To Tell or Not to Tell

General
1

I recently started a student organization that is dedicated to spreading advocacy, awareness, and doing fundraising for JDRF.  Just out of curiosity, how open are you in terms of sharing information about diabetes/management/your pump/shots..basically everything that affects you when it comes to diabetes?  

I ask this because a number of type 1 diabetics that I have approached (trust me, finding type 1 diabetics in a Big 10 school has been like finding a needle in a haystack) have been reluctant and/or embarrassed, private, and dissociative about having type 1 and their willingness to dedicate time to finding a cure.

I have even come across some type 1's on this website who have told me that they think they don't need to spread awareness of type 1 diabetes to the general public (who is, afterall, 94% of the rest of the people in the world and who may have huge misconceptions and generalizations about type 1).  

Are you comfortable talking about your diabetes with strangers/checking your blood sugar/doing shots in public?  Why or why not?

Hayley

 

2

Great topic, Hayley!

My short answer is "yes", but there are certain times and situations where I'm not comfortable sharing my diabetes with others. I blog about life with diabetes, and I've done blood tests, injections, and insulin pump cartridge changes in public before. I haven't always felt okay about doing those things, though, and I rarely use my last name online re: diabetes (though that has not been the case recently, so maybe I'm "out" now?). This was mostly because of my concern that future employers might discriminate against me when hiring.

It took me a long time to feel comfortable doing those things in public, and talking about diabetes to strangers. And really, I think that finding the DOC and the comfort and support you guys have provided me has helped to foster that ability. I always feel like I've got a group of people (you guys) behind me in whatever I'm doing with diabetes advocacy, and that's reassuring and motivating to me. You're a great bunch of people to know, even if our common trait is less than desirable. :)

3

ye and no.

 

when i was a teen, i didn't really talk about it to anyone but my close friends who had known me since elementary school (i was dx in grade 1). the rest of the students and the rest of my friends, usually didn't know until I tested or did a shot infront of them. why? because i just didn't care to go around telling everyone my life story. when i was in grade 7, a girl i knew got diagnosed and her/her family made it this HUGE deal. they would tell anyone and everyone whether or not the person was listening; a big pity party. i didn't want to be like that.

that being said, i've always tested, done shots etc etc in the public. unless i'm around small kids, i don't shy away. if someone cares to ask me about it, i'll tell them but i don't announce it.

if someone asks me out of the blue or starts talking about D and being incorrect, i'll talk but otherwise i just don't see the need to really. if they aren't curious, i'm not going to force it down their throats. we all have personal struggles, and this one is mine.

when it comes to other D's, except for online i rather talk about it. the people i know in person, unless we're gathering because of D...we talk about everything but or just a little about D. why? because we both live with it, why do we want to spend more time talking about it than we have to? unless something big happened or the likes, there's no need to spend our whole conversation going back and forth ranting about D.

i also shy away in general with D's (outside of friendship or a JDRF meeting) because i don't have the same "values" as a lot of Ds and I don't think of things in the same way. I've been criticized in the past and told i'm a "bad diabetic" all because I eat candy, i have slurpees, i didn't like the pump, i don't follow every news story about a cure or treatments, i don't believe in the "perfect" a1c because I know that an a1c can be decieving, i don't mind that my a1c is 8.5 or think that it's a problem since it works for me and it's steady, i don't believe in eliminating food only moderation(like ice cream, cupcakes, etc)...i HATE parents that refuse to let their kids eat a chocolate bar in moderation and try to be like other kids their age.

 

the other problem is that currently there is NO support groups for adults with T1. not only did i grow up not going to the camps or meeting any T1 kids my age, now that i'm an adult i can't go anywhere to meet other t1's. if you're a parent of a t1 child, there are groups..if you're a t2, there are groups..but nothing for us. it means i'm more likely to meet a parent (who disagrees with my views of letting a kid be a kid like i was raised) or t2's who go off about wanting to "die than ever take a needle" (to quote my dad's mother).

