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

I am asking question as newly diagnosed want to suss out the enormity of this new challenge…

Would love to hear from others

Before I was diagnosed with diabetes at the age of 38, I had extremely high blood pressure due to renal stenosis which was threatening my one kidney (2nd kidney was damaged during childbirth and was nonfunctional) and I’d had a serious depression caused by a blood pressure medication, so dealing with diabetes seemed fairly easy in comparison. Having also had a heart attack at 39, developed fibromyalgia a year later, gone through treatment for 2 different types of cancer, one of which had a survival rate of less than 20%, and having also had a stroke, to this day diabetes still seems to be the least of my problems…especially since I’ve been pretty tightly controlled for years. And, I feel like diabetes is something I CAN control, unlike poor inherited genetics.

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It is a real issue that we have to live with moment to moment. I found that after the first couple months as I got better at it its burden was reduced.

I would say having a CGM was by a large amount the most responsible for the reduction in mental burden T1D brought me.

I live a normal life and feel I can do everything I want to do.

This is probably very subjective but to have good control I think the reality is we need to watch what we eat. I used to have desert a couple times a week but now I only do on someones birthday.

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I’ve had T1 for 55 years, and I was four when I was diagnosed. It is not a death sentence, but it does take planning and making adjustments a number of times a day. I have none of the side effects that come with long-term T1D. I put that down to my genes and not growing up with the fast food industry being so prevalent.

The best advice I can give you is to test your blood sugar or use a CGM. A high BG is not a sign that you’re a terrible person. It’s a number, and that number needs some action from you. Are my blood sugars always in range and great? No way, but I make a point not to push my “luck” too much.

There is a great book called Think Like a Pancreas. I highly recommend it.

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52 years with it, and no it truly doesn’t weigh on me. My husband has cancer, he’s dealing with so much more. Someone else said the book Think Like a Pancreas is a good one. I agree!

63 yrs of type 1 here. After 50 yrs of diabetes I had to suddenly get two heart stents after having had very few minor complications. My LDL was too high due to following The Bernstein 30 carbs a day way of eating. That is the only thing I regret about having diabetes. My life would be easier without diabetes, but there are far worse conditions that people have to deal with. I certainly don’t waste any time feeling sorry for myself, and never have. It just is what it is. I think that I do a wonderful job dealing with a difficult disease and I am quite proud of that.

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When I was first diagnosed, ABSOLUTELY. It sure felt that way at the time. I was terrified of needles! Didn’t want a life of shots. (heck, I never did outgrow that. It’s why I love pumping, where I only need one prick every three days… Or 4, if I’m bad.) I was young, and my own fears were exacerbated by everyone treating me like a liability, not a child. I was constantly being told I couldn’t participate. Couldn’t go on field trips, had to sit in the library during recess, couldn’t play sports, had to sit out on the sidelines during gym class, couldn’t go to the park with the other kids after school, etc… Technically, we had the same legal right to be treated normally that T1 kids today do, but prior to the Internet, nobody knew about those laws, so they weren’t executed.

I really struggled with depression and suicidal thoughts from ages 8-12, until I started developing a T1 peer group. Going to a diabetic summer camp, making diabetic friends, and really being able to live a great and unlimited life for those few weeks every summer literally saved my life. It was my first glimpse into the fact that my future didn’t have to be as bleak as I imagined it was. Before making friends, I couldn’t imagine any joy in living this way. I just didn’t want this life. It also got way better as an adult, when I became my own authority figure and not just a liability to anyone responsible for me.

Depression is a serious issue with diabetics. Adolescents and young adults with T1 are statistically at greater risk of suicide and depression. It’s a massive focus of endocrinology professionals right now, and they’re making great strides to make help available to us.

https://www.jdrf.org/t1d-resources/living-with-t1d/mental-health/depression/

https://diabetes.org/diabetes/type-1/mental-health

I live a wonderful life now. Something I never could have imagined when I was newly diagnosed. It comes with a lot of hard work, diabetes and otherwise, but the reward for that work is phenomenal. My life is full of love, beauty, nature, a homesteading lifestyle I find very fulfilling, incredible food, and lots of adventure. A little more money would reduce the stress load, though. I can honestly say that my diabetes hasn’t held me back from any of it. With a little attention, foresight, and planning, my diabetes isn’t a restriction. It’s simply another chore in the day to day routine. Sure, it’s a challenge. Some days are harder than others. But it is no where close to being the biggest challenge or misfortune I’ve faced. When you stick it out, you learn ways of making it easier on yourself.

