The challenge of diabetes self management

By Nick1962 Latest Reply 2012-05-28 09:38:58 -0500
Started 2012-04-12 11:09:38 -0500

This morning I read an article in Medical News Today on managing diabetes. Basically, the article states it’s hard. WELL DUH! I said after reading it, it is hard! But the article did raise a significant point the second time I read it. It seems the health professionals that are there to help and guide us to manage our condition, really have very little knowledge inside our lives to know what prevents us from doing so.
The article is here or you can just read on. I caught myself laughing at the very last paragraph of the article. Maybe the researchers should take a look at Diabetic Connect!

The Challenges Of Self-Management Of Diabetes

A new study from researchers at Queen Mary, University of London reveals the many difficulties faced by people with diabetes in self-managing their disease.

People with diabetes have to invest a great deal of time and effort to manage their condition. This includes not only monitoring the level of sugar in their blood, organizing their medication and following a restrictive diet but also social challenges such as negotiating relatives' input and gaining access to doctors when they need to.

In Britain the primary strategy for helping patients is a short educational course on how to self-manage the condition. The new research suggests that this approach is unlikely to succeed in isolation because it ignores the many factors that are outside the patients' control such as food labeling in restaurants, local availability of healthy foods and the expectations and behavior of other people within family members, at school and at work.

Diabetes is an incurable disease which can have serious complications such as heart disease, kidney failure and blindness. It affects 2.6 million people in the UK and this figure is predicted to rise to four million by 2025.

Only around one per cent of a diabetic person's time is spent in the company of health professionals. The remaining 99 per cent of the time, the patient is managing their own diabetes.

The research was an 'ethnographic' study which looked in depth at a small group of 30 people with diabetes. Their ages ranged from 5 to 88 and they included different ethnic groups to reflect the fact that diabetes is particularly common in South Asians. Researchers shadowed the people for several periods of between two and five hours while they were going about their daily lives, noting how they managed their condition and the challenges they faced.

Trisha Greenhalgh, Professor of Primary Health Care at Queen Mary, University of London, led the study. She said: "Until now there has been very little research on what people with diabetes do, and how they cope when health professionals aren't around. We have shown that self-management of diabetes is hard work both practically and emotionally, and that many but not all people with diabetes are skillful at undertaking and coordinating all the different tasks involved."

The research showed that people with diabetes and their families devoted a lot of time and hard work to managing their disease. For those who were not managing well, the reasons tended to be that they were overstretched by family responsibilities, had other illnesses, were struggling financially or a combination of these. Many had other medical conditions, some very serious for example paralysis following a stroke, visual impairment or heart failure. These factors severely limited people's opportunities to manage their condition, meaning that those who would benefit most from self-management were also those least able to achieve it.

Lack of food labeling in cafes and restaurants also proved challenging because it made calculating the correct dose of insulin difficult.

Some but not all health professionals were enthusiastic about people acquiring advanced knowledge about their diabetes and learning how to self-manage.

Professor Greenhalgh added: "There is a trend towards encouraging individuals to look after their own health. This study highlights that whilst many people with diabetes are ready and able to do this, health professionals and wider society could be doing more to support them. Sadly there is still a great deal of ignorance, stigma and stereotyping.

"We need to know a lot more about how patients manage their disease outside of the clinic. In the meantime, doctors should be aware of the work their patients put in to self-management and understand that many factors will influence how successful they are at controlling their diabetes."

21 replies

MykenziePamala 2012-04-13 21:49:57 -0500 Report

There doesn't seem to be much thought in the words of our doctors. Do they understand the time a parent puts into a diabetic childs life, and if you have other children. I have found the easiest way to manage food is to measure, count and weigh our food and buy or check out every library book thats looks like it will help. We got copies of the school menu and the school has carb counts on a chart on wall in office for all diabetic students to use for reference. We have done everything possible to make our daughters day at school as stress free about food as possible. Next year she is all on her own in middle school, coping might not be so easy there. All we can do is hope she manages her carb counts correctly. We live with it every day, and we cope. We do, we live, we love and we count.