 

i talk and educate when i need to, otherwise i live my life like anyone else.

4

Batts,

I respect your opinions regarding the degree to which you open up about diabetes--however, I found a few points in your reasoning strange.  

"why? because i just didn't care to go around telling everyone my life story. when i was in grade 7, a girl i knew got diagnosed and her/her family made it this HUGE deal. they would tell anyone and everyone whether or not the person was listening; a big pity party. i didn't want to be like that." 

I feel as though you are making a substantial generalization about newly diagnosed diabetics.  Mind you, my parents didn't make "a HUGE deal," but my classmates (I was dx'd in 2nd grade) and teacher was very supportive (they even sent me a get well card when I was still in the hospital)--as were the rest of my family members.  I don't believe that educating my family members and friends (at that time of my life or today, as I encounter new professors, roommates, etc.) about diabetes is necessarily having a "pity party."  While I don't shove information down strangers' throats, I do think it's important (especially for newly diagnosed individuals) to avoid downplaying the disease.  

I have seen many depressing youtube videos entitled things like, "Jessica's Journey as a Type 1" in which parents just post pictures of how horrible the disease can be (which there's no denying), but I think educating people about the warning signs and complications is very important.  

 

Another thing you said that bothered me was that "the other problem is that currently there is NO support groups for adults with type 1." 

That statement is false.  Maybe where you live there aren't any local support groups, but there are some in Madison, WI.  I never went to any type 1 camps when I was younger, but I am lucky to be able to live in a city that supports type 1 diabetic ADULTS.  Obviously, my group is proof--we are all over the age of 18 and most of us share many of the same experiences and have the same goals regarding type 1 diabetes fundraising, etc.  Check out your local JDRF chapter..there are several in my state and the Western Wisconsin JDRF chapter has been awesome at supporting adult type 1's.  For example, they recently showcased a young woman with type 1 who is in college, my student organization, and a new Networking & Social Group for Madison's Type 1 Adults.  

5

Great post, Kim!

I never really thought about the employee discrimination before--I usually just tell whoever is interviewing me that I'm very independent with managing it, and that they don't really need to worry about it.

I think this site definitely has the power to allow individuals to become more comfortable with diabetes, since we feel more like a network of friends who have each others' backs.  :)  Definitely motivating!

Hayley

6

Hey Hayley. Yes, I'm very open about my D. I can't think of any times I'm not open about it, except for at job interviews where I'd never mention it. But, some people are motivated to get involved in advocacy than others. Others might have other causes they work for, or it's just not their personality. I thought I'd suggest that you'd find more people on your campus if you were more open to different ways of dealing with the disease.

Good luck finding more people! It's great how you're trying to get involved.

7

To be honest, NO MATTER THE FACT. We need to spread the facts of Diabetes. Wether it be Type 1 OR Type 2 (to me). Though it does anger me that literally NO ONE that lives where i do knows about Diabetes except older people who have type 2. And even then sometimes they can be clueless. I mean, I personally was completely clueless to what it was until it was drilled in my head for the almost week i was in the hospital. And even then it didn't click until around 3 weeks after getting out of the hospital.

I think we as Diabetics wether it be Type 1 or 2 NEED to spread awareness of it. I have explained to the best of my ability to EVERY person that asks about it. Wether it be Friends, Family, or even Co-workers. Though it could be a sore subject for some people that have it. (as they feel not normal having it) But in the end they will get over it and explain it to people. 

Trust me i have injected myself in public and most people don't notice. My Friends think i am some character from Resident Evil, as i inject myself so i can eat. (guess the character injects himself with a somewhat medicine that helps control the zombie infection he has) But i've been checking myself in public, injecting myself and everything for almost a year now. It's what i have to do to survive and It really isn't that bad. Though it can get annoying but hey it's a life style change. And i needed it and would love to educate those who actually want to learn what it is.

Hope this helps.

