This is a great question. I was diagnosed a little over two years ago, age 33. It was horrible, a huge new challenge, not just physically but mentally. But for even longer–now for a decade and a half–I’ve had another chronic problem, which is debilitating neck pain and muscle strain due to hypermobile Ehlers Danlos. it’s very difficult hold my head up, b/c it stresses my neck out so much. I would trade that for T1D in a heartbeat. And, like others have said, the more you go through life, the more you realize just how terrible people’s bodies can treat them with all sorts of horrible health issues. T1D is hard, it’s not fun, it’s not fair, but compared to many other things, if you have access to health care, supplies, and you have the time and resources to manage it well enough, it’s a walk in the park, comparatively speaking.
This is such an interesting question, and a difficult one to answer.
I was diagnosed at 10 years old. I do not remember what life was like before then. I do feel like it helped shape who I am today. The diagnoses forced me to learn about being “different”, about how to take care of my health, and be responsible at an early age. I am lucky enough to have supportive parents who made sure that I knew that I could still do anything I wanted to do. I don’t feel like I missed out on any formative moments that other kids experienced.
On the other hand, the burden of this disease is that, even with tech, you must think about it constantly. It can get difficult. Despite having decent (or, in the case of many on this forum, “excellent”) control, damage is still being done to the body. Many of us experience periods of depression. All of us experience highs and lows of varying degrees, and those can be exhausting.
So, is it the biggest challenge/misfortune in my life? I don’t know because I don’t know what my life would have been like without it. It’s just part of who I am.
T1D hasn’t been close to being the biggest challenge in my life.
I was 29 at the time I was diagnosed. I was already an adult used to coping with problems. I was used to the reality that people got sick and died from things that they couldn’t control. My father had T1D, diagnosed at the same age. Watching him suffer from 20 years of less medical technology and indifferent medical care was a living reminder of what it could do if it wasn’t controlled with the best tools available.
Once I had it I knew that I could have a great deal of control over how it could affect me - if I worked at it. So I made it my primary priority to learn how, with little professional guidance, just as I got through college and mastered my profession.
Overall, T1D has been one of the most predictable, consistent and reliable parts of my life, and the tools available for living with it have slowly and steadily improved. The commitment to acquire and maintain that control helped me learn to deal with more serious challenges.
Finding new jobs, getting and staying married to the same person, and helping raise our child were more challenging, and more rewarding.
Very optimistic indeed. Sounds like seeing you’re father have it gave you the optimism
No, I’m not an optimist. I’m a grimly determined pragmatist. I want control over my life. While diabetes has been frustrating at times it was never a major challenge to anything but getting private medical insurance. The ACA came too late.
I know that I can control many things in my life and I choose to focus on those. I know that my emotions are influenced by my ability to act. Even when I’m in flight or fight mode, I can choose how to respond - if I’m prepared. Hypoglycemia is one of those F-n situations.
Learning to live with diabetes is work, but you literally have a lifetime to do it. It’s a career where you learn to do a progression of jobs. If you commit to doing it, and use the resources that are available, you continue increase your abilties, until you experience diminishing returns.
It’s not like buying a house, losing a job, finding out you’re pregnant or sitting in a hopital waiting room while your spouse or child is being diagnosed. Those are stressful because of the immediacy and your lack of control.
I have a different attitude toward things than most people. I don’t believe in fortune, in luck. I believe in work. Anything that can be solved is a problem. Everything that happens has causes. “Trouble” is just a set of probems that hasn’t been clearly identified. A challenge is identifying those problems you care about and either preventing them from occuring or solving them.
Youtube “here’s my experience”, “here are my favorite x things” presentations often don’t solve problems, but confuse with irrelevant detail. Of course every person is different, but specific problems have specific solutions. What’s most useful is knowing how to choose the best solution and how to implement it. Everything tooks easier - once you know how to do it.
Everything I know and do about living with diabetes is the result of solving a problem and choosing to implement the solution. My biggest problem is ignorance. From what see in the forums that is everone’s biggest problem. I emphathize, but it took me years to learn what is available to anyone today with one careful Google search.
In retrospect, in 1977 my GP knew very little more than I did. If they knew more, they didn’t respect or trust me enough to share it. I was diagnised and treated like a car that was out of gas and needed a tuneup, one which would break down sooner than normal even if it was kept in tune with periodic tuneups. The Rx was to "Add so much gas per mile, and have a monthly inspection. Do as directed. "
This was before glucometers were available, long before the internet, when insulin and syringes weren’t covered by all insurance, but were OTC. Regular insulin in 1977 cost ~$125/vial in today’s dollars. I could afford it since I was single, only “needed” one vial per month and had a good job.
