In the wake of many of the responses and messages I personally received in the last few days; a thought has come into light that we should explore. When it comes to diabetes, and not only what the media portrays, but in our everyday lives (and the lives of our kids), are we being bullied?
Bullying.
Be careful as the word has a huge black cloud over it. But that question remains and needs to be asked, if some of the things that have happened in our lives were switched ever so slightly; what would the world’s response be?
If kids were made fun of for their religious belief, what would be the reaction?
If movies portrayed other disease as they have diabetes, would there be an outcry?
If schools resisted managing children if they were terminally ill the way some fight what we ask for our kids, would the media stand idly by and not report it?
If media continually ‘got wrong’ the facts of one form of a disease vs. another with a similar name, would those suffering with the two disease say nothing?
If people were suffering with life threatening conditions, would the world stand by while it was stated and written that it was their own fault?
Really?
So why is it different for us……and that is the collective ALL OF US?
This is a very serious issue and really the only reaction has been talk with little (very little) action as a unified diabetes world. The differences, the stereo-types, the misinformation, and the nonsense; stops now.
We do not need to change the name of any form of diabetes, we need to stand up and be counted. We need to stand up and educate this world once and for all.
Here is something that each and every diabetes organization, company, foundation, group, and individually can stand behind. I call upon every diabetes entity to give/send/supply me one name, JUST ONE, of someone from your company, organization, group, hospital, center, foundation, and or yourself; who can discuss this issue and how best to educate the world on the differences in diabetes and what it means to live with it.
We also need one ad-agency-executive-type who will help us create the campaign pro-bono (we can speak to a company about paying for the printing). WE NEED THIS COMMITMENT. Gladly we will list the logos of every organization small and large that are part of this effort (or perhaps we will list none at all; to be discussed) and of course the ad-agency and any companies laying out money will be credited.
Time commitment will be a minimum (we all have much to do in our every day lives); perhaps two conference calls led by the ad agency, who will undertake this project; a course of action (radio, poster, TV) enlisting everyone who has an interest; and implementation to place posters, releases, and disperse information everywhere and anywhere.
I’m as tired of nothing getting done as the tactics being taken about and against people who live with diabetes, all forms, period. This is not about who will do it, this is about who will choose not to.
If you agree, We need you to play an active role and ask that you pass this along to everyone who needs to be involved and anyone who wants to get involved, have them reply here so everyone can watch it grow. Names of people who want to be involved can be emailed to me at karlya@optonline.net; place in the subject line Operation Diabetes Outreach. We should have all of this by February 15th. I will keep everyone posted.
I’m tired of it and so should you; and something needs to be done. I know so many care, but do you care enough to do something? The time to act is now. It’s put up or shut up time and if we choose to shut up and do nothing; than our voices should never be asked to rise again on this subject.
You in?
I am a diabetes dad.
Visit my Diabetes Dad FB Page and hit ‘like’.
36 replies on “I’m Done with the Mis-information and Bullying! Are You In?”
I know I don’t have to tell you this, but count me in – We are on it!
Thank you—we’ll see how this progresses. If people are REALLY interested in DOING….it will work; IMO.
🙂
I’m in!
Ok, email sent
I am so in!!! We do a “Know the Warning Signs” campaign here locally since it is crazy how many pediatricians don’t even know the signs. This is awesome to go much further.
LOVE—LOVELOVE—the campaign for the warning signs. Did I say I Love it!!!! Might be worth to include somewhere down the line (short term).
