One Chance to Speak Up: What Would You Say?


(Anonymous) #1

With diabetes, I've experienced a lot of suppressed comments on my own part. Usually, I'm pretty quick to tell my family/friends what I think, but when it comes to diabetes it's a whole lot different. I'm not in a rush to let others in on the diabetic part of my life; I'll answer questions or teach them something, but it feels pretty personal. But I've also found myself regretting when I don't speak up or say something when it comes up.
I've thought long and hard about this, the one thing I would honestly say about diabetes. But the only thing I can say right now is I honestly still don't know what that would be.
What do you guys think? If you could say one thing about diabetes, without being judged, what would it be? Maybe something you regret not saying.
A lot of people don't get that I can't do this 100% all the time. Diabetics need breaks, too, and even if it doesn't literally consist of no diabetes, I can't always be strong every day for the rest of my life. I wish I could tell people that.
Not sure if this makes sense to you all...??


(Coolwater) #2

That's a good question actually. It's a hard one, I think I agree with you about how we also need breaks you know, even though we can't really have them, it's quite tough to control our diabetes day in and day out, and I don't think many people realize that. :)


(anathia) #3

Alyssa,

I think you've answered your own question: diabetics need breaks, too.  Not that we can't stop taking insulin, but we need breaks from people treating us oddly, or breaks from people pretending our disease doesn't exist.  I don't necessarily try to hide the fact that I'm diabetic, but I am always so pleased when a friend asks me, "Okay, so you have a pump. What does that do?" Not so much because I want to talk about being diabetic, as somebody else wants to learn, and wants to understand the experience.  That is important.

 

But I don't know what I'd say, either, honestly.  Maybe something along the lines of, "Stop ignoring us."  (With all the TII research that goes, I often feel as if TI lags behind/is misunderstood.)


(Anonymous) #4

Yes! I've tried expressing that to my family before, giving them examples of how other types and even other diseases are treated before type 1 diabetes. In my opinion, just because we can live with the disease doesn't mean we should have to. Wouldn't it be nice if it all could be of the same importance to researches.


(kneazle_lady) #5

This is what I would say, "I am telling the truth about an illness that I have had for over two decades. You do not know my disease better than I do. You have no right to tell me what to eat. I didn't do anything to 'deserve' this."

Eh...if I say, "autoimmune," I get a blank look. If I say that I didn't get it by eating too much, and I don't need to live by some mysterious food bible, I get a smug and sanctimonious expression as a result. If I say that my blood sugar is low, I get asked if I need to do a shot. If I say my blood sugar is high, I get raised eyebrows. If I have an insulin reaction and ask for sugar, and am disoriented, I get accused of being either crazy or on drugs. If I say that I don't want to hear horror stories, I get more of them (because, well, it's just 'that' important to tell me all about it!).

I feel like the caveman in the Geico commercials: anyone out there know what I'm talking about? Except the line isn't about a caveman: the line is, "Diabetes is an easy disease which happens to fat, lazy people! Just pop a pill, go on a diet, and get off that sofa!!!"Here in South Carolina, there's a "public information" campaign going on because there's a "diabetes epidemic." The ads are very angering to me. Evidently, it's just too hard for these broadcasters to pronounce "Type 2." The road to hell is, indeed, paved with good intentions.

I wish that I would be believed. That's what I would wish. Then, maybe, I would speak. People seem to often be able to process only very limited pieces of information, and their brains won't take it in if it doesn't have something appealing about it, a 'nice-tasting' idea. I think the majority of people are intellectual gluttons whose sole preference is mental junk food. And these people want to talk to me about what I "eat."

I hope you don't mind that I vented on your post.Not everyone is awful. Truly, there are some beautiful people around here who have a heart and like to use their brains.

If you ever find out exactly what to say, please let me know. I've been trying to think of what I would say in a sound bite format...I regret sometimes not saying something. I have to walk away, or simply stop thinking.


