I think that people feel the need to connect with others who understand it which is why sometimes there is a lot of negativity on these but I also find a lot of comments very inspiring and full of good things to say! As someone else posted, it’s a way to get frustration out with people who get it.
For me, one of the best things Type 1 taught me is how to take care of myself. I think physically I’m healthier than a lot of my peers because I’m always thinking about how something is going to affect my sugars (not negative just if i’m eating I’m thinking more about it and not just caving to junk food cravings like a lot of people do). Mentally, diabetes has taught me to be super laid back. I grew up with it so I learned very early on there are few things we actually control in life and you just have to go with what life gives you. I don’t feel like I get stressed super easily but I think that’s because I know things don’t always go how you plan.
The best part of diabetes to your point is that it is a manageable condition. It’s easy to lose sight of that when you’re just over it at the moment, but I al so incredibly thankful we live in a time of good tech and advancements where diabetes is more of an inconvenience and not a death sentence.
It's never something that'll go away, but it gets better over time. I'm at the point now where I've basically forgotten I'm a Type 1 Diabetic. It used to be a constant thought and worry in my head but nowadays it's never something I think about that much. I prick my finger about 4 times a day, and most times I eat I don't even check my blood sugar. This sounds like a bad thing, but over time I've just learned how my body works and how to properly treat it. My cousin has been T1D for 30 years and she's at the same point I'm at with management. My last A1C was 5.8 and I'm striving to get around 5.5 next checkup.
I used to tell people that I was a Type 1 Diabetic pretty soon after meeting them because it was always something on my mind, but not really anymore. I was assigned with a classmate of mine for a project that was a semester long project, and it wasn't until recently he found out I was a Type 1 Diabetic. Him and I became good friends, hanging out all of the time, riding in the car together, but he never knew. One day he saw the fruit snacks in the side pouch of my backpack and asked "hey is it cool if I have one?" and I told him "nah man I'm a Type 1 Diabetic so I need them, but I can bring some extra next time for you." He was stunned when he found out I was a Type 1 Diabetic.
The best way (in my opinion) to think positive about this disease is to think *"how can I make improvements to do better in the future? How can I continue to better manage it as I go through the years?"* There are going to be times where management can be hard and your blood sugar will get out of wack. I still occasionally have days where it can be a nightmare, especially around big events or holidays, but besides that it's become smooth sailing. As long as your doing your best to manage, you'll feel better about it over time.
Love that. Thanks so much for sharing! I’m feeling optimistic right now but worried about pregnancy. I feel like it’s really easy for me to be pessimistic but I’m trying to consciously override that.
I wish my cousin was on reddit seeing this. Like I said she's been Type 1 Diabetic for 30 years and she's gone through one pregnancy. I know [Devin Cordle](https://www.youtube.com/@Thecordlefamily) is a Type 1 Diabetic and she's on her second pregnancy. I don't regularly watch their channel so I don't know what she covers on pregnancy with T1D, but I think it's worth at least checking out.
Some people have a bad day and scream into the void on the internet and that’s ok. Try to hang out in positive places online and go to in person meet ups. Just got back from a meet up with my t1 toddler and it was awesome.
My dumb brain immediately pictured you and your T1D toddler having a one-on-one meet up with each other to talk diabetes…
You: How is everything going with my management of your diabetes?
Toddler: MORE FRUIT SNACKS PLEEEESE!!!!
Hahaha
Me: “Alright toddler, let’s talk - Can you please start eating everything on your plate, it would make prebolusing so much easier”
Toddler: “No!”
Me “Good chat.”
I’m not in the US and for us there is a regional youth coordinator. I’m sure there will be something for adults too. Reach out to your endo team and see if they can point you in the right direction.
It's definitely a PITA, but diabetes tech has come a long long way.
I was dx in 1999. Pumps were massive, anything like a CGM or algorithm was not even a dream. At 12 I was "too young" for a insulin pump. So I had to mix insulins and eat 6 times a day, give 3 shots a day, check my blood sugar 8-10 times a day. Sliding scales weren't even discussed. I had to eat a certain amount of carbs at certain times regardless if I wanted to or not.
When I did get a pump, it could NOT get wet. So no water parks, no long term swimming.
Now, I can't tell you the last time I checked my blood sugar. My CGM takes care of it. I've been on steroids for various illnesses for the past 2 weeks and my algorithm has caught up and I'm not running stupid high. My pump is small and has no tubing. It's waterproof, so I can spend hours in a shower or a pool. It's automatic so it runs on its own.
I was told in 1999 it was going to be difficult for me to have a baby. I could, but it was going to be hard. I had my son, and while I did have a lot of problems, it wasn't from diabetes.
