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How would you best describe the daily burden of T1D? Please select 3 of the options below and share your own in the comments.
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Been injecting/infusing for so long, 50 years plus, it is my norm. It is a nuisance but better than the alternative of being in a box.
I no longer consider it to be a daily burden. After living with it in my body for almost 60 years it is what it is – a complex 24/7 self care duty. I do what I need to do to experience all the beauty and wonder that a satisfying life has to offer. And I give thanks everyday for the gift of life.
Xxx
57 years but now with CIQ – I would add “Daring” to Constant and Challenging
Ubiquitous. Always there. CGI helped my control significantly. But i think about my BG levels 15 or 20 times a day.
24/7/365 for the rest of your life. It’s a full time job you didn’t apply for, don’t get paid for with no time off from. Worse yet, you can’t quit. This constant crush can certainly lead to diabetes burnout.
Key positive word missing, innovative. I am waiting for newest closed loop system
Overwhelming
The first thing that came to mind was “life altering.” When I think about the many decisions in my life, my diabetes care always gets factored in. It’s not just diabetes, but other autoimmune issues as well. Such as, celiac disease, constantly factoring into my eating and social habits. It is a lifestyle that is often misunderstood by others who don’t have these limitations. Depending upon the circumstances, it is all of the word choices, except “impossible.”
(US-based) Expensive!
I checked all but impossible after not seeing the check 3 in the question. Managing with diabetes is not impossible but the daily burden is easily characterized by each of your other descriptors.
As Iāve said for many years it can only get better depending on your point of view. Itās truly what you make of it and fortunately for anyone whoās fairly name at the T1D lifestyle much easier to manage with the right open minded doctor and more importantly the right equipment. Got to love the recent advancements with CGM and infusion just a few more improvements and it will almost be like not being a diabetic, yea right for us living with diabetes as the old saying thereās two certainties in life death a taxes and for those with diabetes three the never ending need for insulin which equates to $$$$.
No burden at all. My diabetes has very little impact on my daily life anymore. I take 2-3 injections per day (often the same amount of insulin every day), which I compare to as much burden as brushing my teeth.
I eat good delicious food, exercise when I want to and have no other “classic” diabetic injuries. HbA1c in non-diabetic range.
T1D since 1981, keto/LCHF (<20 gr carb/day) since 2010.
Before 2010, my life was very much affected, with constant "highs and lows", early eye problems, 80% more insulin compared to today, eating-planning-fixing with the roller coaster bg values. So glad those days are gone…
Choices are incomplete. Challenges are minimal. Except for insulin made much easier with pumps and CGMs a little monitoring and adjusting for activity. Exercise and eating properly same as everyone else.
The 3 C’s: constant, challenging and complex best describe for me what the daily burden of T1D success is all about. I chose these over their synonyms because I’m optimistic and want to stay away from terms that connote failure because in spite of the constant, challenging and complex nature of T1D, we can do this, we are doing this, we are learning daily the nuance and variables of our T1D management and striving towards our success.
Perfection does not exist; stay positive, learn, move forward, REPEAT.
Nicely stated.
Nicely statutes. Staying positive is the key;)
Misunderstood
agree 100%
There is no est for the weary. It is a 24/7 never-ending problem. Even when you get to a good number it can spiral out of range in a heartbeat for no good reason.
I wish the question had been worded a bit differently, using “management” instead of “burden” so as not to prime respondents to answer from a negative bias.
When D management goes smoothly–no pump issues, blood glucose in range, adequate time to pre-bolus–then day-to-day management is just something I know I need to do. When I’m coping with post-exercise lows or unexplained highs, then taking care of my T1D can indeed feel burdensome or troublesome.
Never ending
exhausting
Burdensome and challenging were up there for me. I take it in stride since I have been doing this for close to 50 years, but it can be challenging since my day to day activities can change so figuring out how much insulin I may need is not always easy. Always having to check your blood sugar level to see if it is advisable to eat or exercise now or later. Knowing if you exercised enough during the day that I may have to change my pump setting for the night. Remembering to turn on and off the activity setting at the correct times when deciding I want to go for a walk. There are just so many variables in a life that affect how much insulin I may need. I am so thankful for pumps and cgms.
Very scary, I test positive for insulin antibodies. 7.4
Are you a diagnosed Type 1 diabetic or possible future 1? If you are not check out ways to help keep your beta cells functioning- no one path, good luck and best wishes.
I am always striving to do my best and that gets tiring at the worst of times. Iāve been eating one meal a day for a while and my blood sugars are much more in line- eating according to ada just made me slave to my insulin and I felt like beef being prepared for market.
I have never, ever, even considered T1D a burden. Who writes these daily questions? How to phrase a question 101 pops into my head. I am not discounting others who feel differently.
To me, it’s the blue balloon that I must keep in the air through my whole life at all times, no matter what I’m doing or thinking.
It’s the only life I’ve known. When I was 10 years old my pediatrician told me it would be like brushing my teeth. That was in 1960. I think about that every time I take my morning injection – LOL. I am grateful to still be enjoying life.
My husband has nailed this. He says diabetes is the math problem that never ends!
On some days all of these words could be used.
You sure set up a negative mindset by using the term daily burden. T1D actually saved my life! I was in a kidney study and due to frequent blood draws the staff noticed my rbcās were increasing. Long story short, I had a renal tumor (unrelated to T1D) that they thought was stage 4 but turned out to be stage 3a. Iām down one Kidney now but Iām still living my best life!
