Hey all, I’m new to the site and just looking for some friends. Moreover looking for a sort of support group. I was diagnosed as a type1 in my 31st birthday and have struggled since. It seems as if everyone besides my parents that was/is close to me have kind of just drifted away. Maybe it’s me that’s changed but I don’t feel like I have. Sure my stress level is up and things have been hard but why am I feeling like I am on an island. are there any others who have been diagnosed with juvenile diabetes as an adult and how have those close to you been affected or changed after coming to grips with such major life changes?
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I was diagnosed at a similar age, 30. That was 32 years ago. You need to consider what any person struggles with when transiting their early 30’s. It’s a time of career demands and sorting out central themes and directions in your life. That stuff happens even to people without diabetes. It’s a time when old friends from college or younger days branch off to start their own families. They move away socially and sometimes physically.
A major chronic health diagnosis, however, can be a shock to anyone’s social network as well as a personal crisis. You’re forced to examine your own mortality prematurely. I think it’s a tough transition. You might consider seeking the help of a talk therapist. Sometimes we’re too close to our problems to see the way out. An in-person diabetes support group may be another healthy outlet for you.
Coming here can be a big help, too. I’ve found writing to be a therapeutic outlet. It takes the swirling craziness of circling thought and nails it down on paper or a screen. It roots out sloppy thinking and sometimes suggests the start of a solution.
Sometimes people close to you are affected by your diagnosis and that triggers a cascade of emotions that can serve as wedge that divides. These things can be worked through but all parties to the relationship have to want to make it work. Chronic illness diagnoses can be a straw that breaks the back of a relationship. The diagnosis and all the adjustment that it requires can become just one thing too many. That happens.
You need to concentrate on doing the things necessary, socially, emotionally, and physically that are good for you. If you need professional help, there is no shame in seeking it. It’s paradoxical but being strong means being vulnerable.
I may be reading way more into your post than is there. Please excuse my verbiage if it is not germane.
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I was dxed T1 in my twenties while in grad school. And yeah, they still called it “juvenile” back then. My dissertation adviser, a Brit with the dry wit typical of his kind, remarked “It must be even more annoying to have the juvenile kind.” My mom wanted me in the hospital; my big sister helpfully assured me it was no big deal (really? how do you feel about jabbing yourself with a syringe multiple times a day?); but my dad’s reaction topped 'em all. I was recently married, and when I called my parents to let them know what was going on, my dear old pops, crusty old SOB that he was, said “Diabetes, huh? Makes you impotent.” Thanks Dad, I’ll always remember your kind words in that moment of crisis.
Anyway, a warm welcome, @james15, to this very supportive community for members of the club to which no one wants to belong!
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Well, I was misdiagnosed as type 2 at age 70 and finally correctly diagnosed with LADA, which many of us refer to as type 1.5, a year and a half later. I just told my friends and relatives that it makes me feel young again to be diagnosed with what used to be called “juvenile diabetes” at age 71. Maybe I’m just a “late bloomer.”
My domestic partner, with whom I’d lived for more than a year before my initial diagnosis, is a steady-as-a-rock guy and just accepted it as reality. I’d lost so much weight before being correctly diagnosed that I hardly had any territory with enough fat in which to make insulin injections, so my partner started helping me out by giving me half my injections in locations difficult for me to reach. 
Even though I have since gained 30 pounds and am not as desperate for spots in which to rotate injection sites, he has continued this, allowing for a better rotation than I would have otherwise. Or maybe he just likes the extra opportunities to pinch my butt. I can’t really say that it has affected our relationship any. At this age, we realize that we have to adjust to whatever health problems present themselves, and this is a lot better than the problems many of our peers face.
As to my female acquaintances, most of them don’t know the difference between type 1 and type 2. And even after one briefly explains it, the next time one sees them, they still make the same comments as though nothing sunk in at all. I basically ignore it. I have good control of my diabetes, so I don’t expect they will ever have to assist me with a hypo or anything, so I mostly keep diabetes out of the conversation.
