This right here. Accept it and do what needs to be done. It is what it is attitude. But once you accept your situation you can fuck it. Learn how to take Advantage of it. There is a lot of diabetic influencers who excercise and lift weights and insulin helps tremendously with results. If you don’t manage it. It will be a bitch.
Unfortunately, you just have to deal with it. When I was younger and depressed over my diagnosis, I'd make myself feel better by reminding myself that the gene that caused me to get T1 could have triggered a far worse autoimmune disease. In a way I'm lucky that I got one that allows me to live a fairly normal life as long as I look after myself.
None of us wanted this, nobody is truly ok with being diabetic, on some level we all wish we were 'normal' but unfortunately there's nothing we can do to change things so we all just have to suck it up
idk dude, not many conditions that are slowly killing parts of you/you, while also having a good chance of killing you immedialty at any point, will kill you in a few days if you dont have access to the medication, require like 200 additioanly decisions a day on top of qll the normal decisions all humans make, affect every thing you do, is affected by everything you do, then even if you do the exact same thing every single day absoutly no change, you rarely every get the same result, all the while no one cares cause "its not that bad at least you have insulin" 😇 oh and the fucking cost 😇 I wish we stopped acting like this disease isn't absolutely horrible, drs consistently told me since I was dx at 6 "it's not that bad" "it could be worse" "at least we have insulin now" "it's managable" which just make light of how horrible it was. made it seem like it wasn't a big deal... it's just insulin
it's a lot easier to mentally deal with a conditon when everyone's automatic response to any sort of complaint about it 8snt along the lines of "it's not even that bad"
knowing this has prevented me from ever having any mental breakdown from the conditon,
if I had issues and had the mind set that it wasn't actually that bad and i was over reacting like basically all medical profs and ppl like u think, then It would certainly be a lot harder to deal with but if that's working for u then u do u 🤷♀️
I get that. To be honest my diagnosis was traumatic as fuck, I spent about a month in a coma and nearly died multiple times during that period. I'm just glad I'm still here. The injections and the blood sugars and all that don't bother me, I'm just happy I cheated death 20 years ago.
With dark humor. A lot of dark humor.
In seriousness I just approach as “it is what it is.”
I can’t make it go away, so it just is and I deal with it. Honestly I have an immune deficiency disorder that limits my life way more than being diabetic does, and even with that it is what it is.
If you can't laugh about it, you'll only cry.
I like making some jokes about it, and now a few of my friends do as well to make things a little lighter. One calls me Captain Diabetes from the South Park games, another asks if my 'tick damage' has gone up when I check my levels cuz we like gaming, and I like to tell friends and family that I shoot up so I DONT get high.
There are some things where I draw the line, but for the most part, humour is one of the best things to help pick you up and get you through things.
I felt the way you did for a very long time. I’m on the road to becoming a doctor because of my type one diabetes. You will find beauty and reason in the pain. My older sister was diagnosed three years after I was and now we’re closer than ever. You will find reason in suffering.
I read a lot of self pity in your post. And this is not meant as criticism, I get it. I’ve been loaded with self pity for years, and it made me miserable. When I stopped feeling sorry for myself, things really improved. Easier said than done, it is a process, but it really helped me.
Life is like a box of chocolates...... But don't eat them without bolusing first.
Stop trying to figure it out, you'll just make yourself crazy. My sister has type 1, I have it, my two kids have it. Life is just fucked that way.
Accept and move on. Comparing your situation to others is meaningless and only leads to feelings of resentment towards loved ones over something no one has control over. I look at it as my unique challenge to overcome.
Yeah just deal with it dude, I've got t1d, hashimoto's and multiple sclerosis...and there are multiple people on this sub having multiple autoimmunes , just be thankful that you got dealt the lesser shitty cards and try to live your life happily, as best as you can do
You just have to understand that you don't have a monopoly on sorrow. March on. When I was down I used music
https://youtu.be/Yd5rcLz8sxo?si=1rmu5Y29rmSde35l
You just get on with it. It doesn't have to stop you from doing anything you want. Yes, some days your sugars will be stubborn or you will have a bad low that wipes you out. But most days it will be fine (as long as you take your insulin and pay attention to sugars!). A pump and a CGM can help immensely. I have had Type 1 for 40 years. I have seen big advances in tech and things are way easier now than they were when I was growing up.
I have traveled the world, competed in sporting events, I have spent hours in and on the water in my work as a marine biologist. Diabetes won't hold you back. Only you can hold you back.
Yes, some days I get frustrated with it, but that's life. Keep your chin up and take it a day at a time. It gets easier as you get more experienced.
We cope with it because we don’t have an alternative. I’m also the only person in my family to be diagnosed with T1D, just like I’m the only person in my family to have epilepsy, hypothyroidism, HS, and more. I’ve gotten pretty good at coping over the years, and it really doesn’t weigh on me mentally anymore. Hell, last year I was diagnosed with a (thankfully small) brain tumor and didn’t bat an eye; I just said, “okay, what do we do now?” Complaining isn’t going to make my conditions go away, it’s just going to make me feel worse.
I mean, you accept it and manage it or you die. Those are your choice.
Also, RA and Hashimotos aren’t a walk in the park either. Chronic illnesses suck all around.