The new tech has been incredible for diminishing the burden, too! Now it seems like I just bolus for food, feed the devices insulin and electricity, and occasional maintenance, and go on living while they carry the burden in the background.

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Amazing how different our childhood’s were Robyn_H. I was dx at 8 in 1959 in Southern California. I too hated the shots. The needles were big and the glass syringe was kept in alcohol and had to be boiled. I practiced for a long time with an orange, but nothing would make me try to give my own shots. Now I take many shots a day and it just doesn’t bother me, although any other needle does scare me.

I was never told I couldn’t participate in any activity. I did everything any other kid my age did. I was treated quite normally by everybody. I was never told that I would die early for which I am very thankful. I wasn’t on any kind of diet either, although my mom never bought junk anyway. No chips, pop, donuts etc. I was allowed to make cupcakes and I made tons of chocolate chip cookies and ate plenty of dough. My doctor thought diabetics should be treated like any other kid and I was. I ate cake at parties and as a teen, I ate lots of food that I would never touch now. My urine just had to be free of sugar once a day. When I spent the night at friend’s houses, my mom would come over in the mornings and give me a shot. I only took one shot a day.

I went to church camps, but never even heard of camps for diabetics. I doubt that I would have wanted to go and my parents certainly wouldn’t have forced me to go. I didn’t care that I didn’t know any other diabetics. There was one other teen with diabetes in my huge school and she was taken by ambulance at least twice from school to the hospital. Obviously we didn’t have the same doctor. I didn’t really know another person with diabetes until I was in my 30’s.

I didn’t get depressed until I was in college and I stayed depressed on and off for years. My mom was undiagnosed bipolar and our son is bipolar. I still consider depression much worse than diabetes.

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Just want to add that I don’t think that my doctor was correct, and I often think that I really should have been quite ill after 22 yrs of urine testing.

I also realize that not being treated like the average child would have affected me deeply.

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I think the 80s were the start of the litigation era, where everyone was suing someone or afraid of getting sued. It was way easier for the schools to say, “nuh uh, I’m not taking liability for anything that happens to her.”. If I needed any sort of special consideration then a parent had to be present to handle it. It didn’t matter that my parents weren’t involved in my treatment decisions.

Now the kids all seem to have 504 plans, so they can’t do that anymore.

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I think in the beginning its normal to be overwhelmed. I’m another oldie, with 57 years T1D, dx at age 5. It was much easier back then with 1 injection per day and higher bgs. Urine testing and occasional change in insulin dose based on urine testing logs.

In late 80s I found a diabetes ‘team’. This included endo, dietician, eye doctor and others. I received alot more information and A1Cs to show progress.

But it didn’t stop me from sports, college, travel to 18 countries in Europe, many cross country trips in US to visit relatives, Disney World and everything else my family enjoyed.
The only real limitation was that years ago, they would not let me donate blood because I used animal insulins in the early days.

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I was diagnosed at 21 so I was lucky to not have it as a little kid.
I’m 56 now and I really can’t remember what it was like before I had it.
It’s become second nature to me even though I hate it when it acts up unexpectedly.

It reminds me of when I got my first automatic transmission car, and I kept grabbing for the stickshift for years later.

If my diabetes was magically cured I would have 35 years of habits to lose.

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I wasn’t upset, I had been misdiagnosed for years so getting told I actually had type 1 answered all sorts of things that hadn’t made sense to me. At that point I knew I had to have shots to stay alive, but that I could stay alive. An uncle had type 1 and died young back in the early 40’s.