Anyway, welcome to the forum. Although I’m still pretty new here myself, I’ve found that diabetes forums have been my best support and have provided the best information since diagnosis. People actually living with the disease are often aware of a lot of things the doctors either don’t know or just never bring up.
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Hey @james15. Welcome to the club no one ever asks to join. We have something in common - I was also diagnosed on my birthday, though it was my 50th. My diagnosis is Type 2, but I quickly moved to using insulin, so face many similar challenges. Of course, mine was never called “juvenile diabetes,” just the fat & lazy kind (I was neither…).
I lot changes with the diagnosis, though, a lot does not. Like others have said, you’re at an age when most peoples’ lives are in transition, starting families, etc. As such, relationships changes are common. I got married at 30 – my single friends hanged on for a little while, but things were not the same; people moved on. New life experiences brought new relationships - that’s the nature of the beast we call “life.”
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Hi James, we are pretty close in age and our timeline isn’t that far off.
There have been some great successes and some horrible defeats in my life too over the past few years as well. You are not alone. This is a good place to connect.
You are not alone, James!
I was misdiagnosed as Type 2 when I was 32, just after my daughter was born.
My wife was the only one who understood what I was going through because she had just had Gestational Diabetes during the pregnancy (I now joke that I got post-gestational diabetes 
but everyone else would tell me “it’s from all the gummy bears you ate in college!” or “I heard coconut oil can cure your diabetes” or “eat a bunch of cinnamon!”
I asked multiple doctors to test me for Type 1 (I’m 6’ tall and weight ~165 lbs!) but all of them told me “It’s an expensive test and I am certain you have Type 2”… every single one of them!
After a year and half of trying Metformin + Glyburide to no avail, I finally talked to an endocrinologist over the phone and the first thing he told me was “looking at your chart, I want to test you for Type 1”
My entire life I’ve only ever been afraid of 2 things: spiders and needles… so the whole insulin thing was terrifying for me.
When my poor wife had GD, I couldn’t even help her inject (she had to do it herself in her big belly, I was so useless!)… so I always tell her “this is what I get for being such a bad husband when you had diabetes!”
I remember when I tried to inject my first flexpen in my stomach… I just sat there and my arm wouldn’t do it… it was just impossible for me to stab myself with a needle!
Luckily, I am now only afraid of spiders but what helped me the most was seeing Manny Hernandez give a talk at a Joslin Diabetes summit I presented at.
He said something like this: “most doctors don’t know anything about LADA, so I wanted to create a place where those with experience could help others… that’s when I created TuDiabetes”
As soon as I flew back home to Seattle, I joined this amazing website and also found a Diabetes Happy Hour that met about once a month.
It changed my life… thanks to these two amazing resources, I switched to an insulin pump, I got a Dexcom G4 CGM, and realized that I can still do most of the activities that I loved… because I would meet people that were on the rowing team with Type 1.5 (they just used the waterproof Animas pump) or ran marathons!
Suddenly playing ultimate frisbee and soccer again, didn’t seem so impossible!
And this website… wow, every single question I had about pumping or my Dexcom was answered… every time!
I was going crazy when I was forced to upgrade to Windows 8 and my Dexcom software would no longer work (so I couldn’t send the data to the CDE that was helping me set all my complicated basal rates and carb ratios).
A hero from Microsoft in Seattle posted a solution to the problem here on TuDiabetes, by writing a program to circumvent the issue… a year later Dexcom finally had an update for Windows 8… still not for Macs though! (and after typing that, I just noticed they have a new program for Macs: Dexcom Clarity | Diabetes Management Software | Dexcom …nice!)
Don’t give up… as Terry4 pointed out: life is very hard at our age (I’m 38 now and feel like I’m going through a midlife crisis!) and diabetes doesn’t make any of it easier, but you have a community of friends that want to help you!
I used to be super active on this site until a new job made that infeasible, someday soon I hope to be able to make it my home page again… but I can’t say enough good things about the people here.