It’s also possible that you aren’t the first one, just the first to be correctly diagnosed with type one since there are a shit ton of health care professionals that still believe that adults aren’t able to develop type 1 diabetes so they will automatically diagnose as type 2.
I'm the only one in my family too, on either side, in 5 generations. T1 annoys me sometimes, or gets under my skin. But I don't look at it like I "have to" take insulin, check BG, etc. I look at it like like, "I get to" do those things. Mother Nature decreed that I should have been dead at age 15. Modern medicine gave me the opportunity to live. Now I'm 51 and otherwise healthy. I have a good job, my wonderful daughter just graduated from high school, and I've found an amazing supportive girlfriend. Yesterday I lifted weights for an hour and ran a mile. It isn't all blue sky and sunshine. I have bad days, and extra worries that most other people don't have. But I'm not going to roll over and let T1 win...
Diabetes is a bitch. It tries to kill me every single day and every single day I beat its bitch ass. Sometimes it comes at me with some heavy shit but I'm still here.
Eating a pastry sometimes, screaming into a pillow, hanging out here and seeing I’m not alone. After years it’s mostly background noise but sometimes it’s all the foreground.
I was the first one in my family as well. I just deal, I don’t make it my entire existence. I honestly do my best to live my life as I normally would without it. Had it 32 years. I do the things that make me happy, exploring, traveling, having fun with people, live music. My husband occasionally checks to make sure my sugars are okay if something comes up or I seem low, but honestly my life is pretty normal given the circumstances.
For some reason I never really thought about it. Sure, there is frustration sometimes but outside of dosing insulin and checking my bg, I don’t really think about it a lot.
Well I have type I, hashimotos, and psoriatic arthritis so 🤷🏼♀️ I wouldn’t discount the arthritis- the crippling fatigue is so much worse for me than the pain, and sometimes I *can’t* go about my day.
Idk- I just deal with it. The only person hurt by me dwelling on it is me.
Live your life and master your control. It only sucks if YOU let it suck. There is a vast number of people with disabilities and circumstances far worse and more debilitating - learn to appreciate how fortunate the “cards you have been dealt” are.
50% of the time, I don’t cope.
The other 50%, I try to remind myself there’s a life I gotta live and I have to just get through it, I can’t be sorry for myself. I will live not in spite of, but to spite, diabetes. Fuck diabetes.
You might be first in your family but one of the millions and millions of other T1Ds. Welcome to the club
How to cope with it? You decide. For example, these guys and girls with T1D run ultra-marathons…. And seems to be are doing fine. So you have no excuses not to live your life to the fullest
Linda Carrier
At age 61, Carrier has run more than 78 marathons and is the first woman to complete the World Marathon Challenge three times. The World Marathon Challenge involves running seven marathons on seven continents in seven days.
Bruce McLaren
McLaren has completed the Marathon des Sables, a 155-mile, six-day endurance event in the Moroccan desert, while wearing an insulin pump.
Eric Tozer
Tozer is an ultra-athlete who has competed in marathons around the world while using a Dexcom Continuous Glucose Monitoring (CGM) System to manage his type 1 diabetes.
Me too, and my family can trace way back. I’m convinced it’s modern life, the stress and all the plastic and all the modern chemicals. But I have to say, I did eDiets before becoming diabetic and, well, it’s kinda to me just like eDiets forever.
Be really really pissed at the fact that you have it…then do battle! It has been a struggle but there are always far worse situations if you look around. Do the best you can and eventually the new normal for you will be part of your daily routine. It will still suck and some days are better than others. Look forward to the next day being better and live the fullest life, time is short don’t waste it on poor me thoughts ~ that will make it much worse!
Hiking, climbing, skiing, and lots of heavy fucking metal.
Edit: was seriously depressed about it for two years (I got dx'd at age 21) and another couple rough ones after that before I got it in gear and started caring for myself.
I’m the first one in my family too, and I’m glad, I rather it’s me than my brother, or mom, etc. I was in shock for about an hour after diagnosed, then it was like nothing happened, other than having to use insulin, my life is pretty much the same as it was, with a little extra planning. Both rheumatoid arthritis & hashimotos are horrible, but I guess the grass is always greener. I personally rather make a million decisions a day than being in pain every day.
There’s never been more help for diabetics than there is right now. Managing the condition can feel tiring, but I’m grateful for all the help I can get. I am highly motivated to stay within range.
When I was diagnosed exactly 11 years ago I asked the same thing. I’m the eldest of 4, no one else in our family has it, etc. At some point after my diagnosis, I was giving myself a shot to eat and my 3 younger siblings looked in terror watching me. It was then I put it together that I am so grateful it was me that ended up with it in our family vs one of my other siblings. I’m responsible, I take care of others and myself, and as the eldest child (who is also a female) I have a knack for rising to difficult occasions. I’ve said for 11 years I’m so grateful it was me vs one of my siblings that ended up with the short straw, because I can handle it. At times I feel like I can’t, but thinking about them and how they look up to me I can’t be too upset. I’m more responsible, stronger in ways. Everyone is different, so this is just my viewpoint. When things get hard I know I can lean on my family and friends, and they make coping with this disease so worth it. Life is beautiful. Don’t forget it.
