Hi!
(This is my first time reaching out on a forum - so I’m not quite sure how it’ll go!)
I’m sixteen now, but was diagnosed with Type 1 Diabetes as of 2020 - as a fourteen year old. Since, I’ve undergone a few different systems and managements, and have now ended up with a CGM and insulin pump.
A little while prior to being diagnosed, I struggled with mental health + body image.
Since then, I have consistently found it difficult to manage this with having diabetes, and this has resulted in a prolonged cycle of disordered eating, including eventual binges (causing high BGLs from under/innacurate-bolusing), and lotsa guilt!
I haven’t explicitly told my parents, (or any friends) about struggling with food, and although I’ve had periods where I feel alright with eating more freely, (i.e., higher-carb), afterwards I have feelings of extreme guilt and regret from taking increased units of insulin, all of which feels amplified with caloric intake being tracked with food diaries for carbs.
I was wondering if anyone else has had similar issues with ‘insulin-guilt’, worry around diabetic stigma, and/or disordered eating with diabetes. If anyone was willing to share any general advice around the topic, it’d be much appreciated as it’s difficult to talk on these things as a young person with a lack of people in my life who have T1D, or subsequently, who have had issues around food/insulin/guilt. :^(
Hi @G33 and welcome to the forum. I just reached 60 years with diabetes so please forgive me if I sound like a parent or (gulp) grandparent. I don’t mean to, and hopefully you will hear from forum members your own age.
I just want to say, keep in mind that when people without diabetes binge (or just plain eat), their bodies automatically deliver the right amount of insulin, whereas we have to do some calculations and perhaps some mental gymnastics. One thing that might help if you tend to binge on the same foods, is to set them as favorite/custom food in your tracker, or keep a list so you can find them quickly and have the carb count ready on the spot. The Glooko app is nice but finding foods when I need them can be tedious, so a shortcut like that can help.
Years ago my I/C ratio was about 1:20; now I’m 1:6 or 1:8. When I got down to the single digits I felt like something was wrong with me, but my doctor reminded my that’s just how my body functions - our bodies simply need what they need.
I do encourage you to open up about your diabetes and your eating disorder. Check the Resources tab and you might find local chapters where you can meet others with Type1 (hopefully some in your age range😊) and some may share your eating disorder as well - you never know.
This forum is very supportive, but we in addition we frequently suggest getting help from a mental health professional - it’s a tool that can be invaluable. Not everyone with an eating disorder acknowledges that they have one: you’ve taken the important step of taking ownership of yours so I hope you will consider taking the next one on that journey so you can learn how to deal with/manage/eliminate the guilt, in addition to connecting with new “friends” here.
Wishing you all the best, and I hope you will become a frequent contributor to discussions!
@G33 While we would probably all value being able to be self-sufficient and “do it all” ourselves, no one, including you, should feel shame in getting help when needed. Our perspectives are vastly different, I’m 68 and you’re 16, so forgive my “older” view… You’re pretty young at 16 bordering on becoming an adult, so give yourself a break and take into account your age, experiences; seek the help you need approaching your treatment. You’re on the threshold of becoming independent, but even adults (even old folks like myself) need help at least once in a while. You should be congratulated for recognizing the issues; now, take the next step of getting whatever help you need to implement actions to address them. That may be talking with your parents if you think that would be a positive step, or discussing the issues with your doc if you have a regular one, or contacting a mental health group that is supportive. As the T1 dx is in the mix, you may benefit from contacting the local JDRF chapter and getting referred by them to helpful physical health/mental health providers that understands that part of the equation. The one thing not to do is nothing; get the help you need, make a plan, and do your best to stick to it to do what you can.