My 10 year old was diagnosed last March,so we are still new to a whole lot of this but one thing I do know is that there are many many wrong facts about diabetes being thrown around. For the first two months, we were so confused. I finally found you and other websites to help me with my madness. As I learned more, the madder I became at how often the word diabetes or pre-diabetes is thrown around. I thought it was just me being over-sensitive but I am so glad to see other people feel the same. The difference in Type-1 is so far from Type 2 that I wish they were named by a different name altogether.All cancers are different and treated as such, yet you say diabetes and people think one thing. When people look a my 70 pound 10 year old they still say “He doesn’t look diabetic, he is so skinny! or Did he eat alot of sugar as a child.” I truly want to just scream when someone is so out of the loop that they would make that statement but then I realize that they are only repeating what they have learned in the media. I am only a stay at home Mom but I would love to help if I can. I have three boys, ages 26,20 and 10. My 10 year old is the only one to have diabetes. Please count me in and I truly hope we can clear up some of the truly FALSE statements being thrown around as truths. Sorry for the rant but really needed to release it somehow!!! Thanks.
I’m totally done but I think the name has to be changed !!! I know awareness n education is key but when a person has no clue that group it with what they know which is diabetes is diabetes n it’s all the same! Now can they be explained the dif yes will they get it no y? Bc they just think it’s the diabetes that they always have heard of w some lil things that r diff! As we know it is not! This is my opinion n plight of course but I am def for any n all education ESP to some dr ! Thx for post
Annmarie—our focus will be education and although there is merit to the name change idea; it is too difficult a task because of the oppposition view point of the medical professionals who would have to agree to teh change and take on the responisbility to agree to a new name for that to happen. We can do something now; and we will focus on what we CAN DO now; for the short term.
I am all for a PSA type of ad that actually serves to help correct the mis-information and wrong-thinking out there. Seeing KIDS with Type 1 diabetes talking about the difficulties they deal with – including dealing with those who think they “gave themselves diabetes” – would be a huge help.
My daughter is still stunned that her great-aunt – a licensed pharmacist – commented that it was suprising how “slim” she was for having diabetes, and admonishing her that if she just didn’t eat sweets, she wouldn’t need insulin. When doctors and pharmacists don’t get it, how do you hope that the general public would understand without widespread education? I think that’s really the key.
done
I’m not so sure it’s bullying per se, but misunderstanding. There is such a lack of knowledge about diabetes, Type 1 and Type 2, which the media often does not take the time to differentiate between. Many people don’t understand our disease, because we can “live” with it. It’s not a “tug at the heart strings’ illness because there is often no visual cues that we have it. We look healthy, we participate in all of life’s activities. There’s insulin; so there’s a treatment, is the current thinking of those who don’t suffer from diabetes, who don’t take injections, and finger pricks, or wear a device 24/7. Who don’t have to worry about side effects; blindness, kidney failure, etc, who don’ t have to calculate the grams of carbs in every bite they take; or worry about how much exercise they can do. We need better EDUCATION!
I think a reassertion of the INSULIN IS NOT A CURE campaign would be helpful.
We NEED insulin to STAY ALIVE! I’ll say, it’s not a cure!
Totally agree with Catherine and Lisa.
Agreed and that component should surely be included; it is part of teh equation that needs education. Thanks for writing.
Maybe if we get enough scientists on board, we can have a name change. I know you’ve ruled it out as an impossibility, but petitions are becoming a productive way to get things done. Change.org, petitiononline.com, whitehouse.gov, etc are becoming a big deal. “Go big or go home”, right? What better way to educate the public than a larger-than-life petition to people like the white house or Dr Faustman or JDRF? Maybe even the CDC or FDA? That being said, maybe talking to the directors and office managers at as many medical facilities as possible about educating their providers about type-1 screening and diagnosis? And school nurses, of course. Just a thought. I wouldn’t even know where to begin doing all that, but seems to me it might be effective if taken on by the right individuals.
I just think that the name-confusion is putting a huge damper on education. People have been blinded by the two being shoved in the same box together.
You have my support and this is so so important.
Sadly lack of education is persvasive in those we expect to be educated.
I am a medic and no may of my colleagues don’t have a clue about diabetes and are really surprised when I tell them about the montioring, hypos, highs etc that my son has to put up with. They seem to think he is a freak case and every other person with diabetes is stable!!