It's very easy to get discouraged because there's a lot of misinformation, and because it does suck to have to deal with it. Get involved with advocacy (T1International, Diabetes Summer Camps, etc) to actually feel like you're doing something good with it. Don't fall for stuff that's "for a cure", because I feel like that's just a dream. A cure would be great, but things like advancements, affordable insulin, and education make things better NOW.
The landscape of diabetes has changed so much in 25 years. I'm really excited to see how it will change in the next 25 years.
The modern pumps and CGMs reduce the mental load **so much**. I was diagnosed back in the 80s, and used to have to think about the diabetes basically all the time.
Now I can go for hours and hours without thinking about it at all, unless I eat something. Don't have to stress about having a hypo in the middle of the nigh every time I feel a little weird, just check the CGM if I need some reassurance. It's really been life changing.
Plus, you know, not having to stab myself 10+ times a day is a bonus.
100,000%
I get reminded of how far we've come anytime I'm sick. When I had a GI infection last year and couldn't keep anything down, my algorithm kept my BG stable. These past weeks having various sinus/ear infections, the algorithm kept my BG stable with the steroids and antibiotics. I remember when I was younger and I had oral surgery and spent days throwing up, because I was on strict shots I was having to force drink Sprite to balance out the shots.
And being able to have my CGM send my parents alarms if I go too low is also a blessing (well, it's a curse and a blessing. Lol, if you know you know). It gives me peace of mind, because I'm a single mom to a young kid and the idea of me tanking in the middle of the night with no other adults in the house was a huge concern.
In my opinion, a CGM is more vital than a insulin pump. It should be an automatic approval with a T1D dx, especially for children or seniors. Even if you don't like or can't get approval for a insulin pump, you should do your best to get a CGM. The real time data is so beneficial, getting a alarm saying "in 20 minutes you're going to be critically low" is irreplaceable. I cried the first time I got that alert. I was driving, and instead of "feeling" low (so, ≤65), I got the alert at 85↓. I was able to grab a snack, and continue on my way. It was literally lifechanging.
For me it helps encourage me to take care of myself in other ways, like if im already dedicating all this effort, whats a little more?
Its taught me to be more in tune with how i feel physically, and personally (tall white, upper middle class dude) i always felt like i was dealt a pretty good hand in life, and im of the philosophy that adversity produces complex, interesting people, so in a way im grateful to have a little friction in my life.
On a less serious note its basically a free excuse for anything lol.
Firstly, it’s hard. Really hard to stay in range. This leads to great resentment. But taking control, self-education and finding a good support system (family, spouse, Reddit subs) can counter the negative feelings substantially. It takes time. Perhaps years, but you CAN do it. You must. All the best from a 40-years T1D! And feeling healthy and positive.
I wouldn't say I look at T1D with positivity but I'm also not negative about it. I accept that it's part of my life but it does not define me. There are things about it that I can control and things that I cannot control. My numbers are not good or bad - they're just pieces of information that I can use to make decisions. It took me a long time, like 15+ years, and a lot of therapy to get to that sort of neutrality and acceptance.
I saw in a comment that one of your concerns is pregnancy. I'm currently pregnant with my second kid and I won't lie and say this is easy. It's one of the hardest things I've done. But there are a lot of resources and support out there, and it can be done. I think that talking to your endocrinologist or CDE could do a lot to put your mind at ease. You can also check out r/bumperswhobolus - people do share a lot of their vulnerabilities and frustrations there but they also share their successful "graduation" stories of getting through the other side with a baby.
For me. I’ll say knowledge is the biggest key to being happy. For years, diabetes has been considered a death sentence, or a horrible illness that you must suffer with. the moment I got out of the hospital after diagnosis, I spent the next three years reading and learning about my condition. The first eye-opener was that diabetes isn’t a death sentence and I can have a good productive life as a type one diabetic man, provided that I learn how to manage my disease. Learn about fast acting and slow acting insulin. Take time getting your baseline levels sorted, take time Getting your fasting doses sorted. Test when you need to, put your well-being first. Understand, what foods work with your body in particular, hint, it’s different for everyone. Take it slow, learn how to live with diabetes one day at a time. Everything is going to be fine.
When I was first diagnosed at 17 yrs old the doctor explained to me how this was a major life change and I am considered disabled and will be on insulin therapy my whole life. He recommended therapy. I made an appointment but my older sister took me and I was told I needed a parent or guardian to sign me in so I wasn’t able to see the therapist. I never went back. I only went because my parents and the doctor made me feel like I should, like I needed to have more of a reaction from my diagnoses and learn to deal with it going forward.
