I was diagnosed at age 12 and have had type 1 for 10 years now. I get so frustrated when other people don't understand how hard it is to control and the causes of the disease. So many people seem to think I did this to myself or I should be taking better care of myself. My immediate family is 100% supportive but outside of that it seems like people can be so ignorant.
One of my friends recently got her nursing license and is working in home health care. When I see her she tells me about the diabetics she sees with missing limbs and complications. I CANT STAND hearing about everything that could go wrong. I work really hard to stay in control but she just assumes this will be me when I get older and always makes comments about it. Needless to say this is extremely upsetting and frustrating. She also has that attitude that she knows all about the disease and is always sure to tell me about it.... like I don't already know!!
Does anyone else deal with this?? It would be nice to hear I'm not the only one struggling to make people understand and how you cope with others remarks about your situation.... How do you react to situations like this without getting upset??
RebeccaI CANT STAND hearing about everything that could go wrong.
I totally agree! I am in different shoes than you because I am only 16 and Im really struggling with diabetes right now but I hate hearing my older sister or my therapist or friends talking about people they know/know of who have lost limbs or their eye sight! They don't really know everything I/we know about our diabetes and diabetes care, and also it just really is NOT pleasant to hear! Its like trying to tell someone who is about to go on stage all the embarrassing things that could happen. Its not helpful and just makes things worse. And its just plain scary! And this "scare tactic" that people and doctors use a lot (with me too) does not really help a 16 year old girl trying to work things out, let alone any other diabetic! Get real people!! I really don't know how to react without getting upset, unless you just tell the person how unhelpful it is when they talk like this.
You're so right, it is definitely not helpful at all! I don't understand why people would think I would even want to hear about stuff like that. It is scary to think about and nobody ever wants to think of the worst things that can happen! I wish you lots of luck getting control and I understand how hard it can be. When I was in high school my numbers were all over the place because of sports and just not having the time or patience to deal with everything. Doctors shouldn't try to scare you they should be supportive and offer advice that might actually help you. And family and friends should be supportive too. And your right, I don't even know how to react sometimes. They just don't get it... Thanks for commenting, it's nice to know I'm not the only one dealing with this! Venting on here and hearing from others at least makes me feel less alone. =)
Or, how about the need that everybody seems to have to tell you what you can and cannot eat, I didn't realize that my diagnosis made everyone in the world a dietician! I definately understand, people don't understand that what they say can be so aggrevating, and not at all helpful! It is hard to keep it all in, and not snap at people, but I guess that holding in your feelings is one of the only ways to deal with it. I am so thankful for this place, so I can vent to somebody that understands!
I understand fully what all of the folks who have written here are saying. I have lived with this longer than probably all of you, and I still do cringe when someone sees me eat something sweet when my levels are low and they ask "are you supposed to have that?" I am not an angry person by nature, though, so I find that what makes me feel better about stuff like this is if I take it as an opportunity to educate someone. The reality is that we are the rarity among diabetics -- I read once that 90 percent of diabetics are type 2 (don't quote me on this, for the percentages may be changing and the article that gave this number was written a couple of years ago). Most people don't know the difference -- this is not their fault, just that they have never had someone tell them..
So I normally respond by asking, "Did you know that there are 2 very different diseases that are both called 'diabetes'? Then, I explain that my type is an autoimmune disease similar to lupus or rheumatoid arthritis, whereby my immune system is overactive and that at some point in my earlier years, it was stimulated (when I caught a virus) to attack and kill my pancreas' insulin-producing cells. And I explain that type 2 is insulin resistance, often caused by too many fat cells. (One question and 2 sentences later, and I am almost done with my educational lesson, so this doesn't take very long in a conversation). I go on to say that because my pancreas does not produce insulin, I take insulin by injections, matching the amount to the carb count in whatever I eat. Therefore, I can eat ANYTHING as long as I take appropriate insulin to convert the carbs to energy. If the person I am talking to looks confused, I then say that people who have type 2 diabetes have to be very careful what they eat because they can't take insulin injections to cover their carbs effectively -- they have to lower their carb count and take oral meds to help their bodies use the insulin they produce. I follow by summarizing: "Therefore, type 1 diabetics can eat anything as long as we know the carb count and take appropriate insulin, while type 2 must carefully watch to make sure they don't overdo the carb count in their foods. Two very different treatments."
After this, the person never bothers me again with the "you can't eat that" comment, either because I have educated them or perhaps because I have bored them to tears and they don't want to listen to me explain it again. Either way works. :o)
I am chuckling at the thought of scaring people away from making comments... but truthfully, people just don't know. Type 1 just doesn't get the media coverage and most people who KNOW diabetics in their families know only about type 2. I always make a very big deal over the fact that they are two totally different diseases that just happen to result in the same consequence: elevated glucose levels. I suppose I don't tend to get angry over ignorance -- that's not the person's fault. They just need to be taught. We can all do that easily enough in daily life. You can follow with a comment about how difficult it is to often have to explain this to people who don't know the difference between the two types and how they are treated. A really super polite response after the explanation would be something like this:
"I really appreciate the fact that you care enough about me to ask me about my diet. However, I know exactly what I need to do to balance my glucose levels with food, so don't worry about me. All type 1 diabetics absolutely MUST have some carbs in their bodies at all times for the insulin to work on so we don't drop too low and pass out completely." A gracious reply like this leaves the person feeling like we appreciate their friendship or caring, but politely lets them know that we know what we are doing and do it deliberately.
