T1d loneliness

I like that saying. Never heard it before. If you don’t mind, I’m going to use that.

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Hey Emet, don’t let the loneliness get you too down.

I know because I was diagnosed in 1958, after being in a coma and coming out of that coma with an incurable disease - T1d. It was called juvenile diabetes then.

You mentioned you had a problem with a coworker, explaining the difference between T1d and T2d. You should tell them it’s basically has to do with the amount of insulin put out by your pancreas. Keep it simple - tell them that only your Dr. knows your number and that’s the way it should be. T1d puts out a little to no insulin and a T2d puts out less than a normal amount of insulin, put out by your pancreas. For example - my Dr. did a blood test on me and found out that my pancreas puts out zero amout of insulin. I was kind of surprised about that but I know now that I’m totally dependant on that insulin in my pump. I’m on the 670G sys. by Medtronic, and it has the CGM in it, which has helped me in many ways. The CGM has turned my life around 180. I was on shots and it was getting overwhelming - running out of places to give the shot, being limited in what you ate, giving multiple shots daily, etc. - it was getting overwhelming.

Don’t worry about other people not getting it - that you have to maintain your blood glucose level - keep it simple - just tell them that you have an incurable disease and IT has to be taken care of before IT takes care of me! I have to keep my A1C at a certain level, but that’s another story!

Don’t feel like you’re alone there, because I grew up without anyone else having diabetes also, but I also knew that there are other people out there that have diabetes also and probably feeling the same way or a similiar way. I just didn’t know them! That’s why a site like this works. Keep your chin up, it’ll work out. Just give it some time.

I have been living with T1D for 48 years. I have had many ups and downs during that time. I don’t know if anyone that doesn’t have this disease can truly understand.

I am so thankful for the many advances in treatment during those years, including insulins , cgm, etc. I am also fortunate to be treated at Joslin Clinic in Boston.
I am blessed to have had the absolute support of my husband for 43 of those years.

I hope that you have a good support system. You aren’t alone.

Several have said it but here it goes…you are absolutely not alone! I Have been living with diabetes for twenty years and I still feel amazed at the behavior of some of the people close to me in my day to day life. If I had a dollar for every time I heard “ you shouldn’t eat that should you” or those infamous sentences from the non diabetic folks with the absence of a medical degree that always seems to start a sentence with “ you know with diabetes you…”
That sentence could go a hundred different ways. Some days I feel like I’ve got this and I have it All under control and as I munch on my favorite flavor of glucose tablet as I type this other days I just don’t have it together. It’s nice to be able to chat with others that have similar struggles and although I wouldn’t wish diabetes on anyone it’s nice to not be in the fight solo. Keep up the smiles and take care!

Of course you can use it, I think we should all get T-shirts that say that!

:grinning: I don’t mind!

Here’s one for you: When I was in my early 30’s, and had been a diabetic for over 20 years, I was out to dinner with my family and my own mother looked at me as I pulled out my insulin and said, “You’re not going to do that here at the table are you?!” I looked her in the eye and said, “Why not? It’s not something I need to hide is it?” She stated she would go into the bathroom. I told her I was not embarrassed by my diabetes and felt no need to hide it. She asked, “What if someone says something?” I answered, “Then I’ll explain to them what I’m doing and why.”

I’ve always been this way about my diabetes. Maybe it’s because I was diagnosed so young (age 2 1/2). On several occasions I’ve been asked what I’m doing. I have no problem explaining it to people who ask. Those who don’t ask but stare, I simply smile at them and then ignore the stares.

By-the-way, Mom was diagnosed LADA several years after the dinner out. She takes her shot at the dinner table now too! :wink:

Pam K
T1D 54 1/2 years and counting!

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Your not alone were warriors and in this together !

That story is food for thought. That was very empowering to read. As a grandma of my newly diagnosed grandson I appreciate listening to the many ways that I can offer support and be supportive. Thank you Pam.

@Emet Wow this brought some tears to my eyes due to how much it relates to me and I am only 24 T1 check with a meter and inject my pen shots . I have been there and still going through it and you and just like me and all of us here are not alone. This painful annoying!! Thing we have known as type one diabetes does not define our life or US. I have learned to no matter what including at work situations think about other people even when I know their staring. Even in public or in a restraunt I check my sugar now. Finding this forum has brought out so much motivation from me. I hope it does the same for you!

You’re welcome! I hope your grandson is doing well.

Pam

I personally have never been bothered by letting people around me know that I’m diabetic. In fact, I actually prefer to let a lot of people around me know about my medical condition, especially the people who I spend a lot of time around like my coworkers and friends. I guess in my mind it’s a matter of safety; if I fall out one day, the more people who know that I’m diabetic, the faster I can get the help I need.

But even more than that, I feel like it helps the people around me to gain at least a little bit more understanding of why it’s important that I stop and take my lunch break now and why I need to stop and check my bloodsugar if they see how much effort and discipline I put into taking care of myself. I let people know that diabetes – though not my whole life – is very much a part of my life. Some people are genuinely curious and once they see that I’m not shy or offended by questions, they’ll ask me more about it. I’ve even shown my pump and glucometer to my young cousin and my neighbor’s 7 and 8 year-old kids. They were fascinated! Now, whenever I visit any of them, after a meal, the kids will remind me that I need to “take my medicine” and will ask my to show them how I do it. I love to teach! And love that I can teach the kids a little bit about people with special medical needs so that they’ll have some familiarity with it if they ever meet a classmate one day who is diabetic.

True, I get more sympathy than empathy. After all, you can never really get how it is to live with this unless you or someone very close to you has it. But I will say that my coworkers who have known me the longest will occasionally notice that I’ve been moving too fast for too long and I seem to be getting addled, and they’ll say to me (kindly, but seriously), “Maddy – I think you should check your bloodsugar.” And you know what? More often than not, they were right!! :rofl: Even if they can’t fully understand what it’s like, I still feel really lucky to have amazing people in my life who’ll help look out for me.