How do I navigate the world/life with Type 1? - Diagnosed at 22

Hello everyone, I could really use some advice and tips on how to navigate the real world with type one!

I am 22 years old and was diagnosed with Type 1 in March (2020) days before my state started to quarantine due to Covid-19. Since March I have only been out and about to go to the store and doctors appointments so I have not exactly experienced living with Type 1 beyond the comfort of my home and a parked car, or the passenger seat, where I’ve learned to test my blood sugar on outings. That being said, I am a commuter college student and will be attending some of my classes on campus in the fall, and do not know how I am supposed to check my blood sugar in public or where to go so I do not shock anyone around me. As far as injections, I am still honeymooning so I only do one basal injection a day, but I know the days of dosing beyond my basal are approaching and do not know how to navigate that on campus or in public either.
Any tips, advice, or tricks on how to take care of yourself with type one in public would be super helpful! Thank you!

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I use a pump and continuous glucose monitor (or CGM) now, but when I did take shots and do fingersticks I tried to be discrete. I know people who are scared of needles or the sight of blood, so in the interest of being sensitive I tried to do them out of sight. I’ve done fingersticks “under the table” when eating out, as long as I was at a take away from other diners, or in a booth that offered a little privacy. I know some people feel that as diabetics we should do what we have to where we have to. Everyone needs to decide for themselves but for me it was a matter of being sensitive to this around me. If I didn’t have a “discrete seat” I went to the restroom - not ideal because you may not feel it’s clean enough but I did it quickly and went back to enjoy my meal and my compsny. BTW, I highly recommend a CGM - Dexcom’s G6 does not require fingersticks and you can see your results with a quick glance at your receiver, iPhone or Apple watch.
As for shots I usually went to the restroom when eating out. It can be hard to be discrete with that unless you have the right kind of seating. I took injections in college and like you was on one shot a day at the time - took it in the morning and was done. When it came to multiple injections - I was working by that time - I could draw up my dose and jab myself quickly at my desk or in my cubicle and no one was the wiser. I did have someone walk in on me once as I was jabbing myself in the thigh, I just explained what I was doing and that was that.
I attended a small college with small classes, and if you needed to step out you simply asked to be excused. It could be as simple as that when you need to take care of things.

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I was very close to your age when I was first diagnosed myself. I experienced the whole range of reactions to my injections and testing needs, both positive and negative. I suggest if you are nervous that keeping a stash of alcohol wipes with you and finding the nearest restroom stall for privacy. I am now a pump and cgm user and this allows a much less noticeable treatment regime.

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Hi @megang,

I was a restroom tester/injector, as others have mentioned. I often tested and injected in public if I had to, just by turning away from others as best I could. Long term, once you’re beyond the honeymoon, a pump with integrated CGMS is in my opinion the best solution for a long, healthy life with T1D. Right now, the Tandem t:slim X2 insulin pump, integrated with the Dexcom G6 CGMS, is the best technology available. You are coming into the T1D world at a time of significant technology improvements. DiaTribe is a great source of T1D news and tips, https://diatribe.org/.

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I’ve heard the some colleges have support groups for diabetic students. Check with yours and see. If there’s no support group per se you could ask student health if they know of other students with diabetes who would like to connect with you and share tips. I’m sure HIPAA would not allow the to give out other students information but they might share yours if you’re willing. Instructors too.

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hi @megang Megan, and welcome to Type One Nation. Wow so March 2020 and COVID and Type 1. I have to say that next year will most likely be a better one for you.

When I was diagnosed (about 40 years ago) I was very angry. Getting to a place of acceptance can take a very long time so my first piece of advice is to go easy on yourself.

I use a pump too but at first (well the first 27 years anyway) there was NO WAY i was going to strap a machine to myself, Didn’t like the idea of that kind of a badge for the world to see. You can use an insulin pen RIGHT THROUGH your clothes (I hope they showed you that) so . it’s less traumatic to do an injection in public that way…

Testing I can do pretty easy, I just kind of half use my backpack when I am travelling.

as far as making it part of you life, this is only accomplished by repetition. it’s a new sense you have to develop, and it takes about a year. Once you put in the time, it does just become part of the routine.

For most cases, you are only needing to do injections for eating and if you need to correct a high blood sugar, the other thing is if you are low you’ll need to eat carbs… so you will have to carry carbs

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Hi @wadawabbit,
Thank you so much for your advice, you made everything seem so easy and not a big deal. That is very encouraging for me to hear! I do use the Dexcom G6, but I find I still have to do a fingerstick to check here and there because sometimes it has been very inaccurate :confused: I also had not thought of “under the table” fingersticks, that is simple and discrete, I will definitely be doing that!