-Jared

8

I'm not sure I believe it's any more important to raise awareness about diabetes than any other illness.  Sure, we want to collect lots of money for research that could help lead to a cure, but I think we will all acknowledge that we know a lot and care a lot because we have the disease, and we didn't know much before we did.  But I'm completely clueless about AIDS.  And cancer.  And I see quite a bit of "lack of awareness" on this site about Type 2 diabetes.  It seems we don't want to be associated with T2 because that's an illness that "can be controlled" with diet and exercise.  So the people that have it must lack control, or be lazy or just eat too much sugar!  But did you know that Type 2 diabetes is more genetically linked than T1?  And so is the propensity to be "heavy".  I'll admit I don't like being associated with T2 diabetes for these reasons.  Like I want people to know that I don't have a choice.  But do T2 diabetics have a choice either, or am I just not fully awar1e of the disease? 

Boy, am I rambling!  I really shouldn't drink wine while I read these posts! :)

Oh, and to answer your question Hayley, I'll check my sugars or talk with anyone if they seem interested.  Doesn't bother me at all. 

 Although the points made about "potential employers" is a valid one.  And don't think they're worried about you being able to care for yourself.  They're worried about the cost of insuring you.  My mom once overheard a hospital administrator (she worked at the hospital) say she prefered one job candidate over another because the first candidat had a diabetic son.  The hospital administrator was a nun.  Nice.

9

I'm kindof in the minority on here on this one.  I don't tell anyone unless they have a valid reason to know.  It's divulged on a "need to know basis" only.  And not many people need to know either.  I don't think I need to spread awareness either.  If someone gets it, they'll learn about it like we did.  If they don't, then why do they really need to know?  Like someone else said, there are a lot of diseases that we have misconceptions about or know nothing about.  Be honest, how many people think schizophrenia is about multiple personalities?  I think if you think everyone else should be aware and know about diabetes and you don't go out of your way to learn about other people's diseases, you're a hypocrite.

I'm also discreet about testing and dosing.  I see it as no one else's business but mine.  I do it in public places when I have to, but most times I don't have to.

I want people to treat me like everyone else.  There are too many misconceptions and ignorance about all of this which I can't control.  So in order to no be discriminated against or treated differently, I act like everyone else in public. I do what I need to, but I don't do it in public if I can help it.   I would NEVER divulge this in a job interview either. If an employer asks you about it I believe they are breaking the law.

10

I am very open about it.  I test my glucose level and give myself shots in public (I am discreet about it) and I don't care because it is part of my life.  Most people don't even notice and if they do and ask questions I am happy to answer.  The word needs to get out there to educate others but most importantly to educate those that have the disease that maybe don't have the support or education they should.  I have seen others comments and yes I agree we don't need to be shoving info down everyone's throats, but if they want to learn it is great if it is available.  I doubt there are many people you can ask these days that don't know someone or have someone in their family with diabetes (of course majority is obviously type 2).

11

Hi Hayley,

First of all, I think it's awesome that you're trying to reach out to other type 1's at your school!  Whenever I meet another type 1 diabetic, I get super excited.  I guess I just have a passion for learning about this disease and how it affects other people, which is one of the reasons I can't wait to become a CDE!

To answer your question, I'll whip my glucometer out anytime, anywhere! (Nothing against anyone who doesn't feel comfortable doing this.  Everyone's different.)  I just feel that the more I test, the more I can adjust my insulin for my blood sugar, and the better control I'm in.  I'm not going to let my own self consciousness negatively impact my health, so I test and use my pump without shame, lol.  I like it when people are curious and ask me what I'm doing, because it does give me a chance to answer their questions about the disease, and those conversations often end up giving me the opportunity to learn about and provide correct information in response to the myths that someone may believe about type 1. 

I've never regretted telling someone that I have type 1 diabetes.  It is a huge part of who I am, whether I like it or not.  I've lived with and managed it for 20 years.  I feel that that should be celebrated as an accomplishment, rather than seen as a defect or failure (as the word "diabetes" is now often viewed.)