I was dxād while in my late 20ās in 1976. In my 45 years living with Type 1, Iāve concluded that the only āconstantā of Type 1 diabetes is that it will be variable. What works on one day, may not work the next. We need to monitor our BGs and adapt accordingly. The more knowledge we acquire about diabetes and how it affects us, the better prepared we become to take the needed actions to control and manage our disease. Luckily, the tools and technology we now have make that easier than it was 45 years ago. Iām not happy that I have diabetes but Iāve accepted my diagnosis, tried to learn as much as possible about it and am determined to make those lifestyle choices that may help me avoid its debilitating complications.
Why is this question so negative? I’ve never thought of T1D as a burden. Anyone can make anything a burden with an attitude like this. smh
The only burden is the US Pharma companies making it impossible for us to afford/obtain the one thing we need to live.
It’s certainly 24/7, but that’s ok. Been living with T1DM for 56 years. Still hiking, mountaineering, climbing and running. Denali 2023.
Challenging, complex, complicated: the big 3, as someone else mentioned. Thatās because of my personality type and how I view the world in general. ć Ķ”āāÆĶŹ Ķ”āć
However, unlike others, I invariably first read the answers trying to guess which question is being asked. I assumed the question was about the burden of navigating the American health care system. ć Ķ āāÆāØ Ķ āāÆć
Ahh Life, you stated ” … the burden of navigating the American health care system”
HAH!!! that encapsulates the most challenging, complex, complicated, and fearsome aspects of managing a life with T1D in today’s world.
I chose 24/7, constant, and challenging.
I need to pay attention constantly to my insulin and BG or it can go out of control. This may happen at times for unknown reasons, but as long as supplies are available my BG can be controlled.
This condition and it’s cause is understood, which I am very grateful for! It can be controlled. I would rather have T1D than so many other conditions if I had the choice.
I don’t consider T1D a burden. It’s simply a medical condition that my genes set me up for. The constant management of it isn’t a burden, either. What other chronic condition can be managed so closely? The ability to manage it at all is a gift that has prolonged my life, and the technology to facilitate that management has been steadily improving. But I also recognize that not everyone with T1D has access to that technology, and that needs to change!
I’m struck by the fact that all of your descriptors are negative, or at least border on negative. I guess that you could describe T1D as “relentless,” but I chose to use the “constant” choice. Even there, I am not focused on it every minute of the day. It is something that I have in the back of my mind most of the time, and use the data I have to manage my blood glucose level.
In addition, I’m wondering why you didn’t include descriptors such as “satisfying” or “feeling of accomplishment” in the list. I get positive feedback when I keep my glucose levels where I want them.
I agree with other that calling it a “daily burden” is not the best. The three answers I chose are challenging, complex and complicated. I don’t think anyone would disagree that Type 1 is any of those three. I can count my carbs to the gram but some days my bolus seems to be too little and other days too much. It could be complex because I ignored the fat & protein and focused only on the carbs. Complicated because I might be under a lot of stress, or due to hormones. So many factors make T1D challenging.
45 years ago I had a nervous breakdown and was told that it “burned out” my pancreas but for 20 years I could eat and drink whatever I wanted with one shot of NPH and one shot of regular….knew what my blood sugar was always without a test, never was ill from it in any way and had NO complications. Until I caught a Norovirus, was in ICU for three days and have been disregulated for the last6 years. The J&J vaccine caused my blood sugars to yo yo between 30 and 500 for 68 days. I have recov ered from that but still can only eat a very limited diet.
I would also say the seizures that comes from having too many lows and high. Unfortunately I am a uncontrolled diabetic and in the past 7 years have seizures from my disease.
Using a DIY Loop with Omnipod and Dexcom I selected Challenging because regardless of the mode of delivery, using insulin and trying to be a pancreas without the tools that a pancreas has is challenging but none of the other words worked. I would have used “routine”,
I use TSlim Control IQ which has definitely decreased the the. burden. But until we have at least a working cure diabetes is always there 24/7
there may be shades of difference, but it seems to me that “24/7, unrelenting, relentless, and perhaps constant are more or less synonymous. maybe constant has a little less emotional shading.
I donāt describe it as a burden at all. Itās just something I have always dealt with all my my since I was diagnosed as a diabetic at 9mos old. I donāt ever remember not having diabetes, so it is just a part of my everyday life. To me itās more like this is just normal. Not a burden at all.
My daily burden is my high and lows even with the cgm and always when I’m trying to do something like sewing it drives me crazy
Frustrating
The daily burden – nonexistent.
I was diagnosed at age 10 in 1984 and what can I say, nothing in the list made sense to me to select. My treatment is not perfect but it is automatic. Very little conscious thought to it most days. I donāt worry about numbers (carb counts, A1C, blood glucose) but pay attention to how my body feels and react accordingly. I sometimes think we are taught to get too caught up with the numbers and that driving for perfect is the only way to treat. Yes it can be annoying when low blood sugar happens at an inconvenient time or youāre trying to figure out how to carry snack/insulin with you when you donāt have a pocket and youāre not in the mood to bring a bag … thatās all minor stuff to me.
Exhausting
It’s the disease that never lets you forget it’s there. With better tools like glucometers and insulin pumps it’s come a long way. However, it’s always in the back of your mind, especially when eating.
Hum…… In reality I could have selected all the options that were provided. T1 is a disease you wake up with, live through the day with, and you go to bed with (not to mention the number of days during the week it interrupts your sleep and wakes you up to just remind you….. YOU HAVE DISABETES……) OK, crying over…, suck it up and get back to the battle š
Since I don’t feel my lows or highs it gets difficult the cgm goes of like all day having uncontrollable diabetes but I try to keep it manageable