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If you’ve lived with T1D for 20 years or longer, how would you describe the difficulties or challenges you've experienced with T1D over the years? Please pick the statement that best fits your experiences (even if it's not a perfect fit). If you’re comfortable, please share more about your experiences in the comments.
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Managing my T1D has become easier over the years. Partly because of more experience, but even bigger reason is the technology we now have, especially CGM.
I was diagnosed in 1987 and I’d say that while I still have some times that are challenging, it has overall been easier. Better insulin available, pumps + CGMs, better BG meters, better understanding of TIR all help.
I’d love to understand WHAT/WHY causes the changes in insulin needs in my body day to day. Stress, types of foods, activities are the “usual” suspects, but how does it happen when no clear reason appears?!!!
Ain’t that the truth. I think of it this way. There are many factors going into this moment’s blood sugar level, and I am aware of only some of them. That means there are always several wild card contributions that are outside my awareness. I can only deal with the ones I see, and forgive myself for the ones I can’t see.
It’s gotten more difficult for me to control over the years. You’d think it would be the opposite but when I was first diagnosed 42 years ago it was much easier, even if it was urine testing and Regular and NPH twice a day.
I’ve only had T1D for twenty-one years, but it feels easier to manage with current resources that seem to be improving. Highs and lows caused by unknown stresses or digestive issues can now be controlled much better than before.
I am ever grateful for how much it is understood in comparison to any neurological condition.
Technically, it was easiest when I was a child and my parents did all the worrying and insulin/food management for me. Ignoring the first 12 years, I found it much easier when I was in college than I do now. I had a routine that worked with my body clock. Now, the nature of my work makes sticking to a routine very difficult. I’ve been struggling to identify patterns and establish appropriate insulin ratios for different times of day.
I feel that it waxes and wanes depending on my mental state. There are times of burnout and but most of the time I am engaged and capable. Though even during periods of burnout I do not let my A1C go above 7 or my time in range to fall below 70.
It is not that I hav managed better over time, it is diabetic technology has improved allowing better diabetic control!
The upside : all the new tech and faster insulins!
The downside : insulin resistance as I age.
Still way way easier than when I was on MDI, and I maintain control with overall ease comparatively too. Haven’t had a ER visit or 911 call since switching from MDI in 2007! I’ll call that a major success!
I have had diabetes for almost 66 years (minus one week). I have found things are easier now than in the past due to technology we have available. I hope there will be improvements in the technology before too much longer.
Older age in general comes with more challenges, and it seems for me that diabetes is the same in spite of many technologies in use now that were not available when I was first diagnosed.
less worrisome with Control IQ, and I know more every year. Its definitely a challenge but I have been given the abilities to deal with it pretty well due to much privilege – education, housing, family support, and jobs I can control somewhat.
Jan 24th 1965 was the day I was diagnosed. Only glass/steel syringes existed and inch long needles. First glucometer in 1978, big as a casette player, if anyone remembers those. So technology has truly improved and made life easier.
Absolutely! I was diagnosed in 1960
Totally remember the casette player glucometer!!! And, it took… was it 5 minutes? to get an answer back. Plus, the wiping and the this direction and that direction.
Oh goodness, I had forgotten about that!
So happy to see another glass syringe user! I went back to live in the UK in the early 80’s .. and NHS had us using glass syringes! After having lived with plastic syringes in Canada for almost 30 years .. it was quite the shock. My Dad actually sent me ONE package of BD syringes as a Xmas gift the first year . ROFLMAO . I’m so happy we no longer use that system and the 4mm 33 gauge pen needles .. sweet! And yes, technology is awesome .. if you can afford it. Some of us can’t get insurance coverage so it can be like standing in front of a candy shop window .. and drooling away.
