Type 1: Loners vs. Lovers

So I think I've asked this once before...but are there any Type 1's out there that have never met another Type 1 in person?

...OK maybe you've met a few, but perhaps you wouldn't really call any of them your "friends"? ...is the online community all you really need?

On the flip side, how many Type 1's out there have one or even many personal friends with Type 1? ...Maybe even a love interest or spouse?

I'd like to hear your experiences, as I believe this is one of the most underestimated aspects of dealing with this disease, especially as the years begin to pile on.

So, are you more of a Type 1 loner or lover?

I have met many type 1s. I was diagnosed when I was 6, just before beginning first grade. When I began first grade I learned that another first grader, in a class down the hall, was also type 1. When I was in 4th grade a friend in my class was diagnosed. When I was a sophomore in high school a girl in my biology class was diagnosed. During my undergrad work I had several classes with a girl who was also type 1 (we freaked out an old lady by publicly bolusing in a bathroom at a restaurant - the lady thought we were doing drugs). A high school friend of mine is now engaged to a woman who is type 1. And I met another man, through high school friends, who is type 1. And of course, last but definitely not least, my aunt was type 1 - diagnosed at age 9.

So........I know many type 1s. Weird, considering I really don't know THAT many people.

Only T1 growing up, except for diabetic camp. I work with one T1 I know about in my building of approx 500 people. Lots of type 2’s, though. That is why TU meant (means) so much to me. There is almost always someone who understands me.

well i have a bit of a funny story. i have known many type 1's in my life, my mom was type 1, i met several kids who were type 1 when I worked in schools, and occasionally i find a person with a pump or a glucometer on the highways and biways of life.

My funny story though was a diabetic I knew before i was diabetic. Lets call her Jane, not her real name, and she was diagnosed as a youngster. Since my mom was type 1, and her parents and my parents knew each other, my mom sort of helped her parents with the disease. When I was diagnosed at age 17, we Jane and i were in the same grade at the same HS , and so it was cool to know someone in a similar situation. So I asked her on a date and we went. I prefer to think she did a mercy date. LOL

Well it did not work out, the truth is we were in very different places, and while I thought she was so attractive and cool, she sort of thought i was a geek and not so bright. So we graduated and went our separate ways for over 35 years.

Last year, we both got caught up with our HS class because of a reunion and we started talking a little online. We are both married to others so no park, but she asked me to call because she was considering a CGM. Something i use and she does not. She spoke fondly of my mom, ( I appreciated that), and we sort of rekindled our acquaintance. I still think she is an awesome person, and a good role model for me. We got to compare kids, (non diabetic) and we had a very nice chat.

rick phillips

I’ve only met one other T1, a friend who has since moved to a different state. When we were close I wasn’t diagnosed, so we weren’t diabetes buddies.

I'm not sure I really understand what you are asking here.

Are you asking about commonalities between people with auto-immune diabetes diagnosed when they were children? Because yes, I would agree with you that people who went through this have a shared experience of something terrible and traumatic.

Or were you referring to 'adult-onset insulin-dependent people with diabetes'? Because this is not just classic Type 1 people.

I recently attended an insulin-dosing workshop where we were taught to adjust our insulin to our food and our lifestyles. For me the best part of the experience was meeting other insulin-dependent people in person and sharing experiences and tips - stuff that the nurses would never tell you, like how it's ok to reuse your lancet lol.

Of the 10 people there, only one had been diagnosed as a child. It was interesting and often heart-wrenching to hear her experiences of being diagnosed aged seven. But all the rest of us had been diagnosed as adults (21 and older) and had had the chance to live 'normal' lives so as much as we could empathize, we could never know what it was like to go through that sort of childhood. So obviously, the adult-onset people had a different set of experiences and issues compared to what the juvenile-onset person had gone through.

Of the 9 adult-onset cases, 8 had antibodies, one did not. Me. But I live my life the exact same way as they do - except with less carb in my diet and more insulin resistance!

