I’ve basically been avoiding my friends since dx about 8 months ago now. i had lost about 15 lbs in the 3 months leading up to it and things were going great as i had no other significant symptoms. then my annual blood work changed everything. first, i was dx’d and treated as T2 and that made me lose more weight and get much worse for the next 3 months while i kicked and screamed. Once i eventually got cgm, Insulin and the works, i entered sorta honeymoon and i’m doing well with just basal and small dose of ozempic and occasional corrections. I have taken up new activities and have no trouble making new friends or talking about T1D to strangers but just avoid meeting old friends in person. Overall ive lost over 55 lbs and it is very visible, its hard for them not to be concerned. they’re all great and not judgy or telling me what to eat, etc. They just want to know if i’m doing ok now, but i don know what to tell them - my a1cs are great, and i’m in decent range most of the time, and am technically fine, but just yesterday, my numbers dropped to a deep red during my swim, and bounced to an orange an hour after for no reason… i had a great time swimming, but i just don’t ever know if I’m ok at any time anymore cos who knows what my glucose level is doing?!?
Hi Pady,
It’s always tough talking to people about diabetes. Especially under the circumstances you’ve described!
Your last sentence, “i just don’t ever know if I’m ok at any time anymore cos who knows what my glucose level is doing?!?” is very relatable. People often ask me how I’m doing. It’s a tough question to answer because the reality is, with a chronic disease there is no cut and dry easy answer to that question. As I see it, I have got 4 possible answers.
- Fake it and say “I’m doing ok!” When you aren’t
- Don’t fake it and tell them everything
- Give a short answer that doesn’t tell them much like “I’m doing the best I can even though it’s difficult” and then quickly change the subject.
- Give them something short that does mean something, like “I’ve been having a har day but overall I’m doing ok.”
It sounds like your old friends are supportive. you should maybe consider opening up to them, maybe just 1 or 2 at a time.
My oldest friends who’ve known me pre diagnosis are some of my best support system. One told me once, “I don’t think about you having diabetes very often because I knew you pre diagnosis. When you check your sugar now or beep or something I just know, ‘yep that’s Lise!’ It’s like the sky is blue. It just is.” And since I’ve let them see me when I’m high and low they know that I’m not always “ok” and they know how to help me if I need it.
Hi @pady87 . Your friends care about you and are concerned, as you would be if the situation were reversed. Thankfully they’re not trying to tell you “You’re diabetic - you can’t eat that!” - as so often happens with people who don’t understand Type1.
Things are going to happen with diabetes - that doesn’t mean you are not doing well in terms of caring for yourself in general, or how you’re feeling at the moment. You went low recently while swimming - and you corrected it and went back to living life. Take these unexpected events as lessons learned and think about what you might do to prevent them next time: if you use a pump you might adjust how far in advance to start “activity” mode; or you may need to eat a snack before you exercise.
As for what to say to your friends, you can tell them you’re feeling okay/pretty good/great overall, and you’re still learning what works but are making progress. And I hope you can tell them you are feeling good about yourself for the progress you’ve made in learning.
If you don’t know what your glucose level is doing look into getting a Continuous Glucose Monitor (CGM): I think it’s the greatest tool we have to manage diabetes - including pumps! A CGM updates every 5 minutes so you can see trends. They can be used with or without a pump.
Hi @pady87 it takes a lot of time to get used to t1 and the kinds of activities, and when you go those activities (iob, close to a meal, etc.) and what it does to your blood sugar. You will learn to trust your feelings and keep an eye on your CGM. You will learn tricks, like bolusing half if you know you will be active after a meal and how to deal with long acting insulin when you are more active. Like anything else, it’s a new thing and this process can take a year or more.
Regarding your friends, yea. It was hard to talk to some friends after my diagnosis. I thought the awkwardness was them at first, turns out it was me. For my close friends they all wanted details and for me to retell my story but it was too painful for me so I avoided them. Also, hanging with my oldest friends made me remember a time before I was sick which made me very sad. So I avoided them.
Grief is a weird thing everybody has to navigate by themselves. Talking to a grief counselor could have helped me but I took more of a “everyone please leave me alone” strategy which was not my best decision.
Hope it’s not too bad for you and you find peace with your friends 
Pady @pady87, you ARE NOT a diabetic, although you are a person living with diabetes - first and foremost, you ARE a person [with emotions and feelings]. So,
I suggest that when a friend or relative asks how you are doing do not compose your thought and response to say something about your real life. Such as, ‘I finally did my 6 mile off-shore swim in under …’, or, ‘exhausted, the surf made me quit after only …’. Thoughtful friends will understand that you are and want to be considered as a person, not a specimen.
On your other thoughts expressed above, others have provided effective insight and anyone who has been in this “insulin game” for a while will tell you it takes a lot of personal trial-and=error, so relax. I recall that you shared “misdiagnosis” and that probably added extra obstacles for you, but you are still in your first year. Think positive, set moderate reachable goals if you think they will help and then celebrate! Celebrate life and every day.
I do have a cgm… since I’m on honeymoon, I still make some of my own insulin… n the amt varies depending on whatever… so I bolus only for corrections if I’m eating a lot of carbs, like a birthday cake… basal amt is not high enough for a pump n very finnicky too, as even 1 extra unit leaves me chasing lows all day long sometimes… activity lows and highs correct themselves during recovery… I’ve learned to wait it out n not chase them… so I guess my rant was jus abt not having a simple answer, or a simple disease…
Yea… I’m just avoiding meeting ppl in person and talk to them in private when that’s no longer an option… it’s exhausting, but it works… @joe is right, the awkwardness is mostly created by me, not them…
Yeah… telling ppl I have type 1 is (un)fairly easier than when I was telling them I had type2… but you’re right, the misdiagnosis does make it a lot harder as it stirs up all the anger from that time…