Same here—In fact, I’m the ONLY family member, and it’s a BIG family, 20 first cousins, many nieces, nephews, many aunts and uncles (all now deceased) afflicted with anything autoimmune. Why Me? 🤷🏻♂️ Luck of the draw, bad karma, whatever. And so YES, I just deal with it. In fact, I’ve done just that for the past 58 years and I’ve been doing pretty damned great with it. I kind of waited, first as my siblings and later as their kids grew up. Nobody ever got anything and now they’re all grown with kids of their own—my great-nieces and nephews—none with any medical issues. I’m happy for all of them.
I made it have a purpose. This isn’t everyone’s answer and I completely respect it, and I don’t think everyone needs this answer to make it work, but it helps me. I learned that, spiritually, type 1 represents an inability or lack of ability to enjoy life. And that does apply to me, I do relate to that. I had a really hard time enjoying life, especially when I was younger. And it has helped me be better with my diabetes.
So, whatever you need to get through it and be good at taking care of it is the right answer.
It becomes normal. I never had anyone either, I do have a cousin but he was misdiagnosed as t2 for most of my life. I’ve learned that id rather be cautious and eat low carb than feel like shit and eat high carb foods
Tell your mom to watch out for Sjorgren’s Syndrome. People with rheumatoid arthritis are susceptible to getting this autoimmune disease. It’s really painful and doctors sometimes miss it.
I don’t know how I would cope without therapy tbh. I highly recommend trying to find a therapist who has experience with chronic illnesses. It’s something not a lot of people understand or are even able to understand.
I have almost the exact same situation, I am the first t1d in my family for over 70 years.
What helped me the most was learning more about my condition, figure out what foods I handle well, ones I don't and adjust so I don't feel miserable or sick constantly. Also having friends and family that also understand the condition can help a lot with making it feel like t1d is like any other condition and not treat you differently because of it. Yes my friends do still ask if I can have certain things because they're unsure but I appreciate it.
Just live life the way you want, make sure to take care of yourself and finding others with the t1d or informing friends and family about it can definitely make you feel less alone
There are speed bumps on the road of life. Diabetes is one of them. It slows me down sometimes but I don’t let it stop me from living my life.
Diabetes doesn’t stop me from going swimming or going on vacation or going on a cruise or going on amusement park rides.
Don’t let it run your life. Live the life you want to live.
> just accept it and manage it
That’s how you cope. Or it’s how I do.
Got diagnosed in my 30s and already had to cope with anxiety and depression by accepting and managing it, though, so I’ve had plenty of practice.
When I was younger I felt the same way (I was 7) and as bad as it was I always wished it was my brother who got it instead of me (horrible ik but I was young and going through a major life transition). Since then (almost 22, 15 years later) I’ve come to terms with it. Trust me I still have bad days and go through burn out (more times than I can count) but that’s when having a support system comes into play. I wouldn’t be where I am without the help of friends and family (especially my mom). So when I got through burn out I tell someone in my life (if I’m at school my friends. At home my mom) and my friends (who follow me on dex) will remind me to correct if I’m high and if we’re getting food together to dose. If it’s my mom she becomes more hands on and will count carbs and dose me (yes even with a pump she’ll do it for me).
So essentially as much as it sucks it’s just something you have to accept and to get a support system for times when it’s to much to handle. Ik there’s also therapists who specialize in chronic diseases like T1D so that might be something to look into!
Yep. Accept and manage and move on. At least we have the opportunity to manage it. When asked why I think I'm the only one in my family to get Type 1 diabetes my answer is because God knew I was the only one strong enough to handle my shit.
I was diagnosed type 1 and Hashimoto’s at age 8. Rheumatoid Arthritis at 27. No you wouldn’t rather have that, trust me.
Diabetes at least I have tools and decisions I can make to keep myself healthy. I have some control. Rheumatoid arthritis is more like let’s take this combination of drugs and throw it at the disease and hope to god my body responds. And then who in the hell knows how many years you will get out of that combination before you have to find new meds. I got lucky with one grouping and got 8 years. The next combo I only got two. Bridging to new medications is hell. I’m now an insulin resistant type 1 because of prednisone.
6 months of misdiagnosis in the beginning meant by the time I was diagnosed with RA I was utterly crippled. I couldn’t dress myself without crying because the joint pain was that bad. Using a cane. Using a motorized cart to get groceries. Stares because I had a handicap placard in my 20s. But you don’t look sick”. Meanwhile I had joints I literally couldn’t bend because of how swollen they were. No energy but also couldn’t sleep. Once we did find a med combo I responded to after my diagnosis, it took over a year to feel even close to “normal”.
I have all three and I cope because I have to. Is it exhausting? Yeah. The amount of time I spend with insurance fighting over prior authorizations is exhausting. I generally take it a day at a time because worrying about what might go wrong next will drive me crazy. But managing the diseases and trying to manage them well means I get to enjoy life. I don’t have full control over what RA is doing to my body, but I can limit additional damage like neuropathy and eye problems by keeping my diabetes in check. Having a Dexcom and insulin pump helps automate it a bit so that generally it can be a background concern unless I’m having an off day (I.e.infusion set went bad early or I’m sick and just not responding to insulin like I should).
