T1d loneliness


#1

Feeling the t1d loneliness these days.

Earlier this week, I had a whole conversation about the difference between t1d and t2d with a co-worker, and as soon as I finished explaining, the person answered " yeah but you really shouldn’t eat “xyz” it’s not good for your diabetes", Where I had just explained that there is no amount of healthy eating, exercise or supplement that will cure my diabetes.

Another one saw me with my diabetes bag opened at work and just ran the other way.
It’s not the first time she does that.

Last week, I was in the process of priming my pen and attempting to give myself insulin, and a co-worker wouldn’t give me a minute to do my things, and then a boss came by and they are both going at me like u should do this and that, ( work wise), not giving me a minute to breath or finish what I’m doing, then when I’m done ( and frustrated with their lack of awareness or privacy) the co worker says, " I never knew you were diabetic, you are really cool about this whole insulin and giving yourself shots…" I really wanted to snap back at her, but I just smiled. I realize their lack has nothing to do with my diabetes and all to do with their own being but still.

Today, a girl was explaining to me that she was supposed to do a research paper on diabetes but failed it cuz she just didn’t get it. Diabetes is too complicated.

Today, I was trying to avoid going low all day, and not running too high either. I feel completely wiped out. My friend felt it was all way over her head.

Tonight, My cgm was obvious ( on my lower arm, with short sleeves) and a lot of people made very weird comments about it.

I know in the Grand scheme of things, this all is nothing, but somehow this time it’s getting to me. I’m feeling it a lot.
Maybe it’s a mix of the holidays,
Maybe it’s that I put on 20 pounds in less than 2 months,
Maybe it’s my Endo not being appreciative of all the hard work I have done since my last visit because my a1c is still above 7
And maybe, it is that I’m starting to be more talkative about my journey and challenges lately, hence giving a chance for people to comment. I don’t know.
But tonight, I just can’t get it all out of my head and I’m feeling really alone out there


(Steven) #2

You are NOT alone.

Tonight, I can’t remember if I gave myself my Levemir. I was active all day and am not sure I corrected appropriately. And nobody gets it (but I bet YOU do!).

You are NOT alone.


(Bill) #3

Hi, Emet @Emet,

Nope, you’re definitely not alone! For many of us, the whole Christmas/Holiday season seems to “drive home” how differently we have to live. Holiday parties are in “full bloom” and, at work, people bring so many snack foods to share. In either situation people are standing about, eating. Us? Many of us politely excuse ourselves and go back to work, or have to stand about at a party with a sparkling water in our hand while other people get in our face and tell us, “Oh! You should try the fudge! It’s delicious!” It is amazing how “alone” you can feel when you are standing in a room full of people who are all eating, drinking, and carrying on like there “is nothing to worry about.” We really don’t have that luxury.

I find that commercials on television really “drive home” the idea that a “good time” is based on eating and drinking. And the people they show in those commercials seem to be so happy and “perfect.” It is tough to not feel “alone” or “left out” when you know you’ll never live up to the “standard” that those commercials would have you believe. The commercials would have you believe that “this is how ‘normal’ and ‘successful’ people live.” The implication in their message is, “if you don’t live like this you’re a failure.” Now that can make you feel very alone.

The normal “lack of empathy” we experience from others during the course of the year gets really “concentrated” by the food/drink emphasis of the Christmas/holiday season. Over the years my wife and I have generally withdrawn from Christmas/ the holiday season. We just go on with our lives like it is another month of the year. And we don’t watch the bloody television.

You’re not alone. And you’re “Okay.”

Bill


(Dennis J. Dacey, pwD) #4

You are not alone @Emet! Yeah it may feel like that at times - I’ve been in all the situations you describe - but now I’ve learned to let “comments” flow off me or to respond in a way that shuts down aggressive behavior.

About your CGM transmitter being visible. Recall all the pictures in newspapers and on television a few months ago when President Trump attended a State Dinner in London as guest of Prime Minister May; the PM wore a rather stunning scarlet, sleeveless dress and on her left arm, very visible to all, was her white Abbott Freestyle CGM. Yes, she is a member of our exclusive T1D club and doesn’t hesitate letting the world know.


(Fabio) #5

You are not alone because just like you many people are here in the same journey. T1d is complicated to people because most people are familiarized with type 2. However, You have to try and lightly educate the people you surrounded with because many of them might don’t understand. We can live life fully and look just as regular as the next person but inside we now we are in a battle. If you need to give yourself insulin, tell them or let them know you have to. They can give you a moment or some of them do not mind it. Many people now a day have family with diabetes and are becoming more aware of the things we need to do.


(joe) #6

@Emet yes I don’t try to teach people anymore. Exhausting. As far as work goes, I don’t share much at work either, just a preference for me these last few years.

It sounds like you are stuck in the “for the rest of my life” thing, where life becomes unmanageable when you look st it a certain way. I do this all the time and it can make me sad. When I reframe it to “just for today” things kind of come into perspective. This is a tough one. Hope you are feeling ok.


(Robin) #7

All this sharing helps this newcomer to your forum. I am so grateful to have your collective voices for support as I learn to be the best support possible for my T1D 4 year old grandson. Thank you!