It’s more of a pain and it can cause aggravation and sometimes it even gets you down. We have to carry extra stuff around and be more prepared when we go places, You can’t just jump in the pool and swim 20 laps. But it’s all doable. Thank Goodness!

Two thoughts.

First no, it is not the biggest challenge in my life. When I was nine (9), my father left us and died a few years later. Although I was not affected emotionally, it created a family dynamic that I have suffered from my whole life, although the resulting harm is mostly economic and educational, by limiting my later success. Also, without going into detail, I went through a very rough patch in my late teens and early twenties, that I would only describe as horrifying to experience, but I am able to forget, so no lasting trauma.

Second, my hardships have made me a better person, including having Type 1, although to a lesser degree. I have come away from the pain of my youth as an emotionally intelligent, wiser person, and I hypothesize that is at least partially the result of my father’s leaving, as well as my mental health issues. Although diabetes did not strongly make me a better person, without it, my lifestyle might be much worse, considering what I lived like. I found fitness around the time of the resolution of my mental health difficulties, and that has led to better self-care, and one should not underplay the power of fitness on one’s well-being.

At least partially, diabetes will kill me, and it does circumscribe my life, but so far, I am suffering only from quality-of-life issues. It is more my outlook on life, not to lament, but to make the best of any situation. Would life be better now if I had not had those negative experiences? Most likely, but one really can’t be sure, and again, it’s not a reason for regret.

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Another vein of thought, if I did not have diabetes, some aspects of life would be simpler:

  • I could work out without having to closely monitor my blood sugar.
  • I could eat without having to calculate carbs and insulin.
  • I could not eat for long periods, if that was what I wanted.
  • I could travel easily, with less gear and less preparation.
  • I could live a very disordered life, if that is what I wanted.

Seriously, the more I do this, the more I feel that there are benefits to having diabetes, because it circumscribes my choices, but really, no one wants to be diabetic…

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I like the phrase: “Is your glass half empty or half full?” It is what it is, but how we choose (I know it is not always a choice) to interpret our particular situations can make all the difference. I was diagnosed LADA at age 67, almost ten years ago. Been a roller coaster since then, but I try, when I can, not to dwell on the challenges (there have been many), but to celebrate the successes. I find that feeling positive about life has its own rewards and that stress affects my BG numbers negatively.
I know it is so much easier to write this than to live this… but when I can I try to live the cup half full life.
I am a fairly new member, I am awestruck by the resilience of members of this forum.

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Diabetes sucks. It’s definitely a misfortune to join the club.
I’ve had diabetes for 30 years. For the first 20-25, the technology I used and the results I got changed, but not all that much.
In the last 5 or so years, the results I’ve gotten have improved significantly and the amount of mental burden to get those results has decreased significantly because of technology. It’s such a huge change for me that I can see my BG by looking at my watch and that my pump makes little corrections for me that lessen highs and lows.
I hope there won’t be another long plateau and that things will continue to improve at their current rate. I believe they will and that the misfortune of diabetes for you will be much less than the misfortune was for us veterans just as the misfortune for us was much less than for those who came before us in terms of quality of life and lifespan.
Diabetes still sucks. I’m sorry you have it and I hope that you do just fine and look back on it in a number of years as a misfortune but not something that defined your life.

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@martinb, I was diagnosed in 1945, when I was 6. I have been type 1 for 77 years and I do not have any serious diabetes reated complications.
I have paid careful attention to my diabetes all those years, and I have been very fortunate.
With a good endocrinologist, and the present day diabetes devices that are available, you have an excellent chance of leading a very long and healthy life.

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Richard, you have talked about your unfortunate case of neuropathy. Do you not consider that a serious diabetic complication? I have a bit of neuropathy because of a statin, and I wouldn’t wish neuropathy on anyone. As a diabetic complication, I consider it a very serious one.

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Hi Marilyn, I have neuropathy that causes some numbness and poor balance in my feet and legs, but I had physical therapy. I learned exercises that keep me from falling down. I don’t need a cane or a walker. I am ok with that.
I also use a catheter for urination because of my neuropathic bladder, but that is working very well for me.
I do not consider my neuropathy serious at this stage.

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