Lack of awareness irritating!
Ghomerzgirl
Posts: 67 Member
So I just had a major blow up on someone on a friends facebook page a little bit ago. A good friend of mine's 8yo son was just diagnosed with T1D. She spoke of it on facebook and a woman said 'I'm sorry to hear that, thankfully it wasn't something serious like cancer.' I COMPLETELY BLEW UP ON HER! So it's better that my friends son is diagnosed with a disease that IS life threatening and has NO CURE?! I mean I know cancer is serious, but there are cancers that have cures and go away with treatment. She said 'There is a cure for diabetes, it's called diet, exercise, and insulin' ARE YOU INCOMPETENT? I told her that insulin is NOT a cure, it is a treatment yes, but it is a treatment that has to be given every day for the rest of your life as a diabetic. There are serious complications that come with diabetes. Blindness, loss of limbs, and death to name a few. I am so sick of the lack of awareness for this disease. You hear all the commercials and talk shows talk about cancer, but for every 20 things I hear about cancer I hear something about diabetes, and mostly its for T2 or supplies. Don't get me wrong, I support trying to find a complete cure for all cancers, but I resent that people are not educated about finding a cure for diabetes or the causes of diabetes. Just the other day I was at the eye dr with my oldest son to fix his glasses. Since getting glasses he is in fear of becoming blind because of the issues that I have. One of the things he said to the lady was 'I don't want to go blind because if I get diabetes, it will be hard to take my shots'. The lady without skipping a beat said, 'Well don't eat a lot of sugar and you won't get it'. Very offensively I told her how completely untrue that was, that I have been diabetic for nearly 23 years and it wasn't sugar that caused my diabetes. I get so irritated and offended by the lack of awareness! Anyone else?
Jenn
Jenn
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Replies
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People are ignorant and they say the dumbest things.0
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Unfortunately, I feel like I am in that "ignorance phase." I was diagnosed with T1D less than a week ago after spending a few days in the hospital for diabetic ketoacidosis. My motto is that the situation could be a lot worse than it is.
Yes, I have to check my glucose 10+ times a day and stay home from school (senior in high school) until I know my patterns, but I could be in the hospital right now in a diabetic coma if I did not get myself checked out. Even then, if the ketoacidosis was not triggered, it could have gone undetected for a while, and I could have developed kidney damage and be on dialysis for the rest of my life.
It's a way for my to get over the grieving process, and I feel like thinking more "on the bright side" helped me heal and learn faster.0 -
Sorry to hear you joined the club! I'm newish as well - just diagnosed the end of January. There is a lot of misinformation out there, and a lot of low expectations from clinicians. The best thing you can do for yourself is educate yourself - read, go online and look at the diabetes discussion boards. look for the american diabetes associations message boards, also tudiabetes has a lot of info on their boards.
Get a copy of Think Like a Pancreas, Using Insulin, Your diabetes science experiment, and the diabetic athlete handbook. They are all good references and will teach you how to test and refine your basal and bolus dosing, your insulin:carb ratio, your correction factors and you duration of insulin. All important pieces to understand. Especially since they will change over time and you will need to reevaluate them periodically. The athlete handbook will help you figure your dosing for whatever sports you are involved in so you can continue them if you want.
Use the tools that are here on MFP - to get you carb/fiber/protein numbers for your meals so you can dose accurately. Using a food scale helps until you get good with portion sizes.
Ask lots of questions and if you're not getting the help you need to get you numbers under control keep pushing - for a CGM and eventually for a pump. Even for a new MD or CDE if needed. The more you know and do now the fewer problems down the road. And unfortunately this is the rest of our lives until they get a cure.
So far I have been lucky that I work in the medical profession and have supportive workmates. But they were clueless to what was involved and how different T1 is from T2. There was no family history on either side in my case so a T1 diagnosis at 60 was a bolt out of the blue. I have had to do a lot of pier education - I had to bring my primary md on board with what tests to order to prove the t1 dx since she had never had an adult dx before. I'm with a good endo group and tend to lead my care team rather than follow. But thats just me - I like tight control and have figured out how to get there with out going low. It takes a lot of work but it can be done.0 -
Very good advice! One thing to add is you will get frustrated with your numbers and the roller coasters until you figure your doses out and what you really need to watch for. Don't get discouraged to the point of falling into bad habits. i did that as a kid because my parents were uneducated too, and it has damaged me. I have kidney, vision, gastric, and nerve damage from the poor control as a kid. They have slightly improved since being approved by my insurance for a T:Slim pump. ALWAYS ASK QUESTIONS! If your dr wants to change something, ask them why, and get details about it. You have the most control over this disease embrace that control and take charge!
Jenn0 -
I've been a diabetic for 32 years now (and I'm 34), and I don't even remember life without it... I'm not sure sometimes if that's good since I can't really miss it or bad since it would be nice to have such a memory
But anyway - I can understand the attitude. Cancer is so much more immediately life-threatening, and only when you're through it are you in the same position, i.e. for many cancers it could come back anytime and kill you.
Also bear in mind lots of people just don't know what to say in such a situation and are desperately looking for something positive to say. I try never to be upset at something like that since it doesn't help anyone - instead, educate them, and be patient. Nobody will be swayed from a wrong or insensitive opinion by anger.
The only things that really annoys me is people sending me links for "miracle cures" and stuff that only works for type II, but again, I try and react nicely and tell them that this is not relevant for me rather than explode. Waste of my energy and time. And when people tell me it was "God's will" or a bad lifestyle (aged 2?) or something that happened to me to form my character. Still, and again, I'm way past getting annoyed about that sort of thing, and people say that kind of crap about cancer, depression, and so many other things, too.
I think we should all stick together rather than claiming one has it better than the other
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I understand your frustration most people think that you can just not eat (sweets or candy) then you will be fine or just take your insulin. They don't understand that is only a part of the Treatment not a cure and there can be lots of problems for the diabetes. My grandmother was a diabetic and she was blind and had also lost both legs because of diabetes. Now I am also diabetic It is always there know matter what you do or where you go, those idiot's just don't get that.0
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I was at work (retail) helping a woman with Parkinson's Disease. I helped her pick out clothes so she didn't have to walk around. She made the comment "it must be nice to be young and so healthy." I responded that not everyone young is healthy and I wa s diabetic." She proceed to PAT MY STOMACH and said if you lost like 30-50 pounds and you'll be fine." I think when I said "type 1" my boss interjected before I ripped her head off and explained I will never be better or get over it with diet. I understand people don't know every disease in the world. ...and not everyone can understand to the full extent. But willingness and ettique make me happy.0
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sooooooooooo frustrating. yes it's best to be positive and realize that we do have insulin when way back there was no treatment for T1 and patients simply slowly died. but it's still so hard and no one sees it. I always say it's an "invisible disease" - we don't look, sound or seem "sick" like others with a chronic illness, which sometimes ironically makes it harder for us to gain awareness and understanding. I often wish that type 1 and type 2 were named different diseases since they are SO very different. Until then (I've actually signed a petition/request that Type 1 be re-named!) we just have to keep educating the public one person at a time. Frustrating to say the least but the more people we take the time to correct the less ignorance there will be surrouding our disease.0