Hope this offers some of you a possible way to handle it. I have NEVER explained to a person and had them say, "Oh, I knew that." They always thank me and tell me that they didn't know the differences. They will then hopefully never both another type 1 person with a comment like this again. So by explaining, we are not only helping ourselves, but also other type 1 folks by spreading education around.
Yes, Rebecca, I can completely relate! (I'm sure all type I diabetics can to some degree...). It is a source of frustration for me. And, Susan, I understand what you're saying. I have tried that approach a few times. I have been diabetic for 20 years now though, and I have gotten tired of explaining things to people. I just don't understand why people think that it is their place to comment on someone else's medical decisions.
Hi Rebecca......great name by the way. I have had diabetes now for 22 years and I know how you feel. I would listen to Susan on this. People need to be educated. Whenever I tell someone I am diabetic they always look so surprised and say that I don't look like I am diabetic......which seems so stupid to me that they would say that but I have to remember they don't know anything about diabetes. A lot of people only think of type 2 and think all diabetics are unhealthy and overweight. I have to explain the differences and yes after 22 years I have explained it so many times I should probably just record it and make people listen so I don't have to go through it again. You have to remember unless someone is diabetic or has close friend or family with it they aren't going to know anything about it. There are diabetics that don't know everything they should so for someone without it to know anything would actually surprise me. I find most people I talk to are very interested and have a lot of questions which makes the conversation far more interesting for me too.
Sorry I can't relate to your nurse friend. I work for a hospice company and I have a really good friend who is an RN so I am surrounded by nurses and they don't make comments like that. That actually seems a little rude of her. Perhaps she is so used to seeing diabetics that did not take care of themselves and she is worried that will happen to you so she wants to remind you so you stay on track.
150% agree. But I have some dear friends who ask questions, but not one of them has ever asked if I can eat sugar or not.
I totally understand how you feel! I was diagnosed with T1 just over 14 years ago at age 9. I am actually in nursing school now (going to graduate in 2 months woohoo!) and I hear crap from my instructors and classmates all the time! There is even an older (~40 year old) gentleman in school with me who has T2 diabetes because of his poor diet and lifestyle (factual..I'm not being judgmental!) and every time I eat a piece of candy or something like that he would say to me, "ya sure you should be eatin that?" and annoying little comments like that! My instructors often comment when I would drink coffee or put anything in my mouth too.
One thing I find difficult about being an adult with T1 diabetes is that a lot of people assume I have T2 diabetes.
Overall, It's annoying, and I try to completely ignore they said anything at all (to prevent myself from telling them how I really feel haha).. Another way I cope is through this website! I love reading everyone's posts. It helps me realize I am not the only one who goes through this stuff or feels this way. I am the only diabetic in my family and none of my friends have diabetes. So this website is a helpful way to relate to people.
And I also agree with Rebecca regarding educating people! Even telling them how you feel or how you personally deal with your diabetes can give them a different outlook. I've tried this and doesn't work for everyone, but it makes me feel better.
people who do not know any better have a lot of nerve! this morning at my endo's getting ready for my checkup I had a lady ask me, 'is'nt type 1 diabetes the more dangerous kind? it is if you have to use insulin'. OMG!!!! I hate when that happens....
type 1 dx: 11/30/07
A1C December 2012: 6.0%
Mom, Granny, PWDT1D
This video has been around, but it always makes me feel better when I'm frustrated trying to explain about my diabetes to some yahoo.
T1 since 1977 Minimed pump since 2002
It's on YouTube, called My Life As A Pin Cushion: The Diabetes Police
Nurses . . . I'm entering the field right now, and just yesterday at my interview for the College of Nursing, at the end one of the interviewers goes, "well I would offer you candy, but I know you won't take any" I felt like explaining it to her, but I decided to hold my tongue, because she is going to decided weather or not the "heads of the department" look at my application, or not, so instead of giving her the impression I was a "bad" diabetic, when I just told her I want to be a diabetic educator I passed on the candy, urg. You would think that they would understand a little bit better, but they seem to be just like everyone else, it's hit and miss how much they really know. I used to just kind of let the comments about what can happen just fly by, like well that won't happen to me, i'm in really good control. I'm still in good control, but i'm older now (still only 20, but I've had D since I was 1 and people mentioned things when I was young too) and sometimes it bugs me. Like when my physiology professor described in detail what diabetes does that cause neuropathy, i just didn't want to know. she doesn't know I'm diabetic, and it was for the whole class, because some student asked why diabetics don't always "feel pain in their feet" grrr, but It's still scary. I just try to tell myself that I'm doing everything I can to stay in good control, and that's all I can do. With your friend, I might just tell her that you really would rather not hear about the sick diabetic patients, that you appreciate her concern, but you do everything you can to stay healthy, and don't need to be reminded about all the bad parts of this disease. Throw in some stuff about all the new technology, that her patients probably didn't have access to, and hope she shuts her mouth. If she continues to think she knows all, tell her what my endo told my parents when I was diagnosed "someday she'll know more about her diabetes, than any of us could ever tell you." Remember your the expert, whether or not she is a nurse.