Is T1D the biggest challenge/misfortune in your life or not really?

@martinb

I became T1D at age 22 and am
72 now. By the time you get to be my age, you realize that just about everybody has one or more chronic health problems. From my perspective, MANY of them are. More problematic than diabetes.

I personally think that this is a MAGICAL time to be a diabetic … I’ll bet that isn’t an adjective you expected to see. Why? We have new and better insulins, accurate CGMs, first-generation closed-loop insulin pump and CHM combinations. Better treatments if/when complications develop. And all of those things will be significantly better 5 years from now!

While I’m also a glass half full guy, everyone gets dealt a few unexpected cards over time and, for me at least, T2D is less problematic than many.

Good luck!

John

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It is true that there have been significant advances in treatment modalities across this past decade, and that it has made a real difference in our day to day control. What is also true is that there is, and has been, a lack of funding for research to cure this disease. We all know why.

I was almost 14 when I was diagnosed. It was a challenge at first (this was in 1960, after all), because (1) my parents and I, and to some extent my GP, didn’t know anything about diabetes, and (2) the available therapy was so crude compared to what’s available now. Fortunately, my parents were caring and positive, and we all learned as quickly as we could. I learned how to boil my glass syringes (to sterilize them), and how to measure urine glucose (by dropping a tablet into the test tube and letting the solution boil and change colors: great fun for a science nerd, actually), and my parents learned what to do if I passed out after a long game of volleyball. I survived, and of course have since seen tremendous improvements in how we take care of the disease. Now it’s second-nature, and underlies my life without being all that intrusive.

One thing I’ve always tried to keep in mind, and tell the folks at the diabetes self-management classes I give a short talk to every month (or used to, before COVID): if you have to have a long-term permanent medical condition, diabetes is about the best one to have. You can control it and lead a pretty normal life if you work at it. Other conditions are generally more difficult to self-manage. And it gets better every year!

–Keith

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Diabetes can be overwhelming when a person is first diagnosed, so what you are feeling right now is both normal and understandable. Most of us go through emotions similar to those of grief – denial, anger, depression, and (hopefully) acceptance. It’s OK if you are frightened, angry, or upset right now. Things will get better as you learn to understand what you need to do to feel healthy and “normal” again.

Knowledge is power. I agree with others that the more you can read, discuss, and learn about diabetes, the more power you will have to control your life. Diabetes does not have to limit your dreams or goals. You can do what you normally would do, within reason. Diabetes just means that you have to be self-aware as you control your blood sugars while pursuing your dreams.

While diabetes may seem like the worst thing that could possibly happen to you, I sincerely hope that it IS, because that will mean that you never have to face true trauma or tragedy in your life. Diabetes isn’t great, but it is something that you can live with and you can control once you understand it. Give yourself time to learn and to adapt. You will be fine, and we are all here to help and to listen if you need us.

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Type 1 Diabetes (1963 as a teen) has definitely not been the biggest challenge in my life – 1) it is just part of life’s conditions 2) hasn’t everyone had a first love heartbreak? 3) hasn’t everyone had (ongoing) regret or shame or sorrow (and joy, as well, of course … but the question here was about misfortune)? 4) if anyone has had a fire, flood, windstorm that destroyed home, possessions & 5) lost the lives of dear ones – then it’s pretty easy to see what a biggest challenge/misfortune is.

To me THOSE are the type of things far harder to overcome or to live with compared to the physical (and psycho-emotional) episodes of a half-hour or a day of low BGs as well as the more extended periods of high BGs.

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For many of us here on this forum, we will most likely live a longer, more satisfying, healthier life than had we not had diabetes. Being diabetic forces us to manage what we eat, how we exercise and do the best we can to handle all of our physical as well as emotional needs. In short, we pay attention to our bodies. How many of us, had we not contracted this scourge would have gone through life, deteriorating little by little more each year and end up living many years of marginal health only to succumb to other much harder-to-control illnesses? The older we get, the harder it is to take action to better ourselves. At least with diabetes, we got an early in life wake up call.

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I have stayed out of this thread because I am type 2, but what you said above is very true to me. At 40 I got a wake up call and became very compliant, with diet, exercise and as it progressed medication and insulin.

Also I probably would be walking around with an oxygen regenerator if I never developed diabetes. Probably COPD from heavy smoking, if not lung cancer.

I think of my diagnosis as a blessing and not a curse.

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My wake up call was at age 42, never smoked, but had incredibly poor eating habits as I could eat as much junk as I wanted and was so active that it covered most of my dietary sins.