One and done (one shot a day) was simple. I went back to work thinking diabetes was no problem. But what the doctor told me to do, “take this, eat that and get a fasting blood test in a month” didn’t work, even though I followed it obsessively to the letter. One day I would feel great, the next I’d go hypo - eating and doing exactly the same things. It was a nagging problem, but one I could handle with emergency snacks.
I grew tired of my doctors disapproval and their try harder “advice”. I knew my day to day management wasn’t good. and monthly fasting glucose tests were useless. The problem was figuring out why. I tried adjusting my insulin slightly or weeks at a time, recording how I felt, looking for a pattern,
So I talked to my neighborhood pharmacist who also had type 1. He suggested that I split my NPH between two doses and try using Testape differently, before and between meals, and chart the results. I asked my doctir abiut doing this and recieved a frown. The pharmacist encouraged me to subscribe to Diabetes Forecast. That magazine was my gateway to learning about glucometers being used in California, and later to the new insulins.
Once I had a glucometer I could match my morning NPH dose to my fasting BG. I had rediscovered sliding scale. I mentioned it to my doctor and got a frown. My new problem was that It didn’t mnatter that it worked as much as it was not what he prescribed. The solution was not seeing that doctor.
That created a new problem- he was my GP. I didn’t get a replacement until after I had medical problems I couldn’t fix or live with. I’ve had many doctors since then, mostly specialists. I look to them for information and advice, not diabetes management.
I still see an endocrinologist now only because it’s necessary with my medical network to get a pump and CGM covered by Medicare. I’ve learned enough on my own that I’ve had better results from “old” insulin therapy than most persons with T1D they “treat” with the latest tech. I’m not smarter, just more determined to succeed.
If you want a productive challenge that I know that you can master, get a copy of the book “Think like a Pancreas” and work through it.
RPstud123 has hit the nail on the head. I have the same approach and philosophy, and I could have written the same. I was diagnosed 58 years ago, and had a family doc who did not know much more. In fact, when U100 replaced U40, he calculated the correction wrong - telling me to increase my dose 2.5X. I was in high school then, and realized I had to be in control, not the doctors, and not the disease. I had to be the strongest advocate for myself, and educate myself. Read, read, read. Learn biology, think like a pancreas (I got a Ph.D, in biology, and read up on diabetes). I am very fortunate to have started using a glucometer soon after Bernstein published his paper in 1980.
I was fortunate to have two great endocrinologist, one have seen for the past 28 years. He buys into the patient has to be in control to succeed.
I could go on and on, but a lot of what I have to say has been said by others.
Mike
D definitely ruined my life. It made me the basket case of my family. No point complaining about it, won’t make it any better!! I guess it could be worse!!
Looking back I’m happy that I didn’t have better doctors, that I had to take responsibilty for my own health and learn everything that I could.
If I hadn’t, I believe I’d be blind, limbless or dead already.
Because I did, I now understand AID better than my endocrinologist, better than Tandem and Dexcoms trainers and tech support. That’s after 45 year of being an enginer with diabetes and 3 months of self-education and experimentation with CGM and Tandem pumps. I have more experience than the professionals I need to prescribe the things I need.
My endo trusts an A1CNow fingerstick test over CGM data. Thye were alarmed that my A1C was under 6 with NO below range BG for 6 months. When the test didnot match the CGM data they assumed the Aic was right and reflexively wanted me to reduce my basal profile. Cointrol IQ just raised it back. That’s how low their good performance bar is set, how weak their understanding of A1C tests and Control IQ and it’s 110 mg/dL target and 112-120 mg/dL night control range is.
The doctors I use now are so specialized that they have become intellectually blind. They conduct tests in a way that illustrates the danger of confirmation bias. When something doesn’t match the “most likely” cause or their experience, they all give uo and try to attribute it to diabetes. I do ther research, read the NIH reports and journals that they should be reading, but don’t. I have to suggest that they didn’t consider what besides diabetes was more likely to cause the same result. I have to persuade them to do other referrals and tests when they reach dead ends.
That’s at an A -listed regional medical center. They are like people who misunderstood Yoda and just do things in their boxes, without trying or thinking outside them.
What gets me is that I’m not smarter than they are. I just care more about diabetes management, I work harder and I keep looking something that works better every day. If I weren’t too old I’d apply for a tech job with Bernstein or Joslin Clinic.
Unlike others, I’m lucky to have had a series of great endos but I was also well self-educated. My fitness and self-education led me to better doctors, not the other way around.
Although I agree with the mentality that one needs to be in control of one’s care, my medical reading and fitness, along with a strong drive for personal growth and development, and a bit of serendipity, led me to a great endo near my college, and because of his network from NYU to another endo when I moved toward NYC.