I said easier, because of the technology we have now. When I was first diagnosed it was needles and sneaking shots when I needed them. I used to have a lot of low Blood sugars but with a CGM and a cordless pump the lows are not as frequent. Now I can go swimming without putting on special equipment to keep my pump from getting wet. I can wear dresses again because I don’t have to have a place to clip my pump on. I don’t have to worry about having enough test strips to check my blood sugar 15 times a day. A small continuous glucose monitor tells me and my loved ones what my Blood Sugar is. Now if Omnipod would get the Android 13 phones on their compatible list I would be able to only carry my phone to have the convenience of my closed loop system.
I am so grateful for the advancement in technology to take care of T1D. I agree with those who feel it is more difficult the longer you have it but I feel it’s just the aging process that makes it more challenging the longer we live with it.
Oops, I hit the wrong button and then finish. I only started on the closed loop system in September and it has made a world of difference for me
Wow! What a question. I answered, “managing T1D waxes and wanes “. However my real answer is “all of the above.”
In the beginning (1977), managing diabetes was a crap shoot. Urine tests were useless information because they told me what my Blood Glucose was hours ago. The insulin I used was Regular and NPH (pork). I found the NPH caused me to have VERY extended low BG’s (like all day long). Basically, it was like flying blindfolded.
Blood tests came along, and improved things, because it took off the blindfold, for part of the times. But, I was still flying a four-wing bi-plane.
Then, insulin pumps came along, and gradually improved. The pump was a life changing event for me.
Then Continuous Glucose Monitoring systems. Now I know where I am all the time. Now with Control IQ, I can sleep through most nights.
However, other autoimmune diseases have complicated the control of diabetes; gastroparesis, celiac disease, hypothyroid, asthma, allergies, gastrointestinal disorders, etc, etc, etc. And, I’m not even getting into the time I spend dealing with insurance companies, Durable Medical Equipment companies and pharmacies. Ugh!
So, now control is difficult in many other ways. It “waxes and wanes.”
I was also diagnosed in 1977 so I went through the same path. I also picked “waxes and wanes”. In some ways, the early days weren’t as difficult because we didn’t know anything about what
was happening, except those awful lows. All the technology is wonderful but it can also be overwhelming. As people have said, it’s a full time job.
Yes, I agree.
The technology has changed as have the challenges!
The technology is so much better than it was when I first got T1D in 1979. Then there was urine testing and 1 NPH shot per day. Now I have a closed loop systems with continuous blood sugar monitoring and insulin pumps. Before I got my first insulin 30+ years ago, I was having a major hypoglycemic event, often needing external help, about once a month. Since then, I haven’t had any that I couldn’t handle myself. When I first started, I felt major guilt when things were off track. Now I’m aware that I have made hundreds of thousands of little decisions based on managing diabetes. Some weren’t good, but many many were. So I give myself some slack when I am out of range.
Before I got my first insulin pump, I meant. Should have proofread before submitting.
Yesterday I made the mistake of taking 10 units of insulin instead of the right amount for 10 grams of carbohydrates. I managed to keep ahead of the insulin by eating and eating. But it reminded me that it’s still necessary to pay attention!
The biggest, most important change for me has been having a cgm. 20 years without a cgm meant roller coasters I couldn’t see to manage. I still have them on some days but I don’t live with them constantly. Algorithms have helped but I am still learning the one I am on as it is new to me. I also look forward to the next advancements and improvements as realistically because of age I have probably passed the cure possibility. Happy to be alive:)
Over the last 35 years, managing my diabetes has become much easier in most ways, but harder in others. For example, the technology and insulin are more advanced which is awesome. But there are still obstacles/difficulties like increased cost and battles with insurance.
I totally agree. Cost and battles with insurance are a real struggle.
I marked ‘waxes and wanes” because sometimes technology fails. I am having constant struggles with my sensor failing. I also struggle with some highs I don’t understand. However, the advance in technology was a life-saver for me!
Back in the 1960’s, there wasn’t much to do as far as management was concerned. Moreover, my physiology was more forgiving. (Perhaps I still has some residual insulin;-producing cells –not enough to eliminate the need for shots, but maybe provide C-peptide or a tiny bit of background/basal during the NPH years.) Good control consisted of not getting into trouble with lows.