I have to do an education session for junior doctors in my department in April and I am going to do it about diabetes. I am a psychiatrist so it will focus on diabetes and depression and the impact on living with a chronic illness etc.
I am happy to spread the message as far as I can in the NHS and all I come in contact with.
I do think a name change would be beneficial as the amount to times I have to read/ listen to the fact that my son has diabetes because he has eaten too much sugar drives me mad!!
I wish you would do that at Friends for Life this July too.
My son has 8 years this Friday of being a type 1 and the depression he has had since then is affecting everything in his life. I can’t get any answers from his endo or his psychiatrist (who is a lovely woman) about what we can do about it. He is on an SSRI already but his self esteem has been adversely affected. Part of it stems from diabullying early on by the close friends he had all his life. It is always worse with highs but he has stopped being careful about his food along with everything else. Any advice as a parent of a type one who just happens to be professionally competent ?
Rose- sorry to hear about your son. It sounds like he really needs help from a psychologist to address his depression and low self esteem. CBT (Cogitive Behavioural Therapy) could help to combat the negative thoughts he has about himself and teach him to challenge them with positive thoughts. Or he could have counselling from a psychologist to give him some time and space to let him work through his feeelings etc.
Why don’t you have a chat to one of the psychologists at FFL either Korey or Jill- they are both amazing for some advice. Also maybe your son could chat to Joe Solo who always has lots of advice and full of understanding.
I would love love love to come to FFL in Florida- one year maybe when my children are bigger!
You know it really is organ failure but I don’t think I have ever heard that term used. I wonder why not??
I home school my son because of issues like this from the school districts themselves! Count me in!
Not even sure were to begin. I guess my story has probable been someone elses nightmare once upon a time. My son was almost 16 and after a football injury to the head was found to have type 2 diabetes. We struggled to learn and deal with it through high school. He was very active and was only on pills to help control sugars . He did really well. went to college. during second semester he became sick went to the er and was sent home with a antibiotic. He started to with draw from school emotionaly. I trusted the hospital to tell us if something was wrong. Nothing was said. As time went by he did seem to be better. By 6 months later He went into severe DKA. He was kept at the same hospital for only 2 and a half days after having a sugar 0f 750. He seem to have a sinus infection and we were never taught about DKA or type 1 and things to watch for. This is were we learned he’s type 1 not 2. 4 days after being sent home he has been now dealing with Severe Neuropathy and issues with keeping foods down, if he doesnt eat small portions. He has been dealing with this for a year last September. I struggled to find help and with no insurence I’ve had to fight to keep his needs met on top of the fact he has to keep the heat up to 76/78 just to lesson his pain this time of year. I miss him having freedom to go out live a life and make a future. His life has been on hold because of this. We need the world to start getting up and edgucating to help people get it. I hope my son will get his life back hes only 23 and was married a month before DKA. If we had known the signs despite not being told we could of prevented this from happening. The Hospital neglected the signs he had the first time he was there. It didnt have to take this! No Insurence! No Problem! Big Lye.
Unfortunately, SO many people are wrongfully diagnosed with Type 2 diabetes when in fact they are Type 1. Have you looked into possible legal action against the doctor who misdiagnosed him?
Hi, we are struggling to get the help at this point and dissability. He has a lawyer but between what I already have on my plate and trying to help support them to keep them in there own place were he has help I onestly do not have a moment to take another legal battle on. I spoke to his lawyer about this whole thing and He said we could try to go after the hospital that diagnosed him. I get enough stress from people who dont see him and dont know the details just because hes so young. I’ve second guessed filing the dissability and when I’m with them down at there place I’m quickly reminded why I believe what i’m doing is rite. It the doctors see he needs it than who cares what other think all do respect. I cant go into details but this has made life very hard on him and his wife. As far as the gastro issues it took about 4 to 6 monthes for him to eat somewhat normal food again once we learned what was happening. I’m on here sharing to prevent another child from this happening. The medications make him tired all the time and he has to keep his A1C as low as possible not to have more problems. Diabetes is so much Fun> Not
Your son is not alone. My daughter at 13 was diagnosed T2 because she was insulin resistant and still did not loss weight to suit them. They even called us liers about her diet and activity level. I had to beg for testing. 1st time she was borderline. A month later she was in the 500s even after being at marching band practice for 6 hours, eating nothing and drinking water by the gallon. I was told to stop lying and quit feeding her. I switched back to the other Endo we left for saying we lied without testing because they at least dosed her with insulin. They agreed to retest her for antibodies she was positive for 3 of 4. I don’t get why they don’t test type 2 for antibodies to be sure they are not failing.