Along with my self-interest to improve, I’ve been lucky to have gotten away from mediocre medical care.
Actually people with high cholesterol live longer. At first it was found women over 60 with VERY HIGH cholesterol lived longest but was found it’s not only women but all people live longest with high cholesterol. You can look at the medical literature yourself and find out why this very dangerous myth was perpetrated about cholesterol and saturated fats for that matter, but it is absolutely false. Statistics was (criminaly?) used to turn a 1% benefit of a certain drug group into 36% for cholesterol and heart attacks. It turns out it was in fact the stickyness of clotting agents that causes heart attacks (hense why diabetes helps perpetuate it). So if this Bernstein was raising your cholesterol it may in fact be helping you. Either way if your treating yourself for high cholesterol you may wish to look into this matter.
Rocksta, I found the study that you are referring to and will have to do more reading about it.
At 59 1/2 my LDL was at 215, when I suddenly needed heart stents. I have to go by my own experiences, but will look further into the Danish study. I wasn’t taking a statin.
Good stuff Marilyn re the statin and of course following your own experience. The guy that got the entire ball rolling for statins and cholesterol as bad actually cherry picked data from a graph that had no correlation. At that time in the 80s there was some really dodgy characters doing shifty stuff, and it was really blatant, and as a result it’s hurt a lot of people. If your interested there’s some great expose talks (video) the unfolds it all and makes it easy to then look at all the studies and all the corruption, if you like I can post one for you to check out, I found it enlightening at the same time as jaw dropping.
Rocksta, I am going to say thanks but no thanks. I have been reading about the pros and cons of cholesterol and statins for years, and have come out on the side that I think cholesterol numbers are extremely important, and if I could take a statin I would considering my history. We are not going to agree, so I want to leave it at that.
It’s a proven fact that ldl cholesterol sticks to arteries. This causes blockages and arterial wall damage over time.
This is not one single study forged by one greedy person, it’s 75 years of many trials and experiments.I do think that too many people are prescribed statins when they don’t need them. I don’t take them because I have side effects. I tried several different ones and even a natural supplement finally I discovered that I could change my diet and my cholesterol including LDL are in normal range. That’s not true for everyone sometimes the drugs are worth the side effects sometimes not
While it took some time for me to get over the denial of the diagnosis at age 13, and while I would never say it is a blessing, I can say that I chose to live my life more on my own terms than I probably would have had I not been diagnosed. I live more fully aware of my body’s strengths and limitations. I chose to focus on a fulfilling career path. I learned to stand up for myself more, especially with medical professionals.
There is a double edged sword effect in joining support groups and loggin in to message boards like this when it comes to chronic disease.
People who die or suffer can have a big effect on the ones who are left behind
I didn’t get a choice to be diabetic and yes I think I am stronger because I fight it every day.
Still I wouldn’t wish it on anyone .
I used to go to a cancer support group. I was only 26. It was in person.
Many people there would talk about how cancer was a blessing and it makes us stronger and it makes us realize how precious life is.
But really you can’t hold that idea for your whole life, cause we have other stuff going on, like getting married and having kids and all that other stuff in life.of the 25-30 people in that group, only 2 of us are alive, of course we were the younger ones too.
I don’t need diabetes to make me stronger. I really don’t want it at all. But whatever happens in life, something worse could always hit us so yes be grateful we are living through, this, but I wouldn’t say be thankful for diabetes. No thanks
I do not believe that everything that doesn’t kill you makes you stronger, and I’d never wish any disease on anyone. But everything alive has challeges and everything alive dies. Humans are unique in that we have the ability to control so many things in our lives, including ourselves, the ways that we act and what we think- if we chose to.
I think that I’d be less happy with who I am, and less happy to be alive, and less motivated to keep growing, if I couldn’t appreciate having survived challenges in my life.
Challenges are what makes each life unique, and interesting if not pleasant. Without challeges to test us we can’t know what we are capable of, we’d lack external incentives to grow and we wouldn’t have the perspective to appreciate what we have as much as we do.
So while I’d rather not have diabetes at all, I’d rather have it now than two hundred years ago, or have a different disease that is not understood, or one that can’t be simply managed. I’m greatful to be aware that and how my body is failing so I set priorities on what I do and pay attention to what I experience while I can. If this is the only life I have, I don’t want to waste it.
No, it was not the biggest challenge in my life, but it created a lot of additional stress and strain from the challenges already present in my life.
I think it would’ve been much easier for me if I had been diagnosed with type 1 diabetes in my 30s or 40s rather than in my formative years.
What things in your life do you consider worst than T1D?
Cancer is worse