate according to type. Both adults and children die in their sleep. All types have the potential for DKA experiences. One needs only to visit the neuropathy group to see the types unite in an attempt to help one another through what a recent poster referred to as “the boiling pain” of neuropathy. One need only to read the posts by Richard157 who humbly admits that his relatively complication free life is most likely due to a “protective factor” which they have yet to confirm.
Since I’ve been on this site, I have received great support and advice from most of the posters on this thread. With the odd exception, everyone has displayed compassion not only toward me but all the other posters. Let’s face it, we never know if someone is feeling suicidal or not.
It seems to me that it is nothing short of hubris to proclaim that because one has been slotted as a particular type, one has a good health care team, one is able to maintain tight control, one is thin, one is free of complications etc. etc. one is somehow superior to those who are not so fortunate. When I had months and months of high numbers, I had mild neuropathy without the boiling pain… luck…pure luck.
So thanks to all you posters who helped me through a very difficult diabetes summer… and, Natalie…thanks for posting this thread. You rock!
Type 1 is a pain. Back when I was dx’d they didn’t give me a “type” and I know this is true for folks dx’d well before my own. I call myself a Juvenile Diabetic but not because of my type
I think the T1 came to be named when diabetes was being dx’d in folks who were older and no long juvenile. Better to put a number on everything than define it for the laymen. Ha ha, I will admit I do like being number 1!
Interestingly enough, Jen, I sometimes get the irrational feeling that I’m “faking” diabetes, because as long as I eat low-carb, and bolus appropriately, I don’t have the wild swings that you and others have shown. However, all it takes to convince me otherwise is to eat a nice portion of something with refined carbs, and not bolus for it, and whee! off to the Himalayas! Because I’m a stubborn old lady, I have to do this every couple of months. My intellectual side knows perfectly well what will happen, but my emotional self is still in denial, after 20 years.
We humans are emotionally complex beings, aren’t we?
Thanks for the interesting post, Natalie, which has generated lots of thoughtful responses and interesting perspectives. The majority of Type 1 diabetes (90+%) is due to immune-mediated destruction of the beta cells of the pancreas–autoimmune diabetes, thus making a Type 1 reliant on exogenous insulin to survive. Type 1 diabetes is diagnosed at all ages, with the majority being adults at diagnosis, and onset can be rapid or slow. The vast majority of LADAs, indeed probably the majority of all adult-onset Type 1s, are still misdiagnosed as having Type 2 diabetes and given inappropriate treatment. So I’ll disagree with Jen, because a misdiagnosed Type 1 treated as if he/she has Type 2 diabetes will have much more rapid onset of complications than a correctly diagnosed Type 1 who is immediately put on exogenous insulin. But I definitely agree with Jen and the other posters who point out that childhood-onset is a vastly different experience than adult-onset, and for the most part people with adult-onset T1 will still have some remnant beta cell function that most people with childhood-onset just don’t have (although that too is changing–Bruce Buckingham MD at Stanford has had enormous success in maintaining beta cell function in teenagers with new onset Type 1, in clinical trials he is conducting). So, in summary, it’s complicated!
And I don’t think a name change is in JDRF’s future. Those dang cute kids are so effective…
I hadn’t thought of it in just that way before, but you’re right. I have several other chronic conditions, but don’t think about ANY of them the way I think about diabetes. With all the others, it’s just take the meds and forget about them. But you CAN’T do that with diabetes and expect any kind of decent outcome. So I’ve been engaging in a multi-year science experiment, and if I know anything at all about it, it’s because I’ve worked darn hard at research and study and observing myself. Flatliners is really the crown jewel in my data collection, because you guys convinced me that it COULD be done, if I would make the effort to do it. Not that I always do, LOL!!
It’s interesting, because in the blindness community, as someone with some usable vision, I’m often the one feeling as if I’m somehow faking it and don’t belong. I’ve often said that compared to totally blind people I feel like I have a lot of vision, but compared to fully sighted people I feel like I don’t have much. It leaves me feeling like I’m stuck between two worlds and don’t quite belong to either one (psychologically, at least), which is very common among the low vision population (it’s even mentioned quite often in the literature).
Maurie, I was diagnosed in 1968 and I had more than a “few” years without a glucometer. I think I did not start using one regularlyy until 1982, and then it was only a couple of times a day… before breakfast and before dinner. I used a sliding scale, standard boluses for each meal, and “guesstimated” the rest. I really did not start carb counting and all the other “new-fangled” ways of blood sugar monitoring/management until around1999-200. Back to Natalie’s original post; I really think Type one includes ALL of us who have autoimmune, insulin sensitive diabetes. And I agree with ZOE. No" true" or “false” type ones. Just Type Ones
This is an interstnig topic in itself. We all come here and gather as a community, bonded by diabetes as a shared “culture.” Yes. I call it a culture. This is the same thing that has happened with the blind community and even more so in the deaf community. If you read about the deaf culture, you see it is about “social beliefs, behaviors, art, literary traditions, history, values and shared institutions of communities.” When someone is perceived as not belonging, then there is friction.
Think about tudiabetes. Don’t you think a “culture” Is exactly what we have here? This is why I hereby coin the term “Diabetes Culture.”