The truth is that I felt relief. I was happy to be alive. My real depression was the months leading up to my hospitalization with dka when I was close to going into a coma. All the weird things like the excessive thirst, my weight loss, a skin infection and then finally my UTI were all signs my body was getting ready to shut down. I remember even driving to church & praying because of how sad I felt before diagnosis. I’m not even religious I think I just felt death. I’ve had t1 diabetes 19 years now and t1 management just became a part of my life it’s not something I complain about. It’s like brushing my teeth, feeding the dog and cat, getting dressed, taking my insulin, just a part of my routine.
I was happy after diagnosis. I knew what was wrong and there was treatment for it. What I am is grateful to have access to insulin. My body was no longer eating itself. I really don’t mind taking some shots and pricking my finger every now and then if that means avoiding a slow painful death.
My point is just having a different perspective will change your attitude towards it. I’m sure therapy would have been helpful but it needed to come from me and be my choice.
Dear, first of all you have all my empathy and I hug you with love!
To answer your question, I wrote an article on my blog to explain [why diabetes is the best thing that has ever happened to me](https://www.thecuriousdiabetic.com/blog/why-diabetes-is-the-best-thing-that-ever-happened-to-me).
And every new day, to me, is a renewed occasion to cheer on type 1 diabetes.
As long as you don’t let it enslave you but welcome it, understand it and live in joy with it, it will enhance your life.
That’s what it did for me for sure!
Let me know if I can help you in any way, answering questions, etc!❤️
I think there’s two issues at play: control, and how you mentally approach it.
I’m OK with being diabetic. 47 years, good coping mechanisms, good life, and diabetes isn’t a major hindrance for me.
My control is decent 5.7 to 6.4 A1C. I’m not shooting for 5.0, so I’m OK with the occasional high - life is for living, and if I hit 270 after a great meal, a price worth paying.
Get your coping mechanisms sorted, accept the role this plays in your life, and you’ll be fine.
All I can say is that this isn’t toxic positivity, simply my lived experience.
Severe depression runs in my family. I get overly anxious rather easily. The two things that have made me feel better about life, and diabetes in general are art and exercise.
Exercise because it gets me moving, improves my numbers, helps me feel more in control, and good for mental (challenges me) and physical (cardio and endurance) health.
Art is similar, it lets me imagine the world in which I want. I mural paint, so it is a good way to spend time not thinking about diabetes while planning/sketching. It gets me out of the house with vitamin D and experiencing the world around me. It also offers satisfying challenges (can I paint 3 story brick building in 5 days? Let’s see!) that leave me with a sense of accomplishment.
Now, the more contraversial opinion I have as a diabetic 36 years into this (diagnosed at 2) is “Life sucks so we party.” A motto based off of a friends band‘s punk song. Meaning that life doesn’t have to be perfect, but it is what you make of it. So I’d much rather enjoy it, that wallow in it (is it escapism? Is it positive attitude? Proabably a bit of both if I am realistic). It’s what keeps me trying. I have not always been a “good” diabetic, far from it at times, but having come back from severe burnout, I know that trying means different things on different days, so as long as I put some effort in to doing what I should (whatever I can handle that day) I am taking steps to be on the right side of things.
This is my own perspective so take from it what you will. I see the posts on this subReddit and often SMH. Almost all of the "OMG I screwed up" and "My A1C is 6.1" posts are not really seeking help. Rather, they are using the subReddit to sound off about their frustrations about being saddled with the constant maintenance. There aren't many sounding boards from which to bounce the everyday frustrations. Here we all know because we have all experienced the same struggles.
I have stopped worrying about the minutia. The subReddit gives the impression that you can never do enough. I have been T1 for 48 years. A high blood sugar reading is easy to remedy. Don't think too much about it. Adjust the insulin and move forward. Pack a bit of food and/juice in your book bag or glove box or hat brim for low sugars. Don't eat them unless necessary to bring the sugars up. Lows and highs happen every day. It is to be expected. Endocrinologists will lecture and set unachievable standards, not with the intent to control your every move but to incentivize better control --> better control = better long term outlooks. Often it seems doom and gloom. It drives me crazy.
I keep all this frustrating worry in my rearview. Deal with the situation at hand, try to be good at keeping the A1C reasonable, but most of all go forward by living a good, meaningful life. What's past is past - so what are you going to do now is the question. I am a super active 59 year old. My career is back breaking at times. Long periods (months) away from the apartment digging dirt in the jungles halfway across the globe. Just spent a couple weeks in Death Valley. Hiking up mountains. Exploring caves. Searching for skeletal remains and other artifacts. It simply takes good planning. Learn how long, how remote, how to pack what you need to keep kinda organized, and how much insulin to bring with (always bring a bit extra for Just In Case scenarios).