Lastly, I would recommend trying to find a diabetes Happy Hour or support group in your area… and if you can’t find one, why not start one up!?
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I’m still afraid of both… it just happens that I’m rather attached to me feet (and other parts) and want to stay that way!
(I wonder if my BP goes up after any shot, fingerprick, or device insertion…? 
)
Welcome. You are not alone. This site is great and has helped me so much. There are many on this site willing to share their knowledge and give encouragement. Everyone has challenges. That’s just being human. People here are very supportive. I have been in the chat room on more than one occasion waiting for a BG to go down and I needed someone just to talk to about the current challenge. Once was in the wee hours and people online were great. I was diagnosed at 57, dka with BG of 1141. I was blessed to stay alive. Thank You, God!!! I am 60 years old and have discovered that having diabetes, although challenging is not the worst thing ever. Like yourself, diabetes and all. Life is GOOD!!!
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Thanks everyone, I’ve just been struggling and maybe just taking things to heart or an extreme. I guess I never considered the normal stress a person goes through at his age. Tend to attribute every little struggle to the disease. 1100 is crazy, I thought I was lucky for being alive after my initial 990. It’s just been a rough stretch with a septic infection that almost took me, the neuropathy, necrobiosis and everything else that seems to keep coming up. My last a1c was pretty high also, 9.? I believe. After working so hard to get it down to 7.1 I feel as though it’s just impossible sometimes. Not sure how bad it’d be if I was still using injections. I use the omnipod and that’s helped a great deal. Again, thank you for all your thoughtful replies. I’ll try and check back/in a little more often. Sounds like everyone benefits a great deal in connecting here.
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Hi, I was diagnosed in 1987 at age 8, but I completely understand you feeling alone. Most of my life, even when I was surrounded by friends, I felt a sense of loneliness. I think it was because I knew I was different from everyone else. And since I refused to advertise my diabetes, I felt as if I needed to protect my “secret”.
A lot of times when people find out you have diabetes, even if they don’t mean to, they treat you differently, or they themselves act differently toward you.
For me, I ended this cycle by coming to grips with my diabetes, and once I accepted it and began to live in peace and at ease with it and stop treating it like the enemy or some grave disease, I found that other people took my lead and began to treat me normally and not see me as “the diabetic” but as “good ol’ Tamra”.
Good luck to you, and always remember that you are not alone! 
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hi, i was diagnosed last October, since then my Girlfriend broke up, all the friends i through are my friends stop being friends with me,.
& I’m coming to grips with my diabetes, & since then i found a new Girlfriend who has type 1, to , & friends to,.
good luck, you not alone!.
The Diabetes Unconference is in a few weeks in Vegas, March 11-13 at the Flamingo. Rather than a traditional conference, with talks, questions and hurried, meaningful moments in the corridors and after hours events, the participants choose their own topics in a preliminary whiteboard session and then talked about what we wanted to talk about. We all have our own perspective on diabetes but talking about those things that we share can be very liberating. As can vodka shots out of empty test strip containers…
Many of the people who went last year worked to connect online beforehand and have stayed in touch online. Quite a few people reported interesting progress, lower A1Cs, “I decided to try a Dexcom, it works!”, posted videos of themselves inserting sensors and are perhaps more proudly flying our diabetes flags after getting together?
It’s the week of the NCAA Mens Basketball Tourney so the Flamingo was full of bros. I saw my friend Anna in the lobby and yelled (she didn’t hear, we met later…) so the bros behind me in the line to check in were like “whassup?” I explained “I’m here for the Diabetes Unconference, adults with diabetes getting together in Vegas to hangout and party [it’s more than that but, well, you know…]” and they were like “cool” which was a pleasant way to start.
This year, there are pre-events and some folks are planning hiking excursions, others are going go-karting as well as some interesting if perhaps more traditional diabetes talk type of discussions, before the Unconference part starts. We are also planning a run. Last year, a runner had a meeting so we only went a couple miles, but there are stairs!! hee hee…
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Welcome @james15 !!!