Your post unnecessarily polarizes PWDs into artificial 'categories' which don't capture the fullness of shared experiences. For example, the shared experiences of those who were diagnosed with insulin-dependent diabetes as children, which are quite different from the shared experiences of those diagnosed with insulin-dependent diabetes as adults. 'Type' doesn't come into it. Do you feel you would have nothing in common with someone who was insulin-dependent, who had got there without an autoimmune episode? Or do you need the presence of antibodies to feel a connection?

I've met three T1 and one T2. T1#1 was in college (late 1980s...) and somebody said 'hey, he's diabetic too', shook hands, drank beer, that was about it. #2 marked my pump when I moved to a new office last year. I don't hide it and he said 'hey, a MM' and he has a Ping. A third was a parent of one of the TKD students, who seemed impressed with me having stuck with that. I raved about the pump to him and he was going to look into it but, unfortunately, I left before I got to know them that well either. The T2 was another coworker. I also had a very close friend (buddies for 20 years, she was kind of personally responsible for helping me get off my butt by suggesting I join her Tae Kwon Do classes...) had type G.

Lila: I think that she was asking re T1 as it was in the T1 forum and that it is a legitimate question? I figured I'd broaden my answer to include the T2 b/c I think what the OP was getting at is that there aren't that many of us? They may have been curious about T1, which is a demographically less frequent variety? There are two different ICD-9 codes, 250.01 and 250.02. Interesting, looking at the manual, all the codes cover is not-uncontrolled. Control is not an option to the medical industry? http://www.icd9data.com/2010/Volume1/240-279/249-259/250/default.ht.... According to the Wikipedia article, the term LADA was only coined in 1993? I am intrigued by everyone's experiences but I'm not sure it's linguistically convenient to say T1/T2/LADA every time people are posting either? I think that a lot of people with the less common varieties would have been lumped into a different category until recent advances.

Grew up with a T-1 mother, have a aunt on my dad’s side who is T-1 and a cousin on my mothers side who is also T-1. It has also seemed since high school I have had at least one T-1 friend some closer then others,. The closest two would have to be one who I found out after a case of the munchies and eating his snack and another who I was in competition with for the affection of a young lady, got to be a groomsman in their wedding lol.

I grew up with T1 and the only others I knew personally were from camps and teen weekends.

As an adult, I haven't really met any others...this may be in part because I'm not very open about it. There is at least one other person I know of/have seen in our building but I've never had the chance to talk to her... and recently I found out one of my coworkers is pre-diabetic (or so he was told...not sure how that works, but many of his siblings and relatives have type 2)..Interestingly, the nutritionist he saw advocated a lower carb diet and even discussed what we call TAG...so there's hope!

As far as relating/experiences...well your (diabetes) mileage may vary is a common saying so there are a lot points where we differ and like no individual is exactly the same no one's diabetic experience is exactly like any one else's and this is what I value from meeting (online or in person) with other diabetics...because there is always something to learn.

One of the things I've gotten from the online community which would be hard to replicate in person unless I somehow lived in a demongraphically dense area of diabetics...is just knowing that I'm not the only one who has to wake up and test several times a day and count/watch carb intake (similar I would think for all types)...just knowing that has really given me motivation these past two years to take better care of myself...and not to give in to self-pity or feeling like victim.

I've met a few. When I was first diagnosed at 12 I would attend type one diabetes support groups and would go to the diabetes camps offered in my state. I can't say that I became close friends with any of them, though. The online communities that I have come across over the years have helped, but more and more I see petty 'type wars' pop up and that kind of repeals me and makes me less inclined to want to join in because it can get hard to actually talk about experiences and treatments over the fray.

That isn't to say I haven't taken away anything positive, though. With the experiences I had as a kid I would say that it helped me feel a little less odd about having this all encompassing disease and learn how to treat it like it was just any type of daily ritual (brush teeth, test blood, bolus, eat breakfast, go to work, etc). Which keeps me from wallowing in self pity about it all (though I do have my dark moments). I think the online communities have helped me in embracing new technology - I came to the pump kicking and screaming, but have one now! - and in book suggestions. So all in all, I would say that I'm a loner who has found a way to gather small internal support beams from outside sources on occasion.