(Dennis J. Dacey, pwD) #8

@Emet, I kind of skipped over the “Educate” part of your message.
I don’t hesitate to take the time to work with people who are truly interested in learning about diabetes and the differences in the half dozen conditions that share the common symptom “diabetes mellitus” - Greek meaning “the passing of sweet water”. I especially enjoy helping the medical professionals who missed “hearing” this information during training.

If I get the feeling that someone doesn’t want to learn - I really hate judging people, I just let the subject drop.


(Dennis J. Dacey, pwD) #9

Hi Robin @Grandma2014, welcome to the world of diabetes and Welcome to TypeOneNation.
I’m really happy that you found this resource to help you understand what your grandson is experiencing and how you can best support him and his parent. Here you will read many different experiences of people living with diabetes and you will see that not all of us visiting here manage our diabetes in the same way - yes, T1D management differs from person to person. I am not a medical doctor but I will offer my thoughts gathered from over 60 years living with diabetes, some of those years with very poor management, and from my participation [working with research doctors] in the development of management protocol.


(Crystal) #10

I can appreciate how you feel. My career in teaching was ruined in 2011 when I got my initial diagnosis. The following year I contracted a staph infection and was hospitalized a very long time. The next couple positions I secured the organizations and people were hostile to me. I am finally in a work position that is ok, and this is what defines me, as I’m 35 and not going to have kids. At times doctors appointments, work, traveling an hour to and from work is just too much. Having to navigate life with T1D is exhausting I understand!


(Robin) #11

Thank you Dennis for your warm welcome and your words of encouragement. This forum has been so helpful for us newbies;
my daughter, son in law and myself. Every single story is so helpful and teaches us something new. Thank you one and all for your insight and valuable sharing. Not even 2 months into my grandson’s diagnosis…learning and coping with a lifeline available is so comforting.


#12

That, in many ways is so true. I think it is part of what is hitting home. sadly not just the t1d, but I have been diagnosed in the last couple of months with 2 other auto-immune disorders plus fibro plus everything else going on in my life.

awareness of it and giving it a change of perspective might just be what I need. thank you!


#13

thank you for sharing.
Im sorry it has been so difficult for you.
I can relate to illness and difficulties at work.
hope things get better for you as well


(steve) #14

If your supervisor or co-workers are aware of your T1D and not accommodating, you can file a complaint with your HR department. You can’t be discriminated against or made to feel uncomfortable in treating a medical condition. You have every right to take time to administer insulin or break for eating. As long as the work gets done properly, there should be flexibility.

You can disclose as much or as little as you want about your diabetes, but if you are having struggles at work, try to find someone in management or HR to confide in professionally on what you need. Best to start with your immediate supervisor unless you feel that’s the problem. Whoever you speak with, don’t get emotional or get into a lot personal stuff. Keep it a business conversation and be clear in what you need.


(Becca) #15

I can totall yfeel everything about this. I hide my diabetes from coworkers, I dont take care of my diabetes like I’m suppose to. I have put in so much hard work that i went from 0% to 50% of work towards my diabetes but no one sees that. I gained about 30 pounds so quickly, people have asked me if I’m pregnant as a joke. I feel alone with everything. Feel free to personal message me and we can talk. I’ve been a diabetic for 11 years now and I’m 19 years old.


(Andy) #16

My sister-in-law recently came into our kitchen while I was preparing to give myself some insulin and came unglued.
“AAAAARGH…OMG…Can’t you do that in the bathroom!”
“I can but I’m not going to… Do you go to the bathroom to take your blood pressure pills?”
“It’s not the same thing!!! I make my Uncle David go to the bathroom to do that! (points at my insulin pen like it’s a turkey baster) He knows how much I hate needles”
“Again. Not my problem”
“(shudder) I have to leave. If you’re gonna do that here, I have to leave”

WIN/WIN


(Dennis J. Dacey, pwD) #17

Got you Andy @AJZimmerman , the last place to take insulin is in the bathroom. One of the reasons autoimmune diabetes was included in the Americans With Disabilities Act in 1990.
In days gone by, I had to make that citation when people in restaurants objected to me taking injections at the dinner table - got to the point one evening I suggested to a restaurant manager that he require wheelchair customers to consume meals in the restrooms; yes, he finally got the picture.


(Andy) #18

I actually watched her in action on Xmas day. Wheelchair- bound Uncle David was unceremoniously wheeled off to the bathroom to give himself a shot. (nevermind that 12 people had to get off their chairs so that the wheel chair could get by the dinner table)
This poor old guy lived thru the Korean War, raised six kids, and is helping put a few grandkids thru college. This is the thanks he gets? Being made to feel like a pariah around family.


(joe) #19

@AJZimmerman Andy, no one can make you feel like a pariah… unless you believe you are. I feel bad for your Uncle David, but people treat you the way you train them. You should try to get a 7 inch long needle to pull out for your dear sister in law … you know… if your brother won’t kill you.

People who matter don’t mind, and people who mind don’t matter.

Cheers good luck :four_leaf_clover:


(Dassy) #20

Andy, Thank you for the laugh!!! I myself have Vaso Vagal which me me faint at the site of needles. At 55 years old almost 6 months ago I was diagnosed with T1D and now I have to do that as well. Even when I’m in a restaurant now I say to people at my table, if needles bother you please don’t look but I am not doing this in the bathroom where it is unsanitary!