By the time blood glucose monitors arrived, it seemed that my body could not tolerate the broad ranges of “not being too low” and I don’t know how I could have survived without the closer surveillance. I find it hard to believe that I had managed backpacking in the Tetons in the days of urine testing. But I was young and somehow my body was more resilient.
All the new technologies have made it possible for the 1st time to get closer to a normal blood glucose profile. I am grateful. But near normal just doesn’t seem good enough anymore to keep healthy, and keep heart disease, etc. at bay. These days there is so much more to do in order to manage. I do it gladly, but I currently feel like I am barely keeping pace. I guess that is what life and aging is all about.
So, yeah, I love all the new tech, but life isn’t exactly easier.
I ditto your answer cynthia jaworski! 🙂
You are another person I totally agree with. I’m amazed I have survived considering some of the things I did when I was younger. We were most definitely more resilient . I’m happy though that I’ve mostly led a very normal life apart from the diabetes.
Between my own experience and improved technology, things are definitely better now. I spent the first year after my diagnosis observing the effects of everything I did or ate on my BG. I learned to cook and established a regular exercise routine. After watching my reactions to a wide range of meals and activities, I became pretty confident that I could avoid BG extremes and return to living my life. For that first year, I was so obsessed with managing my disease that I was afraid I’d never be able to use my mind or energy on anything else. When I meet a newly diagnosed diabetic, I promise them that things will get better.
Questionnaires have theor inadequacies. I chose answer 2. I was too young at time of dx to remember much about management. I’d say difficulty & ease of management wax & wane without any reference to time of dx. Besides compared to today the discovery of knowledge for management was in its infancy.
Dx’d in 1983 (age 28). Went from R/N regimen and color-matching test strips through to CGM and AID pumping. Of all the changes, the single most life changing for me was the introduction of the analog insulins after being on R/N for 20 yrs. This was huge b/c it meant you no longer had to organize your life around your insulin but could tailor your insulin to your daily life. People dx’d in the last 20 yrs largely have no idea how restrictive it used to be, taking insulin that would kick in HOURS later and never being exactly sure when or exactly how many carbs you needed to consume when it did. Carb counting wasn’t a thing because the insulin wasn’t up to it. We had this “exchange diet” system that was kind of a joke. And When the stuff hit, you’d better be ready for it or it meant a visit from EMT’s. I used to call it the Eat Now Or DIE! regimen. Being unshackled from that stuff was more life changing for me than going on a pump later on. Only other thing that compares is CGM. If we’d had that back in the day it would have made even the old R/N regimen MUCH easier to deal with. Finger pokes give you a still photo with no before or after, whereas CGM is like watching the movie. I’d give up my pump far sooner than give up my CGM if it ever came to a choice.
Dx’ed in 1956. Having a pump and CGM and Comtrol IQ has taken some of the load off of daily management. The complications are another story. They are mostly annoying.
I struggle with concisely answering. Health is a very piebald pony.
Technological, scientific, and medical developments, would tend to suggest a positive answer. Advances in age tend to suggest negative answers, as many of you can readily recognize when you age beyond your “Best if used by” date.
The age-driven challenges – severe arthritis, joints that inflame, parts that fail to function, vestibular instability, and a myriad of others – mount up over time while that infernal and eternal T1D hangs on like the noisy hitch-hiker that never goes away and continually tells you what a bad driver you are. C’mon man! We’re doin’ the best we can.
From dx in April, 1955 to today there have been tremendous tech advancements in glucose management. My ability to access and utilize those advancements has depended on insurance coverage and my financial situation, factors that have made life very challenging at times. Over the past two years I’ve had a tremendous weight lifted from my shoulders with the use of a CGM and Tandem infusion pump with CIQ app. Now, because of changing life events that will soon be ending and I will be returning to use of MDI and a glucose meter. Life continues.