Ive met many and usually see the pump tubing hanging off someone when I go out. I also work with 5 people who wear insulin pumps.

For 14 years of being diabetic, I had never met another type 1 outside of my clinic. I didn't get involved in any aspect of the community growing up and I'm from a small town where there were none in my schools, etc.

I met a friend of a friend (just once) who is type 1, and it blew my mind! It felt so strange. We only talked for a couple minutes, about what types of pumps we used.

And then this year I got involved with the JDRF. Being surrounded by people who just knew the deal and around whom I didn't have to worry about how things looked (testing, pulling out pump, etc) for the first time was a really powerful feeling. This forum is also amazing. I don't post much, but being able to read the thoughts of so many others is so helpful.

I know 2 T1s but they are children. There are 4 T2s at my school, 2 diet controlled, and 2 on oral medications. We all suffer the same way, tho.

When I was younger I knew a few and would attend the D camps and what not. From my mid teens on I didnt know any other PWD. Ive now got a buddy that we meet and BS about D stuff, but other than him I dont really know anyone.

Frankly, Im happy to approach folks and what not, but find most PWD that I meet arent real receptive when it comes to D. So, its my one buddy and the DOC essentially.

I'm sorry that you feel that way, Lila. It was not my intention to polarize any group of PWD, and I agree with you that we have all have many similar experiences to share.

I was just asking some questions, and I appreciate your answer.

Living with diabetes for some time and NO shortage of friends with type 1 …my favourite story ( I have a few actually ) : Summer 2000 , eating outdoors at Boston Pizza ; couple( look like tourists ) at next table is delivering insulin …went to their table , chatted a bit and asked if they were Australians …surprise : from my mother country , the Netherlands …I told them that I had visited Holland several months ago for a class reunion . Hubby and I invite them to our home for coffee , which they accepted. Showed some pictures of my then recent trip …and lo and behold …one of my classmates is his Aunt , where I stayed and where the reunion was held !! They and their 8 year old visited us this summer and stayed here , watched the Dutch soccer game /South Africa on TV !!! By the way Wouter is a Tu member

In my family there are about 5 Type 1’s. My oldest cusin was the first Type 1 and I was the 2nd and she helped me to understand what to do with it. I in turn helped my younger cusion how to handel things then we had 2 more that took Type 1 into the family. No friends just family

I was diagnosed with Type 1 at age 35, and I definitely like having other Type 1 friends (although my closest friend with diabetes has Type 2–he and I have been friends since prior to our respective diagnoses). I have to qualify my comments to say I knew several T1s prior to my own diagnosis, and they took such horrible care of themselves, and that is scary and distressing to me. When I was first diagnosed, I attended International Diabetic Athlete Association conferences, now DESA (Diabetes Exercise and Sports Association). There I made valuable friends, learned things that the docs and CDEs don’t tell you, and felt less alone. Also, DESA is well-represented by highly motivated people, and I appreciate being around people who are interested in taking really good care of themselves. Now, I really enjoy having online friends here at TuD, and then courtesy of Zoe and JDRF we now have a Type 1 women’s support group here in the San Francisco Bay Area. Love that. So I guess I am a Type 1 lover!!!

Well, here's the elevator pitch of my personal experience.

My first seventeen years of living with Type 1 i was completely alone, an isolated island unto myself. Thats how I liked it...but unfortunately, diabetes didn't really like me. It was a very long period of denial.

A few years ago, I discovered this community, and connected with many people living with all types of diabetes and I learned more about this disease than I could ever imagine. And when I say 'connected', I mean online, in person, with support groups, and all points in between. It has been a truly enlightening experience.

So these days I find myself a little less involved with the diabetic communities, and kinda just back to the old daily grind of testing, shooting, and moving on with life (you know...paychecks, bills, relationships)...although I do have a better sense of awareness and now I have many resources to tap when I need help or when I am needed.

I posted this simply to get reacquainted with the human and social experience of living with diabetes, and in my particular case, juvenile onset diabetes for nearly 20 years. All I know now is that I still have so much to learn.

What a great story!