Molly

12

[quote user="Hayley Schreiter"]

I feel as though you are making a substantial generalization about newly diagnosed diabetics.

Another thing you said that bothered me was that "the other problem is that currently there is NO support groups for adults with type 1." 

That statement is false.  Maybe where you live there aren't any local support groups,

[/quote]

I erased what I wrote because I was QUITE upset by what you're accusing me of.

Think about what you're saying to me, what you asked of us..our experience, our opinion about talking about D with other D's and non-D's.

I don't generalize new diabetics. The way I was raised, not to make myself think or seem different from anyone because I am not and to not ask pity for my struggle, vs what HER family did and still does years later. Those were my two examples of how to handle D growing up and molded me into who i am today when it comes to talking about D, I choose my path because I hated the path her family took. I in no way assume all new diabetics are like that and never accuse them of such. I know her family was crazy to start with, this was just something else they could use for pity. That's why I don't run around talking about it when I am not asked, I don't want people to give me pity and that's how I grew up looking at it. If you go around telling everyone, all the time, even if they didn't ask for you to tell them..they are just going to give you pity. I'm open about testing, doing shots etc in public..because I have to do these things to live so if someone else hates it..that's their problem. But I don't announce it, I don't go "oh i'm a diabetic so I need to take my shot now." i just do it. If people ask, I'll talk to them about it. if they don't, who cares. growing up, there was just me (dx at age 6) and her (dx at age 12). there weren't any other kids with T1 around us. until she came along, i was the only one any of my friends knew. there was no DOC, there wasn't 15 kids in one school with T1. there was just us.

As for support groups..you asked us for OUR experiences. I was talking about MY experience in MY town. I did not say anywhere in my post that there are zero support groups in the world for T1's. I was giving you my experience which is that there is no support groups in MY town which is why so many of us are discouraged as adults to seek each other out. After you hit your teen years, it's almost as if you're expected to know what you're doing all the time and you shouldn't need support in anyway outside your endo. We all keep to ourselves for the most part. Not all of us, but most yeah.

 

I gave you exactly what you were asking for and you spat it back at me to make me look like a horrible person. I don't appreciate that.

13

Batts,

The very first thing I said in my reply to you was "I respect your opinions regarding the degree to which you open up about diabetes." 

In no way did I mean to upset you.  I was just making sure you don't consider everyone who wants to speak up about their diagnosis as making too big of a deal about it--which you have explained.  I have run into diabetic families who are "crazy" as well, and I'm not saying we all should deal with it in the same way, because that's unrealistic.  Obviously, smaller towns will have a smaller population of type 1's, so I'm not accusing you of lying by any means, as you state here:

"Don't tell me what I'm saying is false, without actually READING what i said. I SAID in my town there is nothing. I wasn't talking about YOUR town or anywhere else."

I have no motive for accusing you of lying, and I want this site to be a place for friendly conversation, not defensive and anger-laden conversation.  

However, you didn't say anywhere in your post about "my town."  I assumed you meant in your province, since my hometown, frankly, does not have any type 1 adult groups either.  It sounds like you'd enjoy having a type 1 diabetic adult group, so I was just suggesting to try to find more diabetics through your local JDRF chapter, if you already haven't.  If you don't want to do that, that's totally up to you.  I only have good intentions for you and if you don't want to meet other type 1's that's your opinion.  If there aren't any type 1 adults in your province, I am sorry because it is really difficult having to be compared to little kids who are usually pitied, quite frankly.  Trust me, I've been there, too.

  Let me pull a few things from the message you posted earlier:

"Yeah, I'm *** PISSED off at the way you're accusing me of thinking all newly diagnosed are like the girl's family or that i'm lying about groups. I was talking about MY town and MY experience. that's what you asked for."

Again, I am not accusing you of lying about anything.  It was only unclear to me that you felt that way about that specific girl's family, and I never said you were lying about your local groups.  