Oh by the way my daughter also has gastro issues and cannot eat a lot of what she could eat before. She now has allergies when she had none. She is sick most of the year.
Hi, i made a post ealier in ref to the gastro and issue my son has. Has your daughter ever gone through DKA? He was fine untill the DKA happened. I need to learn more just need a extra 24 hours in a day:)
Oh, as happy as I am to have new technology… It would make me just as happy to give Type 1 it’s own name. I am a nurse and in a community that is educated on medical processes… I can say it is not understood for sure. Can’t say I knew enough about it either. :). Regardless, diabetes (both types) are thrown in one pot. There is a big difference. I, a 230 lb, in-active person who had gestational diabetes, am likely on the road to type 2, and take no offense in stating that while I can not change my genes that put me at higher risk (in addition to my lifestyle choices) but I “could” choose to make better choice to avoid a road to living with insulin. And hence the stigma. For many (certainly not all) there are choices. This is a national directive that is front line of wellness programs. So people do know the basics… on how to avoid Type 2. I feel exhausted In educating people on Type 1. You likely know the feeling, people looking at you as if you are crazy. Because surely they know someone with Type 1 and they sure have no issues unlike my child that they call brittle or must have a severe case. And I say “no, this is simply Type 1”. I sure hope that my frustration does not get passed onto my child. I hope it wears with time. There are worse things but this is no walk in the park. The disease is consuming enough without the addition of stigma. Emotions are strong trying to pull your most precious gift (your child) out of that pool they had no choice to be in.
I would like to help out! Mother of 12 year old daughter with type 1 diabetes – diagnosed 2 years next month.
And I should clarify that gestational diabetes is another condition that is often thrown upon people at random. It is known however that having gestational diabetes may increase your risk of developing Type 2 later in life.
We’re in! Whatever u need. DRI has ally contact info.
I’m in, too.
The comments above move me to another point. Misdiagnoses of Type 2 diabetes when in fact they are type 1! The media likes to report how more and more adolescence are being diagnosed with type 2 because of lifestyle choices. I call BS. I think that all the hype about people being diagnosed with the “self induced” (gag) Type 2 diabetes by incompetent medical professionals is leading to these statistics, along with exaggeration for shock effect! Yet, another painful reality improper media cover has contributes to people living with diabetes. This problem is more serious that we realize and it snowballing into problems that is hurting the quality of lives in so many ways. This is in fact bullying. The media is ABSOLUTELY responsible for making sure that the information about medical issues they put out is accurate and they have gotten it almost 100% WRONG!!! I am fed up! They need to straighten up their act and they will not unless we all get together and do something.
Little late to the party, but consider me in (without a doubt).
Diabetes Dad-we are with you! My 9 year old son, and our family, started an awareness campaign in our area called “What’s Your Type?” We have booths at health fairs, speak at corporate functions, and set up awareness nights with local sports teams. More than blood tests, insulin injections, and all the medical care-daily care of diabetes—the HARDEST part was the pblic misunderstanding of this disease. What people SAY to us is sometimes unbelievable! The wrong information on TV, in print, ect. We write to news shows, talk show hosts, congress. We are with YOU! Let’s join together and STOP the bullying of Diabetics–all types!