Been t1 for 29yrs it’s just something you deal with. You can do it. Stay positive and never focus on the negatives set long term goals that are achievable and keep powering through it. You have a community here too to talk and vent. I never had anyone to talk to about being diabetic. Now I use this thread to really vent and talk about it.
Personally I battle with myself not to put a gun in my mouth ever single day because of this disease. But this is the cards we have bin given in life and the saying go's what doesn't kill you makes you stronger. Keep up the fight you got this
I feel for you, it really must be hard especially when you have no one to relate to with type one in the family. To make matters worse I would imagine that those that do have type 2 or know of those with type 2. Will throw some stigmatisation in your direction. For example "Should you be eating that?" your relative with type 2 manage to handle it if he doesn't eat those things. But of course, you and I know type 1 is a different ball game.
The only thing I say is that you are the best person to figure out what works for you. As long as you listen to reputable sources for information and advice, recognise your successes, and what you could be doing better and importantly don't get discouraged and it is ok to feel frustrated it's hard to manage, there is always another way to tackle the issue or even tweak a potential solution to make it work better.
From the social aspect, you are going to feel alienated but share what you have learnt and your successes. They will pick up on how hard it is for you and become more empathetic.
What be would worse that I didn’t have a way to deal with it. It would be a horrible existence and death. I do do life to the fullest more so than most non T1D because I understand how precious life is.
This is exactly how I felt when I was diagnosed with T1D this past November! It can feel really isolating demoralizing when something so overwhelming and life changing as this diagnosis hits you out of nowhere. However, I want you to know that you are not alone in this; we have an entire community here on Reddit to support you, and there are so many people who are also dealing with this lifelong struggle. There will be good and bad days (sometimes mostly bad days), but it is something that you will learn to live and accept – it may take time, and I haven't yet even entirely processed this diagnosis for myself, but I have come to believe this too. Just make sure that you take good care of yourself, take the advice of your endocrinologist with regard to insulin dosages and diet recommendations, and you got this! :)
I too am the first in my family and not many cares too much to learn about it. I’m return I left home a few month after dx and didn’t take insulin for a really long time. Now I have lots of irreversible damage. Stay diligent in your disease
If you monitor your diabetes and take care of yourself, you can live a very normal life. And our diagnosis isn’t a death sentence. Unless you ignore it. And with the break through they’ve had, even in the last 20 years, you can have a cgm and an insulin pump, and only need to input when you eat.
Out of all of the diseases that there are in the world, diabetes is a lot better than a lot of them. We can lead normal lives, it is completely manageable. You don’t need to go get dialysis, or chemotherapy, won’t lose your hair. You just need to manage what you eat, take insulin and watch your blood sugar. I’ve had diabetes for 25 years, and after a little bit, it’s second nature and you don’t even have to think about it anymore.
And you are not your disease! You can still do everything you want to do.
Personally I don’t see it in a similar way regarding Decisions etc.
Yes it’s factually true
but so are the decisions I would have otherwise had if not t1d,
such as what time shall I eat breakfast,
what shall I wear today,
timings for transport etc etc
Having. To do the washing up
They’re all a pain if i were to view it like that
but just part of life
I’ve never seen diabetes management as anything other than this personally.
Sometimes I think about what I could have which is worse
sometimes I just have to drink Lucozade which is a tasty soft drink and really not a drama per se
Yes it is a chore sometimes
but it’s not that terrible compared to other illnesses
So in some ways I’m thankful for what I have got that is still good
This is just for me and my views on it
Although, caveat, I do hate trains, they do get to me actually
The trains in England are absolutely atrocious and extremely expensive
There is no dealing with it. My mindset is that I am just living my life. Just like your mom and sister are living their own lives. No two people have the same exact life as each other. Management of my life looks different to those around me, and I have accepted that. As soon as I start wishing that things were different, life gets hard. Do I wish that I didn’t have diabetes, maybe… but then I wouldn’t know who I am, my experiences wouldn’t contribute to the successes that I am working toward. Just remember, you can literally do anything you want to. The part to remember is that the steps are different. Some people may say it’s hard, and it is. There’s no sugarcoating it. But that makes you strong in turn. Every low in the middle of the night, every long lasting high or DKA episode is a battle. But then something happens, you start winning those battles. And each time they happen it starts to feel like less of a battle and more like tying your shoes. It takes time. But hang in there, vent when you need to, listen to your endo, and then you take over from there. Remember, you’re never going to be alone. Maybe even one day you could be the one to find a cure. But that all starts with the daily finger poke, and correct dosage for that first meal of the day. One step at a time my friend!
You don’t have any other choice. I live a free and normal life - I just add insulin manually rather than pancreatically.
This right here. Accept it and do what needs to be done. It is what it is attitude. But once you accept your situation you can fuck it. Learn how to take Advantage of it. There is a lot of diabetic influencers who excercise and lift weights and insulin helps tremendously with results. If you don’t manage it. It will be a bitch.