So sorry you will be returning to MDI and glucose meter since you seem to really like having the pump and CGM
In Sweden I have never paid a penny for insulin, test material or anything else I have needed. No battle with insurance company like here.
The main reason it has gotten easier for me now versus years ago (since 1968) is progress in technology and therapy. Fingersticks, then pumps, then better pumps, then better insulins, then CGM, then closed loop pumps… night and day, though still can be challenging.
Hobbling up on 70 years (and not really hobbling. It’s more like just walking a lot more carefully, thanks to neuropathy.) It’s been a trip! Not sure which came first, the diabetes or my love for a challenge, but being able to live a relatively normal life has been the long-term goal. I’m extremely grateful for the closed-loop, while at the same time befuddled because there still isn’t a cure. Blaming big pharma just seems too easy, and so far, it hasn’t achieved the results we so hope for.
I believe everyone has challenges to getting through life. The one I would most like to see go away, is the one that puts unnecessary hoops between us and the care we need to exercise each and every day to stay alive. Enough with all the silly regulations that medicare imposes! Keep us safe! But don’t cramp our style! I’d like to enjoy being almost 85 years old.
Diagnosed in 1987, hypoglycemia unawareness was my biggest challenge. Thanks to Dexcom and my Tandem pump it’s now much easier. I have good days and bad days but know, and am very grateful, that I continue to learn each and every day about living with T1D and navigating each challenge, trying hard to stay positive and healthy.
I’ve got to admit over that when I was first diagnosed with T1D 49 years ago I didn’t find it that difficult. That said when your 13 years of age nothing seemed to bother plus my older brother had T1D for 7 years before I was diagnosed so I was familiar with the condition. I can’t believe I’m going to say this but I enjoyed following in my brothers footsteps and it didn’t seem to faze me. Now a days though with the technology we have I find it unfortunately it tad bit more frustrating and stressful. We see everything unfold before our eyes with the CGMs, pumps the alarms and alerts etc……. It can be extremely as mentioned stressful and frustrating. I never ever felt that way 20 some years ago, yes I love the technology but it definitely needs to be improved on to a point where it’s a no brainer, I know it’s coming and I’m anxiously awaiting so I can return to a life of near normality. I didn’t reread this so please excuse any grammatical errors. Cheers……
I agree, Ken Raiche!
The more you take me and my decisions out of the equation, the better my blood sugars will be! 🙂
Well said. I agree with you!
I agree with you on all you said Ken .. I couldn’t have put it any better!
The biggest challenge that has gotten more difficult over the years is getting the drugs and supplies that I need to use to stay alive and be as healthy as I can be. From battling insurance, suppliers, and manufacturers, to the ill informed medical professionals.
So great to see how many of us here have similar stories! I’ve lived with type one since 1976, and I’d say that overall my experience with it has gotten easier. The last 10 years using a CGM has been such a life changing experience. And the Tandem pump with CIQ as well. I’m very lucky to be able to afford these tools, along with access to good food and generally less stress the older I get… So far at least!
I NEVER received the foundational and mandatory psychology tools to handle the challenges of T1. It’s been far, far longer than two decades…
I can do the death/dismemberment/gangrene lectures far far better than any doctor. But they summarily failed to ever address the subtle or long term mental stuff a chronic illness provides
Me, too, Jeff Balbirnie!
I’m thinking it just wasn’t understood as much as today.
As I 5-year-old, I was essentially left in a hospital for a month without my parents. But, the long-term effects of that trauma were never dealt with (until recently). Then, the doctors I had until I was 29 always acted like I was the problem, not my body being the problem.
So, that is just to say, I get it! I understand and second your post.
51 years under my belt, I would describe the early years as “easy” but not as healthy. (As others have described, not a lot of useful home testing and the Regular / NPH beef and port insulins didn’t leave any margin for eating times.) Lows and highs were harder to predict and deal with.
But, as more technology becomes available, I find I am frequently overwhelmed with the amount of data and having to make so many decisions on what to do with it. When you add in carb / fiber / fat / protein counting, my brain tends to want to explode.