Nick1962 2012-04-14 17:58:23 -0500 Report

I think it's always tougher with a child, because parents almost have to manage by "remote control". My sympathies go out to you! Hopefully, by the time she gets to middle school, her habits will have been ingrained enough she'll no longer need to go through the weigh and count routine. She'll just know instinctively what her choices are. I snuck a peek at your profile and see you're about an hour west of my old hometown - welcome neighbor. To find someone out there that can even pronounce diabetes is a rarity, much less support it. Folks out there tend to lean toward "denyabetics" so the local health care figures if they don't take it seriously, why should they.

jigsaw 2012-04-13 13:48:15 -0500 Report

I have been to quite a few doctors since I was Diagnosed 18 years ago. For the most part, they would simply look at my medical history past and current and prescribe medications. Very few conventional medical practitioners practice preventive medicne. They simply diagnose, prescribe medications, and monitor you and the affect of the meds. None have offered much info on diet beyond a few simple generalities. Most doctors are not trained, so to speak, in nutrition and diet in general. I don't believe that they intend to do more then prescribe medications for the most part. They do what they are trained to do with few exceptions. Quite a few doctors that specialize in diabetes work with teams
of various categories of diabetes specialists. My endo works with diabetes educators, dieticians and nutritionists. They have free classes for their patients. I found that I certainly don't agree with all that the dietician recommends, but she has much valid and helpful info to add to my knowledge base. There are also free classes that take place around the country that are helpful.
For those without insurance, that would be a different category and discussion.

Unfortunately, when most of us are first diagnosed, we know little or nothing about managing diabetes. If we don't take the bull by the horns and make an effort to get educated, then we will continue to know the same (little to nothing). I did meet an alternative medical doctor who offered and advertised that he could reverse type II diabetes. He would show you everything from diet to exercise to supplements , etc. for $6000 (sale price) five years ago! No one is going to show us on an individualized basis how to manage our diabetes without an exorbitant fee! Also, insurance companies will not cover this type of care.
The combination of treatment and management of diabetes is much more intricate than many other types of conditions. It involves a lifestyle change by a conscious effort and choice. There is also a substantial amount of info available for those who seek it. That is how those of us that manage our diabetes successfully have learned. Maybe we are expecting to much from our doctors in some cases then they will ever offer.

There are exceptions of course, but I think what I am saying applies to many.

Nick1962 2012-04-14 18:27:26 -0500 Report

I agree Jigsaw, much of our personal management stems on first, our ability to afford it, and second our ability (and desire) to hunt it down and apply it. Each one of us is unique so our situations can be vastly different, however, there are many commonalities that exist that don't seem to be addressed, or addressed at a time when a patient isn't listening fully due to the shock of diagnosis. We see it here every week - so much so that many of us have cut-and-paste responses at the ready for new folks to the site. Questions like "what can I eat", or "why is my BG so high in the morning", or "is 6.8 considered a good A1c". These are all questions I don't think should need to be asked here. We are responsible for our own management ultimately, and as you say the info is there if we dig for it. Unfortunately, as you so aptly pointed out, there is a lot of garbage out there also and at a high price to boot! How about that "cure diabetes in 30 days" book at $80. Should we really have to dig for it I ask. No, not for the common basic information I say. Tell us in plain english what an EFFECTIVE diet is - limiting carbs is a great catchphrase, but for someone who eats nothing but, "limit" may mean cutting their bread servings DOWN to 3 per day. Tell me what A1c means - I had to look it up. Tell me how a "normal" person trends at meals - again, I had to look it up. Tell me when to test - there are folks out there who test in the morning and again at night (like I did for some time). What good is that?
This type of infor is most basic, and I don't think it'd be too costly to disseminate. You're right, individualized care is outside of what a doctor's responsibility is for most diabetics, but I think it should go beyond just looking at our daily BG test results (which mine didn't even ask to do).
I'm finding i guess I have some strong opinions on this, because this has gone way longer than I planned, but I seriously think that if we here were to write even a short 40 page book on coping and management, it would contain far more quality information than anything that's out there curently.