Unfortunately, you just have to deal with it. When I was younger and depressed over my diagnosis, I'd make myself feel better by reminding myself that the gene that caused me to get T1 could have triggered a far worse autoimmune disease. In a way I'm lucky that I got one that allows me to live a fairly normal life as long as I look after myself. None of us wanted this, nobody is truly ok with being diabetic, on some level we all wish we were 'normal' but unfortunately there's nothing we can do to change things so we all just have to suck it up
idk dude, not many conditions that are slowly killing parts of you/you, while also having a good chance of killing you immedialty at any point, will kill you in a few days if you dont have access to the medication, require like 200 additioanly decisions a day on top of qll the normal decisions all humans make, affect every thing you do, is affected by everything you do, then even if you do the exact same thing every single day absoutly no change, you rarely every get the same result, all the while no one cares cause "its not that bad at least you have insulin" 😇 oh and the fucking cost 😇 I wish we stopped acting like this disease isn't absolutely horrible, drs consistently told me since I was dx at 6 "it's not that bad" "it could be worse" "at least we have insulin now" "it's managable" which just make light of how horrible it was. made it seem like it wasn't a big deal... it's just insulin
I'm sorry you feel that way but personally that's not my experience at all. Please do not try to force your negativity onto me ✌🏻
it's a lot easier to mentally deal with a conditon when everyone's automatic response to any sort of complaint about it 8snt along the lines of "it's not even that bad" knowing this has prevented me from ever having any mental breakdown from the conditon, if I had issues and had the mind set that it wasn't actually that bad and i was over reacting like basically all medical profs and ppl like u think, then It would certainly be a lot harder to deal with but if that's working for u then u do u 🤷♀️
I get that. To be honest my diagnosis was traumatic as fuck, I spent about a month in a coma and nearly died multiple times during that period. I'm just glad I'm still here. The injections and the blood sugars and all that don't bother me, I'm just happy I cheated death 20 years ago.
With dark humor. A lot of dark humor. In seriousness I just approach as “it is what it is.” I can’t make it go away, so it just is and I deal with it. Honestly I have an immune deficiency disorder that limits my life way more than being diabetic does, and even with that it is what it is.
If you can't laugh about it, you'll only cry. I like making some jokes about it, and now a few of my friends do as well to make things a little lighter. One calls me Captain Diabetes from the South Park games, another asks if my 'tick damage' has gone up when I check my levels cuz we like gaming, and I like to tell friends and family that I shoot up so I DONT get high. There are some things where I draw the line, but for the most part, humour is one of the best things to help pick you up and get you through things.
I also use alot of dark humor about it lol
I felt the way you did for a very long time. I’m on the road to becoming a doctor because of my type one diabetes. You will find beauty and reason in the pain. My older sister was diagnosed three years after I was and now we’re closer than ever. You will find reason in suffering.
I read a lot of self pity in your post. And this is not meant as criticism, I get it. I’ve been loaded with self pity for years, and it made me miserable. When I stopped feeling sorry for myself, things really improved. Easier said than done, it is a process, but it really helped me.
Life is like a box of chocolates...... But don't eat them without bolusing first. Stop trying to figure it out, you'll just make yourself crazy. My sister has type 1, I have it, my two kids have it. Life is just fucked that way.
The only real solace I've ever felt is knowing that I'm not alone, and that there are many people here to talk to about problems.
Accept and move on. Comparing your situation to others is meaningless and only leads to feelings of resentment towards loved ones over something no one has control over. I look at it as my unique challenge to overcome.
Yeah just deal with it dude, I've got t1d, hashimoto's and multiple sclerosis...and there are multiple people on this sub having multiple autoimmunes , just be thankful that you got dealt the lesser shitty cards and try to live your life happily, as best as you can do
You just have to understand that you don't have a monopoly on sorrow. March on. When I was down I used music https://youtu.be/Yd5rcLz8sxo?si=1rmu5Y29rmSde35l
You just get on with it. It doesn't have to stop you from doing anything you want. Yes, some days your sugars will be stubborn or you will have a bad low that wipes you out. But most days it will be fine (as long as you take your insulin and pay attention to sugars!). A pump and a CGM can help immensely. I have had Type 1 for 40 years. I have seen big advances in tech and things are way easier now than they were when I was growing up. I have traveled the world, competed in sporting events, I have spent hours in and on the water in my work as a marine biologist. Diabetes won't hold you back. Only you can hold you back. Yes, some days I get frustrated with it, but that's life. Keep your chin up and take it a day at a time. It gets easier as you get more experienced.
We cope with it because we don’t have an alternative. I’m also the only person in my family to be diagnosed with T1D, just like I’m the only person in my family to have epilepsy, hypothyroidism, HS, and more. I’ve gotten pretty good at coping over the years, and it really doesn’t weigh on me mentally anymore. Hell, last year I was diagnosed with a (thankfully small) brain tumor and didn’t bat an eye; I just said, “okay, what do we do now?” Complaining isn’t going to make my conditions go away, it’s just going to make me feel worse.
I mean, you accept it and manage it or you die. Those are your choice. Also, RA and Hashimotos aren’t a walk in the park either. Chronic illnesses suck all around. It’s also possible that you aren’t the first one, just the first to be correctly diagnosed with type one since there are a shit ton of health care professionals that still believe that adults aren’t able to develop type 1 diabetes so they will automatically diagnose as type 2.