But, it is a healthier system and I know I have benefitted from the technology. The CGM and insulin pumps are tremendous… If I could get my insurance on board with an AID system, I’d be a happier camper.
Another downside of now is that things are so expensive. I remember going into a pharmacy for an emergency bottle of insulin that cost $10.
But, a few years ago (4 or 5), I had to purchase insulin without insurance because of my cats and it cost $350 or so… crazy expensive!
Some great responses below! Thank you!
Try $ 1.25 when I started 70 years ago !!!
Yes, indeed, sweetcharlie!!
Thank you for your posts! 😀
Having a pump and CGM have definitely made living with diabetes easier. I lived without either for 46 years and having a few major lows back then was the pits. Exercising is still a little bit of a struggle as my sugars can go low even when having “activity/exercise mode” on and a lower basal rate set, but with a CGM, the lows are not nearly as low as before. I tend to go high after exercising, but once again, having a CGM lets me know to bolus when that happens.
Coming up on 49 years with T1D. As I mentioned in another post, managing this process is ever changing. There are good days, bad days, good sites, bad sites, good absorption, bad absorption. On the pump, mix pump and injection, MDI only. I don’t know that longevity with this condition makes it any easier to manage.
Agree! Most days are okay but the days that I have problems with finding a “good “ spot can be frustrating! 42 yrs T1d
I’m coming up on 49 years with T1D as well. We should talk!
I soooo agree. The new stuff is great BUT none of it is perfect and can make things more complicated some days. Going on 63 years of “fun” .
Becky and Jan, see my answer..
It’s hard to say. My childhood endo kept me running high rather than trying to keep my blood sugars tightly managed. I feel like he neglected my care in this way and now I am teaching myself how to tighten my numbers with the new, amazing technology while still going through literal highs and lows that can be difficult to manage. I wonder if it’s difficult because of how my blood sugars ran as a kid when I did not think of my blood sugar as often as I do. However, I feel like I’m getting the hang of it especially with all of the available information to help us manage better.
Most with T1D experience the ups and downs of the condition. You can aim to contain it – never totally control it, as it changes throughout the days/weeks/years…. You just need to be aware and react accordingly.
When first diagnosed 46 years ago, the only tool available at home was a urine test strip. Then, finally, a home blood test kit came out (expensive, big, cumbersome, and time consuming).
With all the new advances, between faster blood test strips, CGMs and Insulin pumps – being aware and reacting accordingly to changes that occur is so much easier.
So, it’s not so much how long I’ve been T1D, but more it is the tools now available to better self manage.
I’ve had diabetes for almost 60 years now, and the fact that it has become easier has a direct relationship to the improvement of the technology. In 1980 things became a whole lot easier with Home Glucose Monitoring, even though it was pretty clunky then. But at least I could find out what my BG was. The latest tech is Continuous Glucose Monitoring, which makes it easier than ever.
Bob, I have used the CGM for the last 2 years out of 70 years T1D.. Please keep a check on the CGM with finger sticking and Lab tests !!!!
I was diagnosed at age 2. When i was 18 years old, i started seeing a new endocrine who taught me how to take better control of my diabetes. Since then, I haven’t thought of diabetes as difficult. Yes, there have been times when my control wasn’t as good as I’d like it to be, but more often than not this has been because of my own neglect – – easily fixed!
More to the point of this question, the most difficult time for me was when my hormones started changing due to menopause. I did not know what to do. My hormones were fluctuating as were my blood sugars. Everyday was a new adventure! I asked the endo I was seeing what to do (not the same one mentioned above – – I had moved) and he said I should ask my gynecologist. I asked and was told that the changes from menopause shouldn’t have any effect on my blood sugars. Time to find new doctors!!
Thankfully, my blood sugars seem to have leveled out (and my hormones?). It was a very trying time though, due to a lack of good medical care in my area.
