The lack of diabetes education is a huge pet peeve of mine. The lack of education is not just a problem with those dealing with diabetes, but also with those medical providers that are supposed to be helping us. I frequently see people coming to message boards with some very outdated information. People are still using a sliding scale instead of learning how to carb count – to be clear here, I am not talking about a newly diagnosed person that you need to start off someplace until they can get some training, I am talking about people who have been diagnosed for some time. Doctors tell people not to do corrections in between meals. What purpose does that serve?
I have a real-life friend that has a teenage son with diabetes. I recently had a conversation with her about some of her frustrations with her doctor’s office. I know in the past that some of the stuff that she has been told is just flat out wrong. Like most teenagers, her son’s blood sugar fluctuates. Instead of offering tips to deal with that or even a little bit of understanding, she said they are both made to feel like crap during their appointment. Her son is treated like a liar and must be doing things that he should not be doing. I know that treatment all too well in dealing with gastroparesis. Doctor’s seem to think if you don’t have perfect numbers, it must be your fault.
My wish for doctors, nurses, CDEs and dieticians that deal with people with diabetes is that they have to test their blood sugar, write down everything they put in their mouth and inject saline when they want to eat so they know what we have to do on a daily basis. They would have a little camera attached to them 24/7 so we know if they “cheated” or not. They would also be using a specially rigged meter that would show their blood sugar to be high regardless of what they did. That would be an annual requirement so they get reminded of what it is like. They should be required to take several classes every year. One would be to keep up with new information. The other one would be taught by a PWD and they would have to hear the frustrations that we have with medical personnel.
In an ideal world, we would all get the education that we need. Since we don’t live in an ideal world, we need to help each other. The DOC has been a lifesaver for me. Prior to finding the DOC, my blood sugar was literally bouncing around between 30 and 300 every day. Doctors had no clue how to help someone with gastroparesis. Instead of getting help, I was treated like it was my fault. One time when a doctor was criticizing me because my blood sugar was all over the place, I even said, “tell me what to do and I will do it.” Instead of being offered suggestions of what I should do, I was met with blank stares. When I found the DOC, I also found the suggestions that helped manage my gastroparesis.
Spread the word about the DOC. If you meet someone in your neighborhood, at church, at work or even the grocery store, ask them if they are familiar with sites like TuDiabetes or Diabetes Daily. Let them know that you found some good tips just by talking to other people with diabetes. I find that when I pull my meter out to test, I have people tell me that they are also diabetic. Using that meter is a good way to attract the attention of another diabetic.
Let people know about books like Using Insulin by John Walsh or Think Like a Pancreas by Gary Scheiner. Offer to lend someone in need your copy. Buy an extra copy and donate it to your library. Let the library know what good books they are so they know if someone comes in looking for a helpful book on diabetes, they will be pointed towards those books.
Gary Scheiner offers some courses for insulin users at Type 1 University. Diabetes Daily also has the Diabetes Daily University. Both the courses from Gary Scheiner and Diabetes Daily are online courses so you can do those from your home. There may be others out there, but those are the ones that I am familiar with.
There are a bunch of diabetes groups on Facebook. Get involved in those groups. You don’t need to be an expert on diabetes to help people. Giving tips on the things that you do is a huge help to people looking for answers. There are people out there that really don’t know some of the little things that they could be doing. Those little tips that you can give will be a big help for people.
Kim Vlasnik of Texting My Pancreas started the You Can Do This Project. Kim made up both a flyer and a business card flyer that people can print off and hand out so people are aware about the You Can Do This Project.
Besides handing out the You Can Do This Project flyer, you can make up your own little wallet sized flyer with links to TuDiabetes and Diabetes Daily, along with the names of books like Using Insulin and Think Like Pancreas. When you bump into a person in need, all you would have to do is reach in your wallet and you have a nice little list of resources that you could hand out. If your doctor’s office has a bulletin board, ask if you can put some information on their bulletin board.
Keep spreading the word, every chance that you have. Pay it forward!
“This post is my August entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2011/august-dsma-blog-carnival/"
I freekin LOVE YOU Kelly, and that’s all I can say…!
Thank you, Kelly!
I thought I had the misfortune to receive poor diabetes education, only to find out that my experience was the norm not the exception. Been on the war path ever since. The best thing that happened in my diabetic life was finding Tu. Indeed, we have to pay it forward.
Thanks Gerri! It is sad to sad that bad diabetes education seems more the norm than anything else. I think the people that are well educated found that education online & not from a doctor’s office. I am very grateful for TuD being here!
The old-school approach of “scare the diabetic into having good blood sugars” still lives today but does seem to be less common. It seems to be most common among the docs who have refused to let me adjust insulin doses on my own.
I ran across a couple docs in my youth and early adulthood who thought that diabetes education consisted entirely of showing pictures of gangrenous and amputated limbs. Not sure whether that gets a smiley face or frowney face.