I'm the only one in my family too, on either side, in 5 generations. T1 annoys me sometimes, or gets under my skin. But I don't look at it like I "have to" take insulin, check BG, etc. I look at it like like, "I get to" do those things. Mother Nature decreed that I should have been dead at age 15. Modern medicine gave me the opportunity to live. Now I'm 51 and otherwise healthy. I have a good job, my wonderful daughter just graduated from high school, and I've found an amazing supportive girlfriend. Yesterday I lifted weights for an hour and ran a mile. It isn't all blue sky and sunshine. I have bad days, and extra worries that most other people don't have. But I'm not going to roll over and let T1 win...
Diabetes is a bitch. It tries to kill me every single day and every single day I beat its bitch ass. Sometimes it comes at me with some heavy shit but I'm still here.
Eating a pastry sometimes, screaming into a pillow, hanging out here and seeing I’m not alone. After years it’s mostly background noise but sometimes it’s all the foreground.
I was the first one in my family as well. I just deal, I don’t make it my entire existence. I honestly do my best to live my life as I normally would without it. Had it 32 years. I do the things that make me happy, exploring, traveling, having fun with people, live music. My husband occasionally checks to make sure my sugars are okay if something comes up or I seem low, but honestly my life is pretty normal given the circumstances.
For some reason I never really thought about it. Sure, there is frustration sometimes but outside of dosing insulin and checking my bg, I don’t really think about it a lot.
Well I have type I, hashimotos, and psoriatic arthritis so 🤷🏼♀️ I wouldn’t discount the arthritis- the crippling fatigue is so much worse for me than the pain, and sometimes I *can’t* go about my day. Idk- I just deal with it. The only person hurt by me dwelling on it is me.
Live your life and master your control. It only sucks if YOU let it suck. There is a vast number of people with disabilities and circumstances far worse and more debilitating - learn to appreciate how fortunate the “cards you have been dealt” are.
50% of the time, I don’t cope. The other 50%, I try to remind myself there’s a life I gotta live and I have to just get through it, I can’t be sorry for myself. I will live not in spite of, but to spite, diabetes. Fuck diabetes.
You might be first in your family but one of the millions and millions of other T1Ds. Welcome to the club How to cope with it? You decide. For example, these guys and girls with T1D run ultra-marathons…. And seems to be are doing fine. So you have no excuses not to live your life to the fullest Linda Carrier At age 61, Carrier has run more than 78 marathons and is the first woman to complete the World Marathon Challenge three times. The World Marathon Challenge involves running seven marathons on seven continents in seven days. Bruce McLaren McLaren has completed the Marathon des Sables, a 155-mile, six-day endurance event in the Moroccan desert, while wearing an insulin pump. Eric Tozer Tozer is an ultra-athlete who has competed in marathons around the world while using a Dexcom Continuous Glucose Monitoring (CGM) System to manage his type 1 diabetes.
Me too, and my family can trace way back. I’m convinced it’s modern life, the stress and all the plastic and all the modern chemicals. But I have to say, I did eDiets before becoming diabetic and, well, it’s kinda to me just like eDiets forever.
Lots of really dark jokes and knowing that my time with diabetes will end
Be really really pissed at the fact that you have it…then do battle! It has been a struggle but there are always far worse situations if you look around. Do the best you can and eventually the new normal for you will be part of your daily routine. It will still suck and some days are better than others. Look forward to the next day being better and live the fullest life, time is short don’t waste it on poor me thoughts ~ that will make it much worse!
Hiking, climbing, skiing, and lots of heavy fucking metal. Edit: was seriously depressed about it for two years (I got dx'd at age 21) and another couple rough ones after that before I got it in gear and started caring for myself.
Some days are great but most days are horrible. I don't think that after 25 years of this that i've gotten over it.
Yep, it could have been something much more deadly or painful. Enjoy your life!
Badly
I’m the first one in my family too, and I’m glad, I rather it’s me than my brother, or mom, etc. I was in shock for about an hour after diagnosed, then it was like nothing happened, other than having to use insulin, my life is pretty much the same as it was, with a little extra planning. Both rheumatoid arthritis & hashimotos are horrible, but I guess the grass is always greener. I personally rather make a million decisions a day than being in pain every day.
It's not good, but it's not the worst thing in my life either. You get used to it.
My handle: this is now war, and I don't lose.
It is what it is. I just get on with living my best life. No point getting upset about it - won't make it go away.
There’s never been more help for diabetics than there is right now. Managing the condition can feel tiring, but I’m grateful for all the help I can get. I am highly motivated to stay within range.
You simply live with the pain.
When I was diagnosed exactly 11 years ago I asked the same thing. I’m the eldest of 4, no one else in our family has it, etc. At some point after my diagnosis, I was giving myself a shot to eat and my 3 younger siblings looked in terror watching me. It was then I put it together that I am so grateful it was me that ended up with it in our family vs one of my other siblings. I’m responsible, I take care of others and myself, and as the eldest child (who is also a female) I have a knack for rising to difficult occasions. I’ve said for 11 years I’m so grateful it was me vs one of my siblings that ended up with the short straw, because I can handle it. At times I feel like I can’t, but thinking about them and how they look up to me I can’t be too upset. I’m more responsible, stronger in ways. Everyone is different, so this is just my viewpoint. When things get hard I know I can lean on my family and friends, and they make coping with this disease so worth it. Life is beautiful. Don’t forget it.