Hi @jdiesel,
I do not even know what to expect when it comes to how people will react, but as you said there may be positive and negative reactions and that’s ok. It sounds like running to the restroom to check blood sugars and do injections is always a safe go to and a pump and cgm are the “discrete” way of checking/dosing. Thank you so much!

Hello @mikefarley,
Thank you for the advice and encouragement! As far as checking/injecting in public, as you and others have said, if I have to do any of that out in the open, I can be discrete about it and turn away from others.
I’ve heard about pumps but haven’t really looked into them just because I am on such a low dosage. That is extremely helpful to know that they are a huge help in living a long and healthy life (I’d very much so like to live a long healthy life with T1D!) Thank you as well for the link to DiaTribe, I have checked it out and there are many great articles and resources on there.

Yes! I sent an email to the coordinator at my college for the College Diabetes Network and I am awaiting a response.
That is a really great idea to reach out to the student health services and even my instructors, any connection on campus would be super helpful!
Thank you!

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Hello @joe,
Wow, thank you, this is really comforting advice I needed to hear.
I am very hopeful next year will be much better as well!
That is a really great idea to use a backpack or bag to discretely test. And as far as lows, I have learned to carry carbs everywhere.
I have read you can inject through your clothes, I actually was not taught anything but how to prick my finger… The rest I have researched/read or somehow figured out, so I do not know if I am missing pieces on how to handle T1D day to day beyond my quarantined home.

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It sounds like you’re doing a great job of learning on your own. Diabetes is about self care, so the more you learn the better. But I am concerned that you haven’t learned the basics. Hopefully your doctor is an endocrinologist and has a diabetes nurse educator on the team. I would encourage you to meet with them to make sure you’re getting the knowledge and training you need.

Hi Megan, a few more words of encouragement from another “long-timer”. Many, if not most, of the “Doctor Me” attitude that you will develop to help you to live many productive, and active, and HEALTHY years while managing diabetes will not come from a “diabetes book”, from a nurse educator, or from a doctor, but rather from self-discovery and talking with and observing what other people of diabetes are doing.

For instance, I first observed taking insulin through clothing when out to dinner with a neighbor who did that - at that time, I had been taking insulin just through bare skin for well over 50 years. Injecting anyplace other than legs or arms was introduced to me by a teen girl who was babysitting our kids - about 20 years after my T1D diagnosis.

Now to swing back on Topic and let me offer a suggestion for the question you asked: Navigating The World, and Life with diabetes. My thoughts, my way for living life, now in my seventh decade with diabetes, is to think positive, have a “can-do” attitude, and for the diabetes part, decide what you want in life, how you want to live your life and MAKE the always-present diabetes fit in. In other words, you rule your diabetes and not let diabetes dictate. It is easier for me to write these words now than it was putting my “plan” into action.

I received my diagnosis on my 16th birthday, a little younger than your diagnosis, and during my first couple of years mostly observed the rules - then off to college, and into the work-world and I hid my diabetes and imagined, or pretended, that diabetes didn’t exist. My 7 year rebellion - in complete denial. In retrospect, I was a fool; I hope you are more mature than I was in those days, that you have set a goal for yourself and that you live a beautiful, active and fulfilling life. You are in charge!!!

And a belated Welcome to the JDRF TypeOneNation Forum! As you discover and develop new tricks for managing diabetes, I’d like to see you share them here.

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I would like to add a bit of caution to the “Dr. Me” wisdom I sometimes see on the site.
I don’t disagree with Dennis - who has more experience than I do - that we know our bodies best and learn from self discovery. But it’s good to keep in mind that our physician may be more up to date on things than we are ourselves. Their experience with other patients and literature may give them some guidance as to how certain treatments may or may not work with us as individuals. And as patients we may be so excited to try something that looks great, we may want to jump in with our eyes only partially open, missing some caution signs as we do.
It’s important to get guidance from professionals with training, and that applies even if you are one.
By all means, you must decide for yourself what you believe is best, but don’t forget you will need professionals: for prescriptions, perhaps to check interactions, to sign off on your drivers license, etc. Being “Dr. Me” is necessary, but not the only thing.