TsalagiLenape 2012-04-13 08:53:18 -0500 Report

I agree. And if the health professionals took a walk in our moccasins for a day or week, they'd stop and realize all we do. Thus it would empower then, enlighten and educate them to become more effective in their help with our diabetes. Hugs

TsalagiLenape 2012-04-14 08:47:38 -0500 Report

The main thing I see is that if the Doctors are willing to learn, show us by not charging us for our doctors visits but pay us for our knowledge. Or we can do a trade of some sort. To me I just wondered after looking at this if the Doctors are only saying what we want to hear aka quacking so we dont make others aware of their deficiencies? Or are they actually earnest and sincere? Just a thought

Nick1962 2012-04-14 18:57:28 -0500 Report

I know my main PCP is a busy guy. If I see him for more than 5 minutes per visit I'm lucky. He has asked me to speak with a group of diabetics he planned to form, so he sees a need, but because of patient confidentiality laws, he can't ask patients to contact me one-on-one (even though I gave him permission). Something about disclosing a diagnosis. This was over a year ago, so either he's not serious about it, or like you say, it's only his way of patting me on the back. But there's also the possibility that there just isn't interest.
No matter what, you're absolutely right. Maybe WE should write a small book of successes doctors could hand out. At least we'd make money for supplies off sales.

Nick1962 2012-04-13 12:06:41 -0500 Report

Exactly. Most of us are not asking for symapthy, or even help necessarily, but maybe a little empathy in recognizing that sometimes giving us at least some quality information and direction, we might be able to manage better and avoid a lot of the stress that comes with feeling so lost when first diagnosed.
Hugs to you and hopes for a good weekend!

Young1s 2012-04-12 15:47:22 -0500 Report

I agree, just a bunch of words stating the obvious. While it's up to each of us to learn how to manage and control our D, I think there should be more of a push to better educate more of our doctors. Not everyone has the opportunity to see an endo, so the only medical help they get is from a PCP or NP. In which case, they have very little knowledge and experience with dealing with D. That's why so many of our members are frustrated by the medical treatment they receive. No, we can't put our management (or lack thereof) all on the doctors shoulders, but given the fact that once diagnosed this is with us for life and the extent of related complications, they should at least have some understanding of what were going through and be open to consider alternative treatment. And you're right, this community would be an eye opener for many a doctor.

Nick1962 2012-04-12 16:11:12 -0500 Report

And I think that's what has me a little angry with the whole article. No, my doctor can't run my life for me, but what I've seen from the ADA seems to be antiquated information which isn't really applicable today. This is still what's being taught prospective dieticians and councelors.
I'll stand by a comment I made in another post. I really think many of our group here are really pioneers in the fight.

locarbarbie 2012-04-13 09:50:24 -0500 Report

I totally agree with your statement. I just don't understand how the ADA seems to be so closed minded when this is their total function.
And doctors…I could understand a lack of understanding and knowledge with some rare disease, but diabetes has become an epidemic and any doctor must have a large percentage of diabetic patients. I have actually had one of my doctors tell me "just don't overdo it". when my A1c was 6.2 and I was still working at lowering it! Another was dumbfounded that I still test daily when I have an A1c of 5.8, and actually told me that if it got any lower, "I would no longer have diabetes'!! I have been forced to take nutrition classes and the ADA sancioned nutritionist had never heard of chia seeds or ALA!
It has gotten to the point that I really only go to my appts for the routine labwork, not because I put any faith in my health team.

Nick1962 2012-04-13 11:59:33 -0500 Report

Pretty much the same here. I just see my PCP to get my bloods. I can’t be too hard on him though, he is busy, and this is one of those conditions that once you’ve been diagnosed, you pretty much have to learn how to play quietly on your own. Like you, I guess my main beef is that no one seems to be bothering to study the daily success stories, and potential for life