Same here—In fact, I’m the ONLY family member, and it’s a BIG family, 20 first cousins, many nieces, nephews, many aunts and uncles (all now deceased) afflicted with anything autoimmune. Why Me? 🤷🏻♂️ Luck of the draw, bad karma, whatever. And so YES, I just deal with it. In fact, I’ve done just that for the past 58 years and I’ve been doing pretty damned great with it. I kind of waited, first as my siblings and later as their kids grew up. Nobody ever got anything and now they’re all grown with kids of their own—my great-nieces and nephews—none with any medical issues. I’m happy for all of them.
I just try to drown it out as much as I can, kinda like driving.
Read uplifting books and stories about finding the cure. Two I’d recommend are BRAXTON’S TURN and BRAXTON’S PLAN
I made it have a purpose. This isn’t everyone’s answer and I completely respect it, and I don’t think everyone needs this answer to make it work, but it helps me. I learned that, spiritually, type 1 represents an inability or lack of ability to enjoy life. And that does apply to me, I do relate to that. I had a really hard time enjoying life, especially when I was younger. And it has helped me be better with my diabetes. So, whatever you need to get through it and be good at taking care of it is the right answer.
It becomes normal. I never had anyone either, I do have a cousin but he was misdiagnosed as t2 for most of my life. I’ve learned that id rather be cautious and eat low carb than feel like shit and eat high carb foods
Community, honesty with my loved ones, and dark humor.
Tell your mom to watch out for Sjorgren’s Syndrome. People with rheumatoid arthritis are susceptible to getting this autoimmune disease. It’s really painful and doctors sometimes miss it.
I don’t know how I would cope without therapy tbh. I highly recommend trying to find a therapist who has experience with chronic illnesses. It’s something not a lot of people understand or are even able to understand.
I have almost the exact same situation, I am the first t1d in my family for over 70 years. What helped me the most was learning more about my condition, figure out what foods I handle well, ones I don't and adjust so I don't feel miserable or sick constantly. Also having friends and family that also understand the condition can help a lot with making it feel like t1d is like any other condition and not treat you differently because of it. Yes my friends do still ask if I can have certain things because they're unsure but I appreciate it. Just live life the way you want, make sure to take care of yourself and finding others with the t1d or informing friends and family about it can definitely make you feel less alone
There are speed bumps on the road of life. Diabetes is one of them. It slows me down sometimes but I don’t let it stop me from living my life. Diabetes doesn’t stop me from going swimming or going on vacation or going on a cruise or going on amusement park rides. Don’t let it run your life. Live the life you want to live.
> just accept it and manage it That’s how you cope. Or it’s how I do. Got diagnosed in my 30s and already had to cope with anxiety and depression by accepting and managing it, though, so I’ve had plenty of practice.
It’s not coping for me because I’ve had it all my life.
When I was younger I felt the same way (I was 7) and as bad as it was I always wished it was my brother who got it instead of me (horrible ik but I was young and going through a major life transition). Since then (almost 22, 15 years later) I’ve come to terms with it. Trust me I still have bad days and go through burn out (more times than I can count) but that’s when having a support system comes into play. I wouldn’t be where I am without the help of friends and family (especially my mom). So when I got through burn out I tell someone in my life (if I’m at school my friends. At home my mom) and my friends (who follow me on dex) will remind me to correct if I’m high and if we’re getting food together to dose. If it’s my mom she becomes more hands on and will count carbs and dose me (yes even with a pump she’ll do it for me). So essentially as much as it sucks it’s just something you have to accept and to get a support system for times when it’s to much to handle. Ik there’s also therapists who specialize in chronic diseases like T1D so that might be something to look into!
Yep. Accept and manage and move on. At least we have the opportunity to manage it. When asked why I think I'm the only one in my family to get Type 1 diabetes my answer is because God knew I was the only one strong enough to handle my shit.
I complain. I complain so much.
Meh it's not worse than any responsibility you already have in life, except you're the beneficiary.
I was diagnosed type 1 and Hashimoto’s at age 8. Rheumatoid Arthritis at 27. No you wouldn’t rather have that, trust me. Diabetes at least I have tools and decisions I can make to keep myself healthy. I have some control. Rheumatoid arthritis is more like let’s take this combination of drugs and throw it at the disease and hope to god my body responds. And then who in the hell knows how many years you will get out of that combination before you have to find new meds. I got lucky with one grouping and got 8 years. The next combo I only got two. Bridging to new medications is hell. I’m now an insulin resistant type 1 because of prednisone. 6 months of misdiagnosis in the beginning meant by the time I was diagnosed with RA I was utterly crippled. I couldn’t dress myself without crying because the joint pain was that bad. Using a cane. Using a motorized cart to get groceries. Stares because I had a handicap placard in my 20s. But you don’t look sick”. Meanwhile I had joints I literally couldn’t bend because of how swollen they were. No energy but also couldn’t sleep. Once we did find a med combo I responded to after my diagnosis, it took over a year to feel even close to “normal”. I have all three and I cope because I have to. Is it exhausting? Yeah. The amount of time I spend with insurance fighting over prior authorizations is exhausting. I generally take it a day at a time because worrying about what might go wrong next will drive me crazy. But managing the diseases and trying to manage them well means I get to enjoy life. I don’t have full control over what RA is doing to my body, but I can limit additional damage like neuropathy and eye problems by keeping my diabetes in check. Having a Dexcom and insulin pump helps automate it a bit so that generally it can be a background concern unless I’m having an off day (I.e.infusion set went bad early or I’m sick and just not responding to insulin like I should).