As for the rest of the post,

"So much for asking for people's opinions. Apparently all you want to hear is "yes i talk to everyone, all the time, even if they don't want to listen. 

Good luck. If this is how you're treating the Diabetics you come across who DON'T feel like talking about it all the time, to everyone....it's no wonder they don't want to talk to you or group your little group."

 

I found this to be quite immature.  I obviously don't want to hear "yes I talk to everyone, all the time, even if they don't want to listen."  I think that's absolutely absurd and I certainly don't act like that.  That's the reason I started this post, so that I could see individual differences between people's comfort levels and opinions.  The last part of the sentence, "it's no wonder why they don't want to talk to you or group your little group," was offensive, and again, immature.  

My intention of my reply to your post was to try to give you suggestions about what you might be able to do if you really wanted to meet with other type 1 adults.  Not to make you "look like a horrible person."

Hayley

14

You're basically my twin, apart from the wanting to be a CDE, haha (I want to be a nurse!).  I think it's awesome how proud and confident you seem! 

I think you put it beautifully, "I feel that that should be celebrated as an accomplishment, rather than seen as a defect or failure." :) 

Hayley

15

I deleted my post for a reason. I would prefer if you replied to my new post or not at all. I said I deleted it because I got really upset. I obviously said things I shouldn't have because I was REALLY offended when I first read it..hence why I took a few breaths, came back, deleted it because I KNEW I had said some things I shouldn't have/didn't mean to and re-posted.

Good luck with your search to create a group for T1s. I hope it works for you, I really do.

I won't be replying to any of your posts again though (you can rejoice now if you want) so we don't accidentally offend each other and I don't accidentally act on that feeling by saying things I don't mean to and then have you ignore my attempt to take a step back and come back to the conversation in a non-offended-really-upset manner.

Everyone says things at times they regret. I did, and I took it back by re-posting and admitting I said things at a time that was heated for me but you decided to ignore that, which means the fight could continue on but since I don't want that, I'll back off completely from any of your posts to avoid it happening again.

16

BTW I don't mean to say you meant to offend me but that's how what you said made me feel. I sometimes say things and people get offended, we all do, so don't worry about it. I don't dislike you or anything which is why I don't want to fight. I tried to prevent that by deleting my post, but obviously that didn't work out as planned! haha.

17

truce?

18

Love you Batts! Keep sharing here. (:

19

[quote user="DDrumminMan"]

I'm kindof in the minority on here on this one.  I don't tell anyone unless they have a valid reason to know.  It's divulged on a "need to know basis" only.  And not many people need to know either.  I don't think I need to spread awareness either.  If someone gets it, they'll learn about it like we did.  If they don't, then why do they really need to know?  Like someone else said, there are a lot of diseases that we have misconceptions about or know nothing about.  Be honest, how many people think schizophrenia is about multiple personalities?  I think if you think everyone else should be aware and know about diabetes and you don't go out of your way to learn about other people's diseases, you're a hypocrite.

I'm also discreet about testing and dosing.  I see it as no one else's business but mine.  I do it in public places when I have to, but most times I don't have to.

I want people to treat me like everyone else.  There are too many misconceptions and ignorance about all of this which I can't control.  So in order to no be discriminated against or treated differently, I act like everyone else in public. I do what I need to, but I don't do it in public if I can help it.   I would NEVER divulge this in a job interview either. If an employer asks you about it I believe they are breaking the law.

[/quote]

You and I definitely think alike.  I couldn't have said it better!!

20

The Americans with Disabilites Act protects people with diabetes from being discriminated against by potential employers; however, I still wouldn't divulge that information in a job interview.

Usually, I am not shy about my diabetes. I check my blood sugar and inject in public. I have never had anyone ask me about it but I would more than happy to discuss it with someone if they ask. I have also never met another Type 1 diabetic so I think groups and awareness are a great thing!