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Now approaching 60, I’ve had T1DM since 1994 when I was in my late 20s and would still rather that had not occurred.
The fact is, it did, so my choices became: what am I going to do about it? I got through my self- pity and try my best to live the life I would have lived, without diabetes.
It impacts my need to plan and be organized, bring snacks with me if I’m active, consider what I’m eating and take insulin as appropriate. I generally avoid sweets and deserts, too hard to dose for.
Things got a lot easier with CGM and a pump, although I’ve only adopted those two technologies in the last couple of years.

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CJ - I think you’re type 2.

Then you know more than me. - Joslin has been trying to type me for more than 30 years. I finally took the latest and greatest MODY with like 56+ markers as they were convinced I had to be MODY and even there had a mosaic pattern, but nothing conclusive. All they know and I know is that I only tolerate fast-acting insulin as long-acting insulin even taking 1 unit, will drive me low at night. Some day, they will have me figured out but for the past several decades, just test after test and nothing conclusive when it comes to type. It does not really matter as I can keep an A1C in the 5,7 range with a G6 CGM and about 8 shots MDI each day.

52 years today! And yes as a little eight year old it was not what I wanted. What child likes taking a shot everyday?!
I heard all the horrible things that might happen to me-blind in 5 years, no feet, no kidneys, no children,not living past 30. But at that young age, it wasn’t really something I worried about. As at age, you think 30 is a very, very long way off. I think the challenge was more for my parents and family.
Do I now think it is a misfortune for me? Not so much! Yes, I do hate it sometimes but I really do think I am healthier now than most people my age. I run circles around coworkers in their 20’s because I take care of myself. I eat a well-balanced diet, I use technology to make my life easier, I get exercise everyday, I don’t drink excess (yes I love a glass of wine most nights), I see my medical team members on a regular basis, get my labs done. Overall, the diabetes has gotten easier and easier for me over the years. How much I think about my diabetes now vs 52 years ago, is night and day.
A CGM was the biggest game changer for me. For me knowledge is power. Get out there, meet others with diabetes, find support groups, check out TCOYD (they are going to have their first in person event type 1 retreat next year), check out mental help ( Behavioral Diabetes Institute was super helpful for me). There is help out there for anyone looking. This is our life and thankfully we have lots of help out there.
Challenge-sure, but isn’t a lot in our daily life challenging? Nothing is ever easy but not the end of everything.

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That’s exactly where I land on the question…never had to face any tragedy and my life seemed sort of charmed. I had accomplished everything I had set out to do, was in my late 50’s and in what I thought was great health and sort of coasting towards early retirement and planning on a long life. Then the diagnosis shocked me.

I’m past the shock now but do feel that the T1 diagnosis has been the biggest bummer of my life so far. I say that only because I have had nothing tragic in my life before and was in a good place physically and mentally before the diagnosis. Time will tell if I still feel like that in 10-20 years.

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Did it come in middle of nowhere ? Was there something that you can point it that might of caused it?

Think of it this way-you’re lucky to get it at 50 when you’re life is basically shaped. I was 29.

Can you see the other side of that comment?

Type 1 diagnoses are pretty much evenly split between childhood onset and adult onset. If later in life diagnosis is more fortunate, you landed in a much better place than the half of us who grew up with this condition and didn’t get to experience childhood, coming of age, college, those prime time drinking/partying/socializing years, as well as every other formative milestone… without having to do so while juggling this “burden”. From this side of the line, you seem really lucky to me.

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YDMV. The OP asked a valid question and I think the variety of responses illustrate the variety of feelings engendered by diabetes or any chronic physical condition. My response was not intended to diminish anybody else’s or to imply anything in comparison to anybody. There’s no good reason to start comparing who’s got it worse, that’s not what the OP asked and it is impossible to do.

My apologies. That wasn’t my intention. I was trying, and possibly failing, to highlight some positives in the OP’s experience, not diminish the struggle.

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This is definitely not the biggest challenge in my life. I did not develop Type 1 until age 60 after receiving chemotherapy/immunotherapy for melanoma. I presented suddenly in DKA, landed in ED then ICU. I was very ill and developed multiple other autoimmune issues. It took about 2 years to feel really good. I feel great now. I am not upset that I have diabetes, but I do consider myself high maintenance as far I all the things I have to do to stay well.

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I think it depends on how to react to obstacles.

For some people, they are diagnosed late in life and are completely overwhelmed, do not engage with the illness in any practical way, and end up with severe/life altering tragedy (like amputation). For T1s, we just end up dead of we do that, so in some ways, more severe illness is preferable because people are less likely to, “let it slide.” People adapt or they die. The choice is pretty black and white.

I suspect that people with boundaries imposed on them are naturally inclined towards creative problem solving, resiliency, higher levels of empathy, and a better understanding of the human condition. Illness and injury impact everyone during the course of life. You might as well develop the skills for it. I don’t view my experience in the world as a diabetic as a negative one. It has become a large part of my identity and I don’t know who I would be without it.

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