Thank god I also had some good education! The local hospital had a little workbook that actually dealt with adjusting insulin doses in response to urine tests; I’m not sure any of the docs or staff there understood it but that workbook was incredibly important to me in my youth, even after having moved on to home bg testing, because it was one of the few printed materials I saw in that era, that ever admitted that a diabetic is responsible for adjusting insulin doses on their own.
This unfortunate story about my endo really kinda warms my heart (but don't tell him that):
My endo was recently diagnosed with type 2. He told me a few years ago that because it runs in his family he had to take annual glucose tolerance tests (drink a bunch of sugary water and see how much his blood sugar changes), and for the first time the test actually caused him a blood sugar spike, followed by a crash. He looked at me and said "Wow. I finally understand why nighttime lows so frequently lead to morning highs. I would have eaten anything!" He described to me the same thing I feel when I awake at 3am with a blood sugar of 35: panic, shaking, cold sweat, and a desperate need to eat EVERYTHING I can get my hands on". He was at work when it happened. He had to keep working. He had to suffer through it and fix it and continue on with his day, all at the same time. Welcome, to my life, doc : )
Lest I sound cruel or cynical.... I adore my endo, and his recent diagnosis has inspired him to exercise more and eat less. He's doing great, and I'm really really glad.
Tim, I got lucky with my original doctor and he also understood the need to adjust insulin. That was back in the old NPH & Regular days using the exchange diet, but he still had me adjusting stuff. He recognized that I sat at a desk during the week and was moving constantly on the weekends and I would need different amounts of insulin. I don’t imagine that you stuck around very long with the doctors that told you that you couldn’t!
I think you are right that they don’t pull the scare tactics as much as they used to, but people are still walking out the door without some basic education.
Emily, it is sad that you have to tell a doctor, “welcome to my life,” but at least now, he does understand some of what you have to go thru. Diabetes doesn’t exactly happen the way the little rules think it should happen.
I have a similar story. My PCP’s 12 year old son was recently diagnosed T1.He’s the doc who handles my diabetes care. Interesting to have him ask me questions about insulin. We begin each appointment with me asking about his son.
For Type 2
I would also suggest in your book listing some books about the emotional change. As a type 2 diabetic, I didn’t any help from my doctor concerning this as well as little help on how to manage. I had to learn everything on my own. It hard trying accept a change in lifestyle and actually doing it. Some encouragement will have to come from other sources besides family.
If Life is a Game, these are the Rules by cherie carter scott, Ph.d
the four agreements by don miguel ruiz
Teaches you how to accept the past and also accept the present.
Blood Sugar 101 by Jenny Ruhl
The first year Type 2 Diabetes by Grechen Becker.
These books should help a Type 2 diabetic learn about diabetes and about them selves.
Great ideas Christalyn! Unfortunately, I think most of us have to learn everything on our own regardless of what type we are. We need to make sure that changes in the future and people don’t feel as lost as we did.
I hope you keep blogging about this issue because it is huge! I wish there was some way that you could reach out to the mainstream media because everyone needs to understand this disease. The low carb diet which works for so many, even those without diabetes, is expensive. It’s so hard to read the posts from T1 teenagers who are forced by family to eat Kraft dinner on a daily basis or teenagers whose parents don’t attend to foot injuries. I even read a post by a parent whose family refused to let a child eat when she was low. I think that the majority of folk out there just don’t get it.
Even if the PWD is educated about the disease, they often run into problems with family who are misinformed. The guilt load is overwhelming! From the overpriced test strips, medications, pumps, insulin etc. to the food issues one certainly has to pick the battles at home.
While I am fine at home and with gatherings on my side of the family where there are many diabetics, I dread the meals with my in-laws. They are convinced of the whole “portion control” - “reverse diabetes” information and I have to listen to it time and again. Luckily for me, my husband usually steps up to the plate and I don’t need to respond. I can’t imagine what it would be like if I had to live with that kind of treatment day-in and day-out.
So keep up your great blogs Kelly. One day the information has to get beyond the DOC.
Thank you Peetie. As long as I am able, I will keep writing! You are right, it is very hard to read those posts. The food ones are bad enough, but the foot injuries are even harder. I wouldn’t do that to someone without diabetes let alone someone with them. I don’t think a lot of people realize how fast a tiny little infection can spread.
It is good your husband sticks up for you. People just don’t understand and they hear “my sister does and …” and we both know just because they know someone doesn’t mean that person is in good control. Fortunately, my immediate family gets it but when you start adding cousins in, they don’t. My one aunt was a T2 with a T1 son. Her other son & daughter gave her OJ one night when she was sick & her BS was high! They thought they were supposed to give diabetics OJ when they had a BS problem. I almost choked the day my cousin told me that.