Type1 for 19 years and struggling

Hello Everyone! I’m extremely new to T1D forums but not necessarily to type 1…I’m currently about to turn 22 and was diagnosed when I was 3 years old, going on my 19th year with diabetes. I have struggled a very long time and as I’ve gotten older the addition of chronic anxiety and depression has only made this fight a lot harder. I guess you could define me as “non compliant” (my therapist and I aren’t fans of the word). My entire life I have gone through a cyclical pattern of not taking care of myself (not checking Bg, not bolusing, lying about Bg) and then having a major breakdown and trying to get myself back in line. I have only had a A1C below 7 once in my entire 19 yrs and right now I am scared I might be at the highest it has ever been in light of struggling through COVID. I do not have a great relationship with my Endo and our appointments last 15 min. I feel like I am being churned out and given up on when I try to explain the mental exhaustion I go through every time I even try to check my Bg. I am terrified to go to the Endo and it has been a few days since I have checked my Bg(sometimes I blindly put in a Bg and carbs into my pump just to have insulin on board). Tomorrow I plan on putting on my CGM but the need for calibration and checking Bgs always sends me into a spiral. I feel very alone and as my senior year in college is about to start I’m really scared I won’t be able to take care of myself. I feel like I see other T1D veterans or people my age and no one ever talks about non compliance or wanting to give up. If anyone sees this and could give me any words of advice I would greatly appreciate it. So sorry for the long post, it seems like the tip of the iceberg for me!

Hi @als8941 and thank you for writing in. I too was 3 when I was diagnosed - I’m a late baby boomer now so I hope I don’t sound like your mom (or - gulp) grandma.
It can be hard to be compliant. Back in the day that meant keeping to a very strict regimen of eating at precise times, eating a very small selection of foods, and testing urine for sugar.
We now have tools at our disposal to help us live happy, healthy lives, where compliance means taking care to cover the carbs we eat. I’m not saying anybody should devour half a pie, but if you have a sweet tooth or a taste for pasta, compliance means calculating the carbs and bolusing for them, and using the tools we have wisely.
It can be difficult knowing you have a condition that will be with you your entire life (mine too). But that “life” is what you make of it. There are diabetics in music and acting; politics; professional and Olympic athletics; business; and most important parents and regular people like ourselves who work through it day to day.
Although you’ve had diabetes for many years it might be worthwhile to see a counselor to help you work through your anger, frustrations and other emotions, and help you find a way to enjoy life. With COVID it may be something you have to do online, but help should be available for you and I encourage you to take it.
Second, and equally important, is finding a doctor you work well with, who respects you and encourages you in self care. If you don’t care for yours - or you feel they don’t care for you - fire them! Take your body and your business someplace else, even if the person you’re seeing now has been your doctor since you were 5.
I’ve had visits where I knew my numbers would be lousy. I hadn’t been doing what I needed to, and I knew doctor would not be happy. They were going to know anyway, so I just took a deep breath, put all my cards on the table and told them up front what I had and had not been doing. There was some admonishment of course but I had a good relationship with them so they set me back on track.
I don’t need to tell you that blindly entering numbers is not helping. You have tools at your disposal, and while what they are showing you may be scary now, you can use those numbers as a guide to make things better. BTW, my A1Cs have always been in the mid 7s - several months ago I was shocked to have one in the upper 8s so don’t feel you are alone. The numbers are there to guide you, not judge you, and it sounds like you do want to do better, so work with your doctor - a good doctor - to put changes in place. A fresh start with someone new may make all the difference in the world.
You’re an up and coming senior - congratulations! Your world is ahead of you. You have hopes, dreams, aspirations, perhaps a career path in mind. There’s no reason for diabetes to keep you from that. If you don’t feel that way it is because you’re not caring for yourself. Once you do I think you’ll have a whole new outlook. I know you are managing anxiety and depression. I know about the latter from close family experience, and a little about anxiety from what friends have shared with me. Like diabetes, treatment for those is key, including therapy which you are already getting. Keep up with your therapy. It may be painful but that doesn’t mean the therapist is not good. However if you don’t feel that therapist is helping, find another and another and another until you find one you truly connect with.
If you haven’t already done so check with your school to see if there’s a support group for students with diabetes - or if they can put you in touch with other students willing to connect with you. Due to HIPAA I imagine you would need to have them give your name to them rather than vice versa but there’s probably a way.
I’m sure you will be getting feedback on the forum from others - including ones closer to your own age. You have found a community of people who care, and who want to help you care for yourself. Please know you are not alone, and stay in touch.