Been t1 for 29yrs it’s just something you deal with. You can do it. Stay positive and never focus on the negatives set long term goals that are achievable and keep powering through it. You have a community here too to talk and vent. I never had anyone to talk to about being diabetic. Now I use this thread to really vent and talk about it.
Personally I battle with myself not to put a gun in my mouth ever single day because of this disease. But this is the cards we have bin given in life and the saying go's what doesn't kill you makes you stronger. Keep up the fight you got this
I feel for you, it really must be hard especially when you have no one to relate to with type one in the family. To make matters worse I would imagine that those that do have type 2 or know of those with type 2. Will throw some stigmatisation in your direction. For example "Should you be eating that?" your relative with type 2 manage to handle it if he doesn't eat those things. But of course, you and I know type 1 is a different ball game. The only thing I say is that you are the best person to figure out what works for you. As long as you listen to reputable sources for information and advice, recognise your successes, and what you could be doing better and importantly don't get discouraged and it is ok to feel frustrated it's hard to manage, there is always another way to tackle the issue or even tweak a potential solution to make it work better. From the social aspect, you are going to feel alienated but share what you have learnt and your successes. They will pick up on how hard it is for you and become more empathetic.
What be would worse that I didn’t have a way to deal with it. It would be a horrible existence and death. I do do life to the fullest more so than most non T1D because I understand how precious life is.
This is exactly how I felt when I was diagnosed with T1D this past November! It can feel really isolating demoralizing when something so overwhelming and life changing as this diagnosis hits you out of nowhere. However, I want you to know that you are not alone in this; we have an entire community here on Reddit to support you, and there are so many people who are also dealing with this lifelong struggle. There will be good and bad days (sometimes mostly bad days), but it is something that you will learn to live and accept – it may take time, and I haven't yet even entirely processed this diagnosis for myself, but I have come to believe this too. Just make sure that you take good care of yourself, take the advice of your endocrinologist with regard to insulin dosages and diet recommendations, and you got this! :)
I too am the first in my family and not many cares too much to learn about it. I’m return I left home a few month after dx and didn’t take insulin for a really long time. Now I have lots of irreversible damage. Stay diligent in your disease
If you monitor your diabetes and take care of yourself, you can live a very normal life. And our diagnosis isn’t a death sentence. Unless you ignore it. And with the break through they’ve had, even in the last 20 years, you can have a cgm and an insulin pump, and only need to input when you eat. Out of all of the diseases that there are in the world, diabetes is a lot better than a lot of them. We can lead normal lives, it is completely manageable. You don’t need to go get dialysis, or chemotherapy, won’t lose your hair. You just need to manage what you eat, take insulin and watch your blood sugar. I’ve had diabetes for 25 years, and after a little bit, it’s second nature and you don’t even have to think about it anymore. And you are not your disease! You can still do everything you want to do.
Personally I don’t see it in a similar way regarding Decisions etc. Yes it’s factually true but so are the decisions I would have otherwise had if not t1d, such as what time shall I eat breakfast, what shall I wear today, timings for transport etc etc Having. To do the washing up They’re all a pain if i were to view it like that but just part of life I’ve never seen diabetes management as anything other than this personally. Sometimes I think about what I could have which is worse sometimes I just have to drink Lucozade which is a tasty soft drink and really not a drama per se Yes it is a chore sometimes but it’s not that terrible compared to other illnesses So in some ways I’m thankful for what I have got that is still good This is just for me and my views on it Although, caveat, I do hate trains, they do get to me actually The trains in England are absolutely atrocious and extremely expensive
There is no dealing with it. My mindset is that I am just living my life. Just like your mom and sister are living their own lives. No two people have the same exact life as each other. Management of my life looks different to those around me, and I have accepted that. As soon as I start wishing that things were different, life gets hard. Do I wish that I didn’t have diabetes, maybe… but then I wouldn’t know who I am, my experiences wouldn’t contribute to the successes that I am working toward. Just remember, you can literally do anything you want to. The part to remember is that the steps are different. Some people may say it’s hard, and it is. There’s no sugarcoating it. But that makes you strong in turn. Every low in the middle of the night, every long lasting high or DKA episode is a battle. But then something happens, you start winning those battles. And each time they happen it starts to feel like less of a battle and more like tying your shoes. It takes time. But hang in there, vent when you need to, listen to your endo, and then you take over from there. Remember, you’re never going to be alone. Maybe even one day you could be the one to find a cure. But that all starts with the daily finger poke, and correct dosage for that first meal of the day. One step at a time my friend!