@G33Welcome Gee to the JDRF TypeOneNation Community Forum, and thank you for introducing yourself. You are more than welcome here to read, learn, post comments, and ask questions. I can’t respond to all you ask, but I’ll share what I remember living with diabetes at your age - 66 years ago - and what I’ve learned through the years. A couple of points, first:
A CGM and a pump can be awesome tools, especially CGM. But, keep in mind these things are not magic; you still need to keep that 6 billion cell electro-chemical PC that is located between your ears active and well-tuned.
Your body will always need insulin, the “right amount” of insulin. The correct amount of insulin required depends first on the foods you eat and your level of activity; then consider about a gazillion other things that affect BGL. The “other things” you will learn over time and may be unique to you. Try not to deny insulin to “cover” the food you choose except when the carbs are needed for your activity.
The CGM - the best diabetes device I’ve used. But a suggestion - do not live your life to make CGM readings look “good”. Use the CGM readings as guidepost markings to assist you with the many diabetes decisions you need to make each day - as time and experience moves along, these decisions will become almost automatic.
Now, this might sound contradictory to what I’ve said. Your pump is great for throwing in a little more insulin to cover that binge eating, BUT, danger!!! Avoid stacking insulin that may cause very low BGL. The ease of taking insulin with a pump has contributed to a form of diabetes called “Double Diabetes”; people with autoimmune diabetes, TypeOneDiabetes, have been known to drive themselves Obesity Diabetes, one of the half-dozen diabetes types that fall under the Type 2 umbrella. the DD gets complicated to manage.
Gee, I hope that I didn’t write too much. I’ll close with something I’ve learned - you can enjoy life, live a full, active and productive life and don’t let diabetes hold you back.
Hi @G33, I’m Lise, I’m also 16 and also diagnosed in 2020, and use the tandem and dexcom combo.
Sorry to hear that you’ve been struggling with this. I haven’t ever experienced disordered eating, body image struggles, or mental health issues. But I’ve heard other T1D teens (and adults!) say that they’ve struggled with all of those things. And it’s a possibility that I might in the future.
Let’s face it- as T1Ds we have a unique relationship with food. It’s tough. It stinks. I don’t really have anything else to say about that beyond what others have already suggested. I like having a variety of food options available, some high, medium, and low carb. Also keeping in mind fat/protein (maybe complicated relationship is a better word than unique!). I love low carb snacks like veg, fruit, popcorn, nuts, jerky, sandwich meat, gum, etc for when I really want to eat but don’t feel like taking insulin.
For meals, you could try aiming at eating like 45-75 carbs a meal? Obviously keeping it flexible- if you eat 90 carbs because you wanted an extra scoop of ice cream or a slice of bread don’t beat yourself up. I’ve found that usually helps me keep a healthy balance of carbs and other nutrients and it may help you find a healthier mental space???
And take the time to count carbs. It’s a pain and a bore but it helps with the guilt.
Insulin “guilt”… I don’t experience that on a day to day basis but when I was diagnosed I gained like 30 lbs in a month and a half. My insulin doses more than tripled accordingly. It took us nearly 3 months to find the right insulin doses for me, changing doses 1-3 times a week. It was brutal. I was under the impression that I was doing something wrong because I needed more insulin. I wasn’t doing anything besides turning from a starving, tired, super sick kid into a healthy normal weight energetic kid. Recently some friends and I compared how much insulin we take each day. Surprise surprise, there was a pretty decent spectrum because our bodies are different, our activity levels are different, our diet, sickness, biological sex, age…. on and on. One of my friends felt really guilty that she was taking “so much” insulin until she found out that I take 5 u more than her an average a day.Your body needs insulin just as much as it needs water, right? Have you ever gone on a run, come home, and felt guilty for drinking a few extra glasses of water? Nope. Your body needs insulin. It’s gonna need different amounts of insulin throughout your life. There won’t always be a visible reason, it’s not always fun to have to give yourself a whole bunch. But you’ve gotta do it. Shift your focus from how much insulin to something else- maybe feel guilty about using the same lancet for a week in a row!