(Jadeen) #6

I was out having lunch with a friend one day and I had to give myself an insulin shot. She just looked at me and said "Shouldn't you go in the bathroom or something to do that, you know, so people don't have to see you?"
Maybe I overreacted in my head, but it made me really mad. I can understand how it can be embarrassing for other people when they're out with me and I give myself a shot in public, but why should I hide who I am, what I have, for the sake of complete strangers? I just wanted to tell her that I have to go through this everyday, so what's wrong with people watching it for 45 seconds....I need my insulin and maybe I'm being inconsiderate, but I have to attend to my needs, my livelihood, more than I need to attend to the emotional needs of those around me. Now that I write it out, I'm really glad I didn't say it - it sounds kind of mean. haha

And I just want to tell the world that I'm sick of them pretending to understand what I'm going through and I'm sick of them telling me that it's not so bad. I was devastated when I was first diagnosed and people telling me that it "isn't that bad" would just make me want to burst out in tears. Sure, it's not as bad as it could be, but it's still pretty shitty (sorry for the language, but what else can really describe it?)...and life-altering, which made it even more difficult to hear "I understand how you're feeling." They're not in my body, my head, or my heart, so how could they know what I'm going through?!?!

It's noce to vent....sorry if it makes me sound like a biatch.


(figure skater girl) #7

If I could say one thing I would say"Why are you acting so strange around me? Its not like I have the power to decide if you get diabetes! Part of my body just doesnt work like yours!" I would say that(even though its mean) because a lot of people act strange around me. AND the people who act strange are th people that dont care or understand what diabetes is. Some people in my class are around me alot when I test my blood sugar, so they arent freaked out about it but they usually ask dumb questions(like does it hurt or why do you do that...)


(rach123) #8

If i could say one thing it would be "Diabetes is a serious thing people stop acting like its nothing, and like you know it all!" for me its the complete apposite for most people. Evryone has known me woth it since they met me so they don't care!  Exmple of what I'm talking about : one night at a friends house I go down to like 56 or something and I'm in the need food, can't move, headache, need food, falling down, need food stage and my friends just like are you ok? So I'm no i think i may die and she says oh ok. Then in the middle of the night i rebound and wake up in the morning with a blood sugar in the 400s and again shes just like are you ok when I'm about vomit on her and i tell her so, she says oh ok sorry and goes to get some breakfast and comes back up angry when i didnt join her, grrr, i felt like yelling yeah cause food and sloshing around is exactly what i need right now! If you thought that was bad i have more. Example 2: im at church i go high and wont go back down im missarble my legs hurt im about to vomit and im very emotional And my friends running all iver the place talking to people picking up little kids trying to impress her crush. Example 3: Its a friday school day i wake up and vomit so my mom calls my mamaw and she comes over and watches me until my blood sugar goes down. When i go to school i have an awful day i still feel like im going to vomit. People keeps asking me questions and once i told them they were just like o and left me alone, my friends are just ignoring me, and once again im emotional. I'm just sloshing through the day feeling like the im feeling like a worthless piece of corn that everyones going out of their way to step on. I make it back to class and we play a game for this group activity, we're standing in a line and this girl ( its the girl in every school wants to be friends with and she's really snobby and prissy ) and she keeps stepping on me and then she rams into my omnipod!!! and its a pretty big thing and it was kinda painful. Long story short i blew up. And when i left the room she said "poor Rachel" grrrrr.

Now i dont want anybody feeling sorry for me but its a big deal not something to throw over your shoulder like a piece of trash. And when i'm sick because of it i would like people to try and understand instead of ignoring me.       


(JamesChambers) #9

A manager was walking by us in Pizza Hut as I was giving Beemer a needle about a year ago.  He asked me with a disgusted kind of tone if I should go to the bathroom to do that, much the same as an above post.

I said, "no, I don't think so."  I gave him a shot and the manager huffed as he walked away.

What I wanted to say was, "no, you ignorant $@!#, this is part of his meal, just as much as your fork.  And if you ask me again or insult my child in public like that one more time I'll have a disability lawsuit all over this franchise in a heartbeat."

If nothing, God has taught me restraint and patience over the last few years.  ;o)

I'm glad I bit my tongue, but regret not being able to come up with something better than, "no."

In response to the stupid questions I now often say, "No, actually, he's just like you and me, except his little body stopped making insulin.  He needs a needle to keep him alive and healthy."