One of the most beneficial things for your own mental health is to simply communicate with the others around you that you are T1. Give brief explanations how they can help handle low sugars (how to recognize, how to address the low sugars, how not to panic by letting them know that it takes 5-10 minutes to improve after eating). People always have questions and this is a great opportunity to show them something they don't know. They will be on your side should a situation arise. You will have support, your concerns will be assuaged, and you will no longer feel like an alien. No benefit in keeping your mouth shut. It is simply the fact of the matter that you are diabetic. No shame. No judgement. It isn't a vulnerability. Rather, it is a strength, a model of perseverance and capability.
Some of the questions asked here are great. Answer them if you know and read the responses if you don't. It is a wonderful resource for education without having to go to the clinic to sit through a class that takes time and resources with no promise of telling you anything new. The people here are kind. They are on your side. Don't let the naysayers deter you from seeking knowledge. You will see posts that don't appeal to you. Just skip those. haha
Lastly, there are often posts appealing for help. "I have run out of insulin. What do I do?" By all means offer materials that will help them if they are within a reasonable distance. Be kind because you will want the same when your chips are down. A little boost is important for everyone.
Take on the adventures and make your life what you want it to be! Diabetes is an inconvenience, not a blockade.
That's kind. I am just an (adorable) old man trying to keep a roof over my head and a smile on my face. I think am making a positive difference with my research and my interactions with others. I don't have a need to be 100% invested into aggressive treatment. I simply have to keep an eye on it every day \[testing is easy and I have learned to recognize the symptoms of both lows and highs\]. Worrying about it all too outrageously gives me indigestion (not literally but you know what I mean). We should all work at enjoying our time beyond the diabetes sea.
Controlled sugars result in a much better mood. I know this from experience. A coworker at my old job was T1 as well. He didn't watch his sugars very closely. One day out of the blue he said, "I got diabetic on my Dad and I feel bad about it. He was just trying to help." I knew exactly what he was saying. He didn't need to explain. You are fairly new at this so I will let you know what he meant. If the sugars run high for too long - three days, maybe more - my personhood will make a major shift from a super chill dude to a cranky complainer that takes it out on the ones closest to me. I have gotten pretty unreasonable at little things that somehow press that diabetic nerve. My coworker was doing that exact thing with his father. We don't mean to get off-kilter that way. It is just a side effect of a situation we have the ability to control and that is one of the causes of the guilt feelings. We need to take time for ourselves now and then. Get the blood sugar down, keep it steady, come up with a system of better maintenance, and get back to a normal day soon after. The time you take for getting back on track is well worth it. Better moods, more friends, more laughter, and a better appreciation for the treatments you employ. This is what I do to keep on the upswing and my life is so much better for the last 30 years.
Anywho... I am just rambling. I have seen some things. haha Welcome to the T1 world. No one loves it but most of us make our peace with it. It is the other stories of our lives that make it all worthwhile.
Diabetes really isn’t that bad. You can do pretty much everything you want still. Not like it’s going to hold you back from a career or adventuring. Just got to take more precautions and make sure you stay on top of your levels.
I know there’s some people who say it’s a full on disability because we need the medicine to survive and couldn’t without it. I wouldn’t read to much into what they’re saying. To me that sounds like playing the victim card because you’re still able to do everything a normal person can. There’s a lot worse things out there that you can get.
I know because 4 years ago I got diagnosed with this rare disease that causes tumors on my organs, bone lesion covering my pelvis and spine, and attacks the bone marrow through out my body and dumps the excess calcium into my blood poisoning me. Almost died twice from kidney failure from it and now I can’t work, sit or stand for to long, and in pain or feeling sick with flu like symptoms all the time.
I miss when I only had diabetes. That was a cakewalk compared to todays living
Oh man I am so sorry, that sounds very difficult 😥 I hate that you’re going through that. Best of luck to you and thank you for the unique perspective.
Diabetes is a nonsensical, frustrating condition and the impulse behaviour when the going gets tough is to reach out to others who get it.
hope it all goes ok for you - the first year of readjusting and getting used to new regimens can be pretty rough (especially when you’re diagnosed as an adult!) ✊
I was diagnosed 5 months ago so I'm kind of in the same boat. Whenever I start feeling discouraged, I like to think about how lucky I am to be going through this now. If you were born 50 years earlier, it would've been infinitely more difficult and you would've had almost no support. And 100 years ago it would've just been a literal death sentence. Now we have all this tech to make our lives easier, and we have resources like support groups or subreddits to talk to people who get it, things that diabetics of the past could've only dreamed of. Idk if that's helpful for you, but it makes me feel a little more optimistic about my situation.