I did not really know till recently that it is kind of normal to have a diabetes nurse, some instruction, and more people on your healthcare team. I do have a really great endocrinologist I’ve been happy with.
I am really attributing the fact that I did not meet with anyone beyond my endocrinologist to the pandemic. When I went in to my first endo appointment (the day after my primary care doctor diagnosed me and sent me home to do my first injection, because they were trying to keep me out of the hospital due to covid) the office was cancelling all appointments and I was the only patient there. I thankfully figured out what I needed to without knowing that I was supposed to be taught any of this.
At this point I do not know what I do not know, so yes, I would like to find a diabetes educator and will be looking for one!

I’ve had a few tele-health appointments since COVID started - I guess that’s the norm for many things now. I hope your endo has or can refer you to a DNE that can instruct you by phone - perhaps it’s not ideal but better than nothing.
If I didn’t mention it before you might meet with a nutritionist as well, to make sure you are on track with counting carbs and estimating portion sizes, which you’ll need to do if you eat a Michelin rated college cafe😉.

Hello @Dennis,

Thank you so much for your encouragement!

As you said, I will learn a lot from talking with/observing others with diabetes, I really appreciate you sharing your wisdom about having a good attitude and not letting diabetes rule me! I have already learned many great tips from reading these responses and have felt reassured that I have been doing things right. And I see that yes, indeed, there is so much for me to learn from those who understand diabetes and the day to day much better than I do!

The “Doctor Me” attitude is also very helpful. I have felt like I have had to learn so much on my own, I do think it would have been beneficial to have some instruction in the beginning, but I now see that so much of what I have learned is not necessarily something I could have been taught. There has been a lot of trial and error, especially with food, exercise, medical devices, and routine. I certainly have much much more to learn on this journey, it’s just the beginning!

Thank you for sharing about your journey, it is extremely helpful and encouraging to me to see that having T1D is not something that will get in my way of living a very healthy and fulfilling life!

@megang: I’ve been married to my T1 hubby for 43 years. At this point in time, there is no embarrassment left. People may stare (or better yet, ask questions), but I would say to just go about your business wherever you happen to be. A person at our local beach noticed my husband’s CGM and insulin port. She had been sort of hiding behind her beach coverup. Suddenly, she tore it off and ran into the water! When returning, she told him that she had just been diagnosed 4 weeks earlier and was embarrassed about her CGM on her body. Then after seeing his, she thought, “What the heck? Why am I hiding?” She had a smile on her face the rest of the day as she played in the water! Another guy walked up the hubby recently and asked if it was a heart monitor! It gives people the chance to be educated and enlightened. Before my husband got his first pump (early 2000s), we were talking about it in our local dive cafe. In the booth behind us was another couple. When they got ready to leave, she turned to us, lifted up her blouse and showed us her Medtronic Paradigm pump and port! Needless to say, we were stunned, but she was very chill about it. She said she had heard us talking about it and wanted us to see what it looked like. We were able to hold the pump, touch the port and tubing and ask a million questions while she showed us how it worked. I am forever grateful to her generosity about something considered private!! Today, my husband checks his blood right at the restaurant table in front of people, or does it at a picnic table at the beach. People sometimes stare, but you just need to get a thicker skin and not be ashamed. It will take time. But education is paramount. People ARE curious and being honest will mean they and their children won’t think twice in the future about seeing pumps, injections, blood testing, or whatever. Thank goodness for technology and all it brings! Best of luck and chin up…it will be okay. Really.

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Hi Megan,

Glad to hear that you discovered the College Diabetes Network. They have some great resources–here is a link to a list: https://www.tfaforms.com/4703785 (The student guide has a lot of practical tips). Also check with the Office for Students with Disabilities at your college. It is easier to have your health conditions documented ahead of time and never have to use their services than to miss a test due to low blood sugars and then try to back track with professors for accommodations. Another good resource is JDRF–here is a link to their page for newly diagnosed people: https://www.jdrf.org/t1d-resources/newly-diagnosed. Finding emotional support is very helpful–especially as you embark on your new college adventure. Good luck with school!

You are very welcome, Megan @megang. Trial and error may be your greatest teacher. Keep in mind, that I’m not a medical professional and that. My suggestions and tips are from experience. Although, doctors occasionally call me in for consultation for advice for their diabetes patients.

What i didn’t mention before, CHANGE is the one CONSTANT in diabetes management. Please don’t think that suddenly you have this thing mastered. Just when you may think that your insulin dose is perfect, the next day it may not be right for an exactly same meal.

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