I was dx’d my freshman year in college at age 19. You’ve come to a great place. Great people, great support and great kindness. There are some dust ups here and there, but no different than any other family!!!
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I was just diagnosed as T1D last month at age 47. So I’m still a newb but have found it helpful to be open about it at work and have discussions with co-workers. They were also able to hook me up with some other local PWD’s. Although I gotta admit by going public it does get a little annoying having people confuse me with Type 2 symptoms/treatment and telling me what I shouldn’t eat.
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james15, i don’t know, what i will do, with-out, this site, it been here for me, when i need it, everone is so nice, i can go-on & on,.
James15; I was diagnosed at age 9. So I can’t say I know how it feels to get diagnosed late in life. However, I am now 37 and still living complication free. But the year I was diagnosed was the pits for me; we were moving out of NY which I was very against at the time and we were living at my Grandmothers house for the duration. Until my parents bought a house down south. We moved into her house at the end of August and I was diagnosed the week after Halloween. So at first my parents thought I was acting out and would ground me ect…
Then came the thirst probably around early October; I had my first sugar headache the afternoon before I went into the hospital shortly before diagnosis. I had a great doctor; she would meet with me alone in the hospital and she explained that I needed to be the captain of my ship. That there was no cure and if I did what I was told I could live a long happy healthy life. I found it a bitter pill to swallow; she would take me into the faculty lounge (while I was still in the hospital) as if we were going out to dinner at a restaurant and then she would have me talk my way though what I needed to do to eat what was in front of me. Starting with the sugar stick; what the number meant and how it affected my dosing. We would eat dinner together and discuss things like adults and I really appreciated her candidness. I also recognized that she did not need to do that; but it let me ask the questions I did not want to ask in front of my parents.
Dealing with the mechanics of living with diabetes was the easy part; 2 shots a day; test your blood; pee on a strip ect… But we left NY right after Christmas that year. So I had to move to a new town and I lost my support group of friends. I made new friends; but they did not understand because they were not around before the diagnosis. The kids at my old school; I had known since pre-school and the ones that I was close with I knew almost like a brother. I wrote letters back and forth; but it was not the same as taking a bike ride in the old neighborhood and venting like we use to do.
So I was an island for many years, Mom took me to a few support groups but it was mainly for type 2 folks and I did not fit in at that age. I resented the fact that my childhood ended on that day in November; it was not my choice. But things carried on and then 6 years later my brother was diagnosed by me of all people as a T1. I caught his really early; mom use to make me test him when he was running late in the morning. Kind of like a look at all the stuff Ed does without being told. Well on this particular morning he was 152. We all stood there in disbelief and shock.
He did not have to go into the hospital; and I was there to coach him. Often times though when we got to be teenagers he became hard headed and refused to take his tests seriously. I never lost my diligence; but I always wanted that one more day without the disease or a day off. But I realized that would not help my current situation.
Know that you are not alone and we have all been in similar circumstances.
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Hi. I am a type 1 (originally misdiagnosed as a type 2). It’s been about 3 years now. I’m 56 years old. Since then, I have fired my endocrinologist and get most of my info online. Hardest part of this illness has been the cost of insulin. But I have found lots of support online and have come a long way. DKA just a few years ago, now my last a1c was 5.5. I try to follow a low carb diet for the most part. I find Dr. Bernstein and Jimmy Moore to be a wealth of knowledge for me.
@Jo122 – You’ve squeezed a lot of D-living into a short time; misdiagnosis, dumping your endo ( a rite of passage!), DKA, discovering the magic of low-carb, and busting into the 5% club. It appears you’ve also discovered the power of information and the internet. Good for you!
The Internet has literally saved me. I follow low carb way of life most days. Occasionally I enjoy a sweet treat but when I see what it does to my blood sugar, I get back on track. I sure do miss having a working pancreas.
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