I feel that managing T1D has become easier the more time I’ve lived with it but largely due to improvements in the technology that has made managing my T1D simpler. My insulin is faster acting, my pump basal rate auto adjusts according to my CGM BG trends. My glucagon (baqsimi) is now in a nasal spray providing convenience and ease of use. Sure there are still those times when technology fails us but we’re still here, still learning and still proving that perfection does not exist.
Be kind to yourself. #BeWell
I’m still a baby in my almost 24 years. With a CGM and pump things are a little simpler but my goals are intensified. So compared to 20 years the care is easier, but with tighter goals still work. It’s folks like Bob (Fisk) and Janis (Senungetuk) that makes me feel lucky never using archaic tools (started with disposable syringes and a meter) now with a CGM and pump I’d feel foolish not to try for closer to normal diabetic control. Thus control can be simpler the longer I’m diagnosed, but the goal post is moved.
I call the “early days” (I was diagnosed in the 1960’s) the Ice Ages. In away, glad to know that we all made it to this point with grit and determination. From glass syringes, 18 gauge needles that you sharpen on a stone, plop plop fizz fizz for urine testing 😂.. all good in my little world of advocacy.
After more than fifty years I’m still learning! At times I manage well, then at other times I’m taken by surprise. But CGM use does massively assist. At least I can now see, much more quickly, when my bg goes off
“The difficulty of managing T1D waxes and wanes – some times are more difficult” It’s a different world diabetes-wise than it was even ten years ago, and technology has made it sooo much easier to manage the disease. But really it still feels like a massive burden to me, even using an automated delivery system. I think I’ll continue to feel very frustrated with the unpredictability of my bloodsugars until there’s a cure or something closer to it than a closed-loop system.
For me, the key is to keep learning new techniques to optimize blood sugar control. After struggling for 13 years with T1 and deteriorating health, I had to take matters into my own hands – not relying on technology (pumping made me lazy) – but really dialing into the correct basal rate, how to bolus precisely and predictably for food, how to correct to a set blood sugar target, etc. T1D is so much easier for me now because it’s more predictable. There are always new techniques to learn, though. It’s a fun and exciting process to learn more about hacking our own health to optimize outcomes!
After 55 years, 39 years on a pump and 11 years on a CGMS and at least 3,000 shots. There is no Vergin spots left. So, managing T1D just continues to get more intense. Especially every set change. With that, it normally requires Besel changes. As my old Endo. said, wait one day for the site to establish absorption, then make the changes. But that one-day sometime the glucose goes crazy.
Tandem Control IQ helps, but it is slow to respond to high numbers.
After 58+ years it still “waxes and wanes” but since Dexcom and Tandem it is like I’ve found my Cure!
Tech has made things much more manageable for sure. Burnout still happens, and I think it is often overlooked when sighting how great the tech has gotten. Developing healthy coping strategies in my mid 20’s saved my life and has been far more beneficial to my diabetes management than anything else. If you are young person with diabetes, an old person telling you how good you have it with your AID is not helpful. I have been T1 for 30 years now and even back when it was NPH and Regular the biggest barrier to care was myself.
WOW!!!!! MMy answwer was “other”.. In the past on this site I many times I used to say “we are not all the same, but we are not all different”…. BUT, unless I missed it, I am different!!! T1D at age 20, age now almost 91…. In 1952 I mixed my own ratios of NPH and R made from Pigs and cows… Then came the DNA humin stuff along with the $$$ increase. So I tried MDI “not good for me”.. Then 70/30 once a day and for a while twice a day [no advantage]. Then Lantus once a day.. Then Walmarts Novolin 70/30 because of price and it worked the same for me. Now going to start the Humalin Pen since it is under the $35 a month rule and I have trouble reading the syringe because of AMD [not T1D related]. Started using Dexcom G6 2 years ago… past 6 months it has been way off from finger and Lab tests.. In the early days and now T1D was just another part of life that I had to deal with.. Now I am dealing with Asbestos related Lung cancer..