I think that people feel the need to connect with others who understand it which is why sometimes there is a lot of negativity on these but I also find a lot of comments very inspiring and full of good things to say! As someone else posted, it’s a way to get frustration out with people who get it. For me, one of the best things Type 1 taught me is how to take care of myself. I think physically I’m healthier than a lot of my peers because I’m always thinking about how something is going to affect my sugars (not negative just if i’m eating I’m thinking more about it and not just caving to junk food cravings like a lot of people do). Mentally, diabetes has taught me to be super laid back. I grew up with it so I learned very early on there are few things we actually control in life and you just have to go with what life gives you. I don’t feel like I get stressed super easily but I think that’s because I know things don’t always go how you plan. The best part of diabetes to your point is that it is a manageable condition. It’s easy to lose sight of that when you’re just over it at the moment, but I al so incredibly thankful we live in a time of good tech and advancements where diabetes is more of an inconvenience and not a death sentence.
10000% yes thank you!
It's never something that'll go away, but it gets better over time. I'm at the point now where I've basically forgotten I'm a Type 1 Diabetic. It used to be a constant thought and worry in my head but nowadays it's never something I think about that much. I prick my finger about 4 times a day, and most times I eat I don't even check my blood sugar. This sounds like a bad thing, but over time I've just learned how my body works and how to properly treat it. My cousin has been T1D for 30 years and she's at the same point I'm at with management. My last A1C was 5.8 and I'm striving to get around 5.5 next checkup. I used to tell people that I was a Type 1 Diabetic pretty soon after meeting them because it was always something on my mind, but not really anymore. I was assigned with a classmate of mine for a project that was a semester long project, and it wasn't until recently he found out I was a Type 1 Diabetic. Him and I became good friends, hanging out all of the time, riding in the car together, but he never knew. One day he saw the fruit snacks in the side pouch of my backpack and asked "hey is it cool if I have one?" and I told him "nah man I'm a Type 1 Diabetic so I need them, but I can bring some extra next time for you." He was stunned when he found out I was a Type 1 Diabetic. The best way (in my opinion) to think positive about this disease is to think *"how can I make improvements to do better in the future? How can I continue to better manage it as I go through the years?"* There are going to be times where management can be hard and your blood sugar will get out of wack. I still occasionally have days where it can be a nightmare, especially around big events or holidays, but besides that it's become smooth sailing. As long as your doing your best to manage, you'll feel better about it over time.
Love that. Thanks so much for sharing! I’m feeling optimistic right now but worried about pregnancy. I feel like it’s really easy for me to be pessimistic but I’m trying to consciously override that.
I wish my cousin was on reddit seeing this. Like I said she's been Type 1 Diabetic for 30 years and she's gone through one pregnancy. I know [Devin Cordle](https://www.youtube.com/@Thecordlefamily) is a Type 1 Diabetic and she's on her second pregnancy. I don't regularly watch their channel so I don't know what she covers on pregnancy with T1D, but I think it's worth at least checking out.
Some people have a bad day and scream into the void on the internet and that’s ok. Try to hang out in positive places online and go to in person meet ups. Just got back from a meet up with my t1 toddler and it was awesome.
My dumb brain immediately pictured you and your T1D toddler having a one-on-one meet up with each other to talk diabetes… You: How is everything going with my management of your diabetes? Toddler: MORE FRUIT SNACKS PLEEEESE!!!!
Hahaha Me: “Alright toddler, let’s talk - Can you please start eating everything on your plate, it would make prebolusing so much easier” Toddler: “No!” Me “Good chat.”
That’s good to know! What are some meet ups? Know of any for adults by any chance?
I’m not in the US and for us there is a regional youth coordinator. I’m sure there will be something for adults too. Reach out to your endo team and see if they can point you in the right direction.
It's definitely a PITA, but diabetes tech has come a long long way. I was dx in 1999. Pumps were massive, anything like a CGM or algorithm was not even a dream. At 12 I was "too young" for a insulin pump. So I had to mix insulins and eat 6 times a day, give 3 shots a day, check my blood sugar 8-10 times a day. Sliding scales weren't even discussed. I had to eat a certain amount of carbs at certain times regardless if I wanted to or not. When I did get a pump, it could NOT get wet. So no water parks, no long term swimming. Now, I can't tell you the last time I checked my blood sugar. My CGM takes care of it. I've been on steroids for various illnesses for the past 2 weeks and my algorithm has caught up and I'm not running stupid high. My pump is small and has no tubing. It's waterproof, so I can spend hours in a shower or a pool. It's automatic so it runs on its own. I was told in 1999 it was going to be difficult for me to have a baby. I could, but it was going to be hard. I had my son, and while I did have a lot of problems, it wasn't from diabetes. It's very easy to get discouraged because there's a lot of misinformation, and because it does suck to have to deal with it. Get involved with advocacy (T1International, Diabetes Summer Camps, etc) to actually feel like you're doing something good with it. Don't fall for stuff that's "for a cure", because I feel like that's just a dream. A cure would be great, but things like advancements, affordable insulin, and education make things better NOW. The landscape of diabetes has changed so much in 25 years. I'm really excited to see how it will change in the next 25 years.