(BethBrown) #10

good for you.....even though we do want to say those things outloud!!!

When I was younger, my high school made me go to the nurses office everytime I needed to check blood sugar or take a shot. It made me nervouse being so far from my meter all the time (they made me keep it in there). Looking back I should have fought harder, but at the time I was the only diabetic in the whole distric and I had a hard time not feeling like an alien..... often because of my diabetes.


(figure skater girl) #11

people were realy strange around me when I got back from the hospital


(figure skater girl) #12

There was a time where igot to explain what diabetes was to my class. that was strange


(figure skater girl) #13

I got a really bad mark on a test because I had to answer questions during a movie and missed the first half of the questions because I had to check my blood sugar but I got better than most people because the teacher raised my markalot


(jayjay19936) #14

All i know is that my friends and family are always expecting me to be strong and put up with everything. What they dont know is that some nights i cry myself to sleep because of the pain from insets. I need breaks i cant always be strong when people want me to be. I really regret alot in my life but diabetes its really about telling people. i wish i hadnt. i wish i could go back and not tell people. i hate the look people give you when you first tell them. the "oh my god you poor thing" look. it irritates me to no end. so thats what i regret.


(bsum) #15

I would definitely bring up the whole we need a break thing.  I want to be strong, and all diabetics are strong for dealing with everything, but there's no such thing as a break for us and sometimes it's hard for people to understand that.  I would also express the difference between Type 1 and Type 2 because it annoys the heck outta me when people ask me things like "oh so you got diabetes from eating too much sugar?" or "oh its ok my gradma has it n she just has to take a pill"  stuff like that gets to me.


(Elizabeth Alston) #16

I have a daughter with type 1, we found out three years ago.  I'm a clinic worker in an elementary school.  I was caring for my first type 1 for one month.  I knew before the end of the school year that he would be coming the next school year.  All summer I did research so I could learn about  diabetes.  One month after school started my daughter was diagnosed.   The one thing that I would like to say is that teachers need to be more understanding and learn more about type 1.  They confuse type 1 with type 2.   I have 3 children with type 1 in my school.  One day one came one of the kids in the clinic with a B/S of 48.  He was out of class about 35 minutes.  His teacher made him pull his clip for being out of class to long.  The next day his sugar dropped again.   I wrote her a note explaining the progress I have to go through to make sure his B/S comes back up to a normal range, and DO NOT make him pull his clip again.  Last week a teacher came looking for another student.  He told her to go back to class.  I was quick to tell him that I could not let her out of my sight until her B/S came back to normal.  She was 67, and after a 15 carb snack she dropped to 47.  She is on the pump and had just had adjustments.   Any teacher with a type 1 student should be required to learn about type 1.  And when a child tells that they don't feel right not let them come to the clinic alone.  They just do not understand. 


(whatruhere4) #17

i have never really had too many problems with teachers or employer's about my diabetes. two years ago i was at a youth function that lasted for a week and i was a volunteer counselor. well i was giving a lesson and i started to feel really funny, immediately i knew my Blood Sugar was low. i stopped my lesson started to pull out my Diabetes stuff to check my levels. i don't remember exactly what happened but i think as soon as i saw the number i started to go over to another counselor who was just leaving the room, i collapsed into a chair and began to sob. the other counselor had no clue what to do, so one of the girls i was counselor over took another girl to get the medic. he came rushing in with juice and a PB & J. that was the scariest low i have ever had. i felt scared because i didn't know what to do with my girls i knew i needed glucose, but i didn't want to leave them to their own devices. what i wish i would have told that other counselor was that i can't just get up and go, i'm literally dying, but all you are doing is staring at me like a deer caught in the headlights. i'm so glad that my girls had enough sense to go get help, i don't think i ever thanked them. here and now i am thanking them for their ability to comfort me and help me with that. 


(Gina) #18

Leave me alone! I don't feel like talking about it, I want you to stop asking me what my blood sugar is and if I am ok. Yes, I can eat that.


(MaDEvans) #19

I like your's the best, Gina...

Yes, I can eat that.


(whatruhere4) #20

ohh and another one that works is no it's not the old people diabetes. (no offense to those who have type 2).