Body image issues x CGM x pump = ahhhh. I’ve gone through times (especially when school starts or in the summer at the pool) when I’m so freaked out about people seeing my CGM/pump. (Besides my robot parts, I haven’t dealt with body image stuff.) as far as diabetes or any other body image stuff goes, people really just don’t notice. Think about it- how many times have you noticed if the kid sitting across the room from you had a bad hair day? Most people don’t notice you and when they do, they’re usually too obsessed with themselves to care about you. Might sound brutal but it’s kinda the truth. If they do notice and do care, it’s usually because they have a reason to care. 75% of people who have asked me what my devices are have said something along the lines of “nice! My dad also has a CGM that looks like that!” or “hey! Is that a dexcom? I’ve got one too!!” Or started asking me more questions about diabetes because they genuinely cared about me.
If people ask you what your device is and they don’t respond nicely just walk away or have a comeback ready. One of my T1D friends tells kids at school that she’s a grenade when her dex beeps. I’ve gotten pretty comfortable with wearing my dex/pump site on my arm and 99% of the kids at my school don’t notice. At all. When they do, they’ve usually already had conversations with me about other stuff so they can see that there isn’t anything weird about me. If your friends do make mean comments, tell them the truth and then find some new friends.
Like @Dennis and @wadawabbit and @Tlholz have already said, you should tell your friends/parents what you’re feeling/thinking. If you think you need it, try finding a counselor.
You are not the only one with these feelings.
Ps. Please tell me if I’ve completely misunderstood your situation (
Btw, @G33, we’ve got another page going on the forum called ‘looking for T1D teens’ that you may want to check out if you want to connect with other teens on this forum. If you post something you’ll probably get a response within 24 hours. https://forum.jdrf.org/t/looking-for-t1d-teens
I’m in my 60s and just diagnosed this year. I have a CGM and Omnipod. I just wanted to say this isn’t easy and it’s very unpredictable. I’m so sorry you have the other issues to deal with in addition. I hope you find some T1d peer support. That will be very helpful. I’m thinking of you and sending good wishes. Take care of yourself and try to celebrate the good days.
Celebrate being almost a regular person!!! You just have to input carbs in a pump. There should be ZERO guilt!! Think about this, we have a condition where there is ONLY one solution, insulin!! We do not have cancer and have to guess which solution works. We do not have a disease with no cure. We have Type 1 diabetes. Insulin is the cure. I am almost 67 and was diagosed at 13!! No complications at all. My yearly eye exam always gets me a “I wish all diabetics were like you!” And it is the pump, CGM, and doing what I need to do to eat whatever I want. You got it good!! Celebrate and live a norma life!!
Hi! My name is Emma, I’m 18 years old and I’ve had T1D since I was around 12. I just wanted to reach out and let you know that I hear you and I completely relate. I have gone through many periods with similar issues with mental health, body image and insulin-guilt. I’m honestly still struggling with most of that currently, so I don’t quite have all the answers or the best advice . One thing I can recommend that has personally helped me is if you have access and are able to, try to connect with a psychologist who specializes in T1D. It was SO helpful to me to be able to talk to someone about aspects of my mental health and medical health that I honestly held with too much shame and guilt to talk to my loved ones with. Im not sure if this is an option for you or something you would be open to but I would really recommend it for the mental health aspect of T1D. I would also love to talk if you want a T1D friend or just someone to talk to!
I’m not a teen, but do relate to what you’re saying. I have been TI for over 20 years and have been fortunate enough to have very informed and compassionate healthcare providers, especially Endocrinologists and CDEs. Some of them have also had TI and that helps a lot.
I also have been inspired by viewing and attending conferences sponsored by Taking Control Of Your Diabetes. It’s by Endocrinologists who were diagnosed as TI as teens, so they really do know how it feels. There is much offered in support and information, with an abundance of humor and music. They address what most of us are thinking about managing TI.