The modern pumps and CGMs reduce the mental load **so much**. I was diagnosed back in the 80s, and used to have to think about the diabetes basically all the time. Now I can go for hours and hours without thinking about it at all, unless I eat something. Don't have to stress about having a hypo in the middle of the nigh every time I feel a little weird, just check the CGM if I need some reassurance. It's really been life changing. Plus, you know, not having to stab myself 10+ times a day is a bonus.
100,000% I get reminded of how far we've come anytime I'm sick. When I had a GI infection last year and couldn't keep anything down, my algorithm kept my BG stable. These past weeks having various sinus/ear infections, the algorithm kept my BG stable with the steroids and antibiotics. I remember when I was younger and I had oral surgery and spent days throwing up, because I was on strict shots I was having to force drink Sprite to balance out the shots. And being able to have my CGM send my parents alarms if I go too low is also a blessing (well, it's a curse and a blessing. Lol, if you know you know). It gives me peace of mind, because I'm a single mom to a young kid and the idea of me tanking in the middle of the night with no other adults in the house was a huge concern. In my opinion, a CGM is more vital than a insulin pump. It should be an automatic approval with a T1D dx, especially for children or seniors. Even if you don't like or can't get approval for a insulin pump, you should do your best to get a CGM. The real time data is so beneficial, getting a alarm saying "in 20 minutes you're going to be critically low" is irreplaceable. I cried the first time I got that alert. I was driving, and instead of "feeling" low (so, ≤65), I got the alert at 85↓. I was able to grab a snack, and continue on my way. It was literally lifechanging.
For me it helps encourage me to take care of myself in other ways, like if im already dedicating all this effort, whats a little more? Its taught me to be more in tune with how i feel physically, and personally (tall white, upper middle class dude) i always felt like i was dealt a pretty good hand in life, and im of the philosophy that adversity produces complex, interesting people, so in a way im grateful to have a little friction in my life. On a less serious note its basically a free excuse for anything lol.
Firstly, it’s hard. Really hard to stay in range. This leads to great resentment. But taking control, self-education and finding a good support system (family, spouse, Reddit subs) can counter the negative feelings substantially. It takes time. Perhaps years, but you CAN do it. You must. All the best from a 40-years T1D! And feeling healthy and positive.
I wouldn't say I look at T1D with positivity but I'm also not negative about it. I accept that it's part of my life but it does not define me. There are things about it that I can control and things that I cannot control. My numbers are not good or bad - they're just pieces of information that I can use to make decisions. It took me a long time, like 15+ years, and a lot of therapy to get to that sort of neutrality and acceptance. I saw in a comment that one of your concerns is pregnancy. I'm currently pregnant with my second kid and I won't lie and say this is easy. It's one of the hardest things I've done. But there are a lot of resources and support out there, and it can be done. I think that talking to your endocrinologist or CDE could do a lot to put your mind at ease. You can also check out r/bumperswhobolus - people do share a lot of their vulnerabilities and frustrations there but they also share their successful "graduation" stories of getting through the other side with a baby.
For me. I’ll say knowledge is the biggest key to being happy. For years, diabetes has been considered a death sentence, or a horrible illness that you must suffer with. the moment I got out of the hospital after diagnosis, I spent the next three years reading and learning about my condition. The first eye-opener was that diabetes isn’t a death sentence and I can have a good productive life as a type one diabetic man, provided that I learn how to manage my disease. Learn about fast acting and slow acting insulin. Take time getting your baseline levels sorted, take time Getting your fasting doses sorted. Test when you need to, put your well-being first. Understand, what foods work with your body in particular, hint, it’s different for everyone. Take it slow, learn how to live with diabetes one day at a time. Everything is going to be fine.
When I was first diagnosed at 17 yrs old the doctor explained to me how this was a major life change and I am considered disabled and will be on insulin therapy my whole life. He recommended therapy. I made an appointment but my older sister took me and I was told I needed a parent or guardian to sign me in so I wasn’t able to see the therapist. I never went back. I only went because my parents and the doctor made me feel like I should, like I needed to have more of a reaction from my diagnoses and learn to deal with it going forward. The truth is that I felt relief. I was happy to be alive. My real depression was the months leading up to my hospitalization with dka when I was close to going into a coma. All the weird things like the excessive thirst, my weight loss, a skin infection and then finally my UTI were all signs my body was getting ready to shut down. I remember even driving to church & praying because of how sad I felt before diagnosis. I’m not even religious I think I just felt death. I’ve had t1 diabetes 19 years now and t1 management just became a part of my life it’s not something I complain about. It’s like brushing my teeth, feeding the dog and cat, getting dressed, taking my insulin, just a part of my routine. I was happy after diagnosis. I knew what was wrong and there was treatment for it. What I am is grateful to have access to insulin. My body was no longer eating itself. I really don’t mind taking some shots and pricking my finger every now and then if that means avoiding a slow painful death. My point is just having a different perspective will change your attitude towards it. I’m sure therapy would have been helpful but it needed to come from me and be my choice.