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hi @als8941 When I think back to the 20+ years when I didn’t check my blood sugar, at all, I recall how scared I was of finding out it was too late. I always associated not checking with not having diabetes… in fact most of those 20 years I took 1 shot of regular plus NPH insulin because I didn’t want to think about having diabetes and not shooting during the day and not testing was part of the smoke screen and the whole, or entirety of my denial.

I equated not dealing with diabetes with not having diabetes, I didn’t have the strength to do anything different, and any time I thought about complications and having to deal with diabetes I would have an anxiety attack. When these anxiety attacks intensified, I sought out chaos in my work and in my personal relationships. The more chaos and the harder I worked, the more it dulled the “pointyness” of my anxiety. I worked myself to exhaustion, and made chaotic relationships part of my everyday life because I was afraid to face the fact that I had a chronic incurable disease ,and if I didn’t take care of it it will kill me.

I also, for some time, abused drugs to help me not concentrate on the problem. I switched from using drugs to working too hard, and added in a drug-addicted personal relationship, because I couldn’t always work hard enough to distract me from concluding I had to confront my diabetes.

When I was done, when I couldn’t avoid dealing with this anymore, then I dealt with it. One thing I had to do was forgive myself for getting sick. No it wasn’t a punishment. No it wasn’t because of something i did, or something I didn’t do. Diabetes just is. It is a fact. just reality, zits and all.

When I started to heal my self esteem I found out that blood sugar is a number, not a personal statement of my failure, not condemnation of my morals. it is a number and all it does is tell me to drink juice or take more insulin or “steady as she goes don’t touch nothin” that’s [insert a very bad word here ending in “ing”] all it is.

My a1c was 9% when I got up the nerve to check it. an a1c is similarly not a grade or a testament to the totality of your intelligence… its another [insert a different awful word here ending in ing] number and that’s all it will ever be.

my denial ended in my bankruptcy, ended in divorce, but it did not end my life, it did not end me. there were many pages to my story after that. there were the best and happiest and saddest and it’s filled with stories and moments of triumph and turmoil, and tragedy, and profound happiness and both unimaginable losses, and equally unforeseeable and beautiful new beginnings. I could not possibly have imagined nor expected or anticipated any of it. Guess what? That’s life if you have the guts to live it. Go have guts. you got nothing to lose: spoiler alert. the last page of your life? everybody dies at the end. Make the pages between right now and the end a story worth reading. Cheers and good luck

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I’m a relative newb to the whole world of T1D so not sure what I can add. The only thing I can relate with is finding an Endo you are comfortable with. My son was recently diagnosed and something just didn’t feel right with his first endo team. We have since switched, but its still to early to determine how comfortable we are right now (Early indications are not very comfortable as they are not responding to level check emails we were told to submit every two weeks.).

The thing I look for in seeing the endo is a sense of calm in that we appear to be doing everything we can right now and doing it fairly well. The reassurance, guidance and support from the team is/was/will be invaluable.

Joe and Dorie have helped me a great deal since hitting this forum so I’m sure you’ll find great guidance in what they have expressed.

Like everyone here as told me when I was scared to death with my son’s condition - You got this! No matter how insignificant you think a question or concern might be - post it here!


Hi @als8941. Just checking in to see how you’re doing. I guess you’re getting ready for classes so write back when you can. How’s the in person vs online mix looking at your school?

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Hi Lauris,
I’m really sorry you’re having such a tough time. I’ve been diabetic 27 years and have experienced burnout and anxiety, but not to the level you’ve described. I did have two thoughts reading your post, though, that I hope will be helpful to you. First, does your therapist have much experience treating diabetics? It might be helpful to find someone who specifically treats diabetes burnout and who can help you develop tools, like SMART goals, to stay on top of your treatment. Second, what type of CGM do you use? I’ve been using the Freestyle Libre for a couple years now and it never needs to be calibrated. Every now and then I’ll double check a reading by checking my blood sugar, but for the most part I feel comfortable with the numbers it gives me. You only need to scan it with the reader or your phone about 3 times/day to save the data for your doctor. Maybe that would be more manageable for you? Even if you can only manage once a day, any data’s better than none. When it comes to diabetes management, it’s better to do it incompletely than not at all. It’s ok to be imperfect.

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