I recently attended a friends for life conference in Seattle and it was so amazing to see other people of all ages, 2 years to 80 years, with CGMs and tubing dangling from pockets. It was nice to feel normal counting carbs and treating lows/highs with the other people there.
A friend and I ate 2 pieces of chocolate cake during lunch…. It was delicious!
Hi @808IUFan . I feel the need to make an important correction: insulin is not a cure - but thankfully it is a treatment that works very well overall. We’ve been hearing that a cure for diabetes is a few years away - for many many years:clock1:. I’ve stopped listening to the prognostications but keep up with the advancements while we wait. In the meantime, I’m thankful that we have tools that allow us to primarily manage our condition at home or wherever we may be, rather than in a hospital. That itself is a blessing .
Right I was trying not to say cure. I meant treatment. There is only one for Type 1. You do not need to try this pill or that pill. It is only Insulin.
The numbers are the numbers and they are not anything special or different. These include your BG, the insulin you are giving, and anything else you are having issues with. Since I was diagnosed at age 2 I can remember feeling some of these issues myself. The best experiences that I had as a little Type 1 were the summers that I spent at a diabetes summer camp. I don’t know if there is any around your area but that was one week that I felt like everyone there and not different.
Hi G33,
I was diagnosed with T1D over 50 years ago at the age of 2 1/2 years. So, I am much older than you, but I did live with this disease through my teens. At one point I decided that I didn’t care anymore about my BGL. I ate, I binged, I gained weight. I finally recognized that I was depressed (although not “clinically”) and thankfully, a friend of mine recommended I speak to a psychologist she knew. He was wonderful and really helped me!
Feeling this way as a teen is not unusual and help is out there! I’d be happy to talk to you, if you want, but I am not a professional in this field.
As far as counting carbs goes, when I was a teen we still used the Exchange System. So, one slice of bread equalled one carb exchange (or @ 15 grams). After meeting with the psychologist and at his recommendation, I finally expressed my frustration to my endocrine. He told me to first figure out how much food I needed to eat in order to feel satisfied until my next meal. Once we figured that out, we then looked at whether or not I was making healthy choices, and finally looked at how many calories I was eating at each meal. With this info, my endo figured out how much insulin I needed to take for each meal AND my insulin-to-carb ratio. With this iinformation I was able to get my BGL under control and lose the extra weight I had gained. You may ask how he got me to do this. Well, he basically told me that I had a choice to make. Either I could keep eating the way I was and continually have high BGLs and end up with complications down the road (not right away, but guaranteeing that it would happen), or I could choose to get my BGL under control and live a long healthy life.I decided on the latter and have now lived with T1D for over 58 years with no complications.
So, I would say that first you have to choose how you want to live and then find the support to help you get there. From what you wrote, I’d say you’re half-way there, and that is great! How to continue? Places like JDRF are a great way to start. Go to a Summit or a Chapter Meeting so that you can meet others with T1D in your area. Ask them who they see for their diabetes. For me, the endo I went to was highly recommended by a girl I met in my area. She was right! Keep in mind that if a doctor you go to isn’t helping, you can always see someone else. Or, if you are not comfortable talking to your current doc, find another. This is probably the most difficult part of the process, but it can be done. Have faith! Plus, all of us here are rooting for you! You can do this!
. One thing I can recommend that has personally helped me is if you have access and are able to, try to connect with a psychologist who specializes in T1D. It was SO helpful to me to be able to talk to someone about aspects of my mental health and medical health that I honestly held with too much shame and guilt to talk to my loved ones with. Im not sure if this is an option for you or something you would be open to but I would really recommend it for the mental health aspect of T1D. I would also love to talk if you want a T1D friend or just someone to talk to! 
. I’ve stopped listening to the prognostications but keep up with the advancements while we wait. In the meantime, I’m thankful that we have tools that allow us to primarily manage our condition at home or wherever we may be, rather than in a hospital. That itself is a blessing .