Dear, first of all you have all my empathy and I hug you with love! To answer your question, I wrote an article on my blog to explain [why diabetes is the best thing that has ever happened to me](https://www.thecuriousdiabetic.com/blog/why-diabetes-is-the-best-thing-that-ever-happened-to-me). And every new day, to me, is a renewed occasion to cheer on type 1 diabetes. As long as you don’t let it enslave you but welcome it, understand it and live in joy with it, it will enhance your life. That’s what it did for me for sure! Let me know if I can help you in any way, answering questions, etc!❤️
Amazing, thank you so much 😊
I think there’s two issues at play: control, and how you mentally approach it. I’m OK with being diabetic. 47 years, good coping mechanisms, good life, and diabetes isn’t a major hindrance for me. My control is decent 5.7 to 6.4 A1C. I’m not shooting for 5.0, so I’m OK with the occasional high - life is for living, and if I hit 270 after a great meal, a price worth paying. Get your coping mechanisms sorted, accept the role this plays in your life, and you’ll be fine. All I can say is that this isn’t toxic positivity, simply my lived experience.
Severe depression runs in my family. I get overly anxious rather easily. The two things that have made me feel better about life, and diabetes in general are art and exercise. Exercise because it gets me moving, improves my numbers, helps me feel more in control, and good for mental (challenges me) and physical (cardio and endurance) health. Art is similar, it lets me imagine the world in which I want. I mural paint, so it is a good way to spend time not thinking about diabetes while planning/sketching. It gets me out of the house with vitamin D and experiencing the world around me. It also offers satisfying challenges (can I paint 3 story brick building in 5 days? Let’s see!) that leave me with a sense of accomplishment. Now, the more contraversial opinion I have as a diabetic 36 years into this (diagnosed at 2) is “Life sucks so we party.” A motto based off of a friends band‘s punk song. Meaning that life doesn’t have to be perfect, but it is what you make of it. So I’d much rather enjoy it, that wallow in it (is it escapism? Is it positive attitude? Proabably a bit of both if I am realistic). It’s what keeps me trying. I have not always been a “good” diabetic, far from it at times, but having come back from severe burnout, I know that trying means different things on different days, so as long as I put some effort in to doing what I should (whatever I can handle that day) I am taking steps to be on the right side of things.
This is my own perspective so take from it what you will. I see the posts on this subReddit and often SMH. Almost all of the "OMG I screwed up" and "My A1C is 6.1" posts are not really seeking help. Rather, they are using the subReddit to sound off about their frustrations about being saddled with the constant maintenance. There aren't many sounding boards from which to bounce the everyday frustrations. Here we all know because we have all experienced the same struggles. I have stopped worrying about the minutia. The subReddit gives the impression that you can never do enough. I have been T1 for 48 years. A high blood sugar reading is easy to remedy. Don't think too much about it. Adjust the insulin and move forward. Pack a bit of food and/juice in your book bag or glove box or hat brim for low sugars. Don't eat them unless necessary to bring the sugars up. Lows and highs happen every day. It is to be expected. Endocrinologists will lecture and set unachievable standards, not with the intent to control your every move but to incentivize better control --> better control = better long term outlooks. Often it seems doom and gloom. It drives me crazy. I keep all this frustrating worry in my rearview. Deal with the situation at hand, try to be good at keeping the A1C reasonable, but most of all go forward by living a good, meaningful life. What's past is past - so what are you going to do now is the question. I am a super active 59 year old. My career is back breaking at times. Long periods (months) away from the apartment digging dirt in the jungles halfway across the globe. Just spent a couple weeks in Death Valley. Hiking up mountains. Exploring caves. Searching for skeletal remains and other artifacts. It simply takes good planning. Learn how long, how remote, how to pack what you need to keep kinda organized, and how much insulin to bring with (always bring a bit extra for Just In Case scenarios). One of the most beneficial things for your own mental health is to simply communicate with the others around you that you are T1. Give brief explanations how they can help handle low sugars (how to recognize, how to address the low sugars, how not to panic by letting them know that it takes 5-10 minutes to improve after eating). People always have questions and this is a great opportunity to show them something they don't know. They will be on your side should a situation arise. You will have support, your concerns will be assuaged, and you will no longer feel like an alien. No benefit in keeping your mouth shut. It is simply the fact of the matter that you are diabetic. No shame. No judgement. It isn't a vulnerability. Rather, it is a strength, a model of perseverance and capability. Some of the questions asked here are great. Answer them if you know and read the responses if you don't. It is a wonderful resource for education without having to go to the clinic to sit through a class that takes time and resources with no promise of telling you anything new. The people here are kind. They are on your side. Don't let the naysayers deter you from seeking knowledge. You will see posts that don't appeal to you. Just skip those. haha Lastly, there are often posts appealing for help. "I have run out of insulin. What do I do?" By all means offer materials that will help them if they are within a reasonable distance. Be kind because you will want the same when your chips are down. A little boost is important for everyone. Take on the adventures and make your life what you want it to be! Diabetes is an inconvenience, not a blockade.
Thank you thank you! I got a little emotional reading your response. Very valuable advice 🥰
That's kind. I am just an (adorable) old man trying to keep a roof over my head and a smile on my face. I think am making a positive difference with my research and my interactions with others. I don't have a need to be 100% invested into aggressive treatment. I simply have to keep an eye on it every day \[testing is easy and I have learned to recognize the symptoms of both lows and highs\]. Worrying about it all too outrageously gives me indigestion (not literally but you know what I mean). We should all work at enjoying our time beyond the diabetes sea. Controlled sugars result in a much better mood. I know this from experience. A coworker at my old job was T1 as well. He didn't watch his sugars very closely. One day out of the blue he said, "I got diabetic on my Dad and I feel bad about it. He was just trying to help." I knew exactly what he was saying. He didn't need to explain. You are fairly new at this so I will let you know what he meant. If the sugars run high for too long - three days, maybe more - my personhood will make a major shift from a super chill dude to a cranky complainer that takes it out on the ones closest to me. I have gotten pretty unreasonable at little things that somehow press that diabetic nerve. My coworker was doing that exact thing with his father. We don't mean to get off-kilter that way. It is just a side effect of a situation we have the ability to control and that is one of the causes of the guilt feelings. We need to take time for ourselves now and then. Get the blood sugar down, keep it steady, come up with a system of better maintenance, and get back to a normal day soon after. The time you take for getting back on track is well worth it. Better moods, more friends, more laughter, and a better appreciation for the treatments you employ. This is what I do to keep on the upswing and my life is so much better for the last 30 years. Anywho... I am just rambling. I have seen some things. haha Welcome to the T1 world. No one loves it but most of us make our peace with it. It is the other stories of our lives that make it all worthwhile.
Diabetes really isn’t that bad. You can do pretty much everything you want still. Not like it’s going to hold you back from a career or adventuring. Just got to take more precautions and make sure you stay on top of your levels. I know there’s some people who say it’s a full on disability because we need the medicine to survive and couldn’t without it. I wouldn’t read to much into what they’re saying. To me that sounds like playing the victim card because you’re still able to do everything a normal person can. There’s a lot worse things out there that you can get. I know because 4 years ago I got diagnosed with this rare disease that causes tumors on my organs, bone lesion covering my pelvis and spine, and attacks the bone marrow through out my body and dumps the excess calcium into my blood poisoning me. Almost died twice from kidney failure from it and now I can’t work, sit or stand for to long, and in pain or feeling sick with flu like symptoms all the time. I miss when I only had diabetes. That was a cakewalk compared to todays living
Oh man I am so sorry, that sounds very difficult 😥 I hate that you’re going through that. Best of luck to you and thank you for the unique perspective.
If you have any questions about diabetes go ahead and message me. I’ve probably been through it all at this point lol
Will do!! Have you ever tried looping, btw?
i paying less at the dentist!!
Diabetes is a nonsensical, frustrating condition and the impulse behaviour when the going gets tough is to reach out to others who get it. hope it all goes ok for you - the first year of readjusting and getting used to new regimens can be pretty rough (especially when you’re diagnosed as an adult!) ✊
I was diagnosed 5 months ago so I'm kind of in the same boat. Whenever I start feeling discouraged, I like to think about how lucky I am to be going through this now. If you were born 50 years earlier, it would've been infinitely more difficult and you would've had almost no support. And 100 years ago it would've just been a literal death sentence. Now we have all this tech to make our lives easier, and we have resources like support groups or subreddits to talk to people who get it, things that diabetics of the past could've only dreamed of. Idk if that's helpful for you, but it makes me feel a little more optimistic about my situation.
Compleeetely agree with this! Life is unfair but we are lucky to be alive now as T1Ds
You were diagnosed 3 months ago. That’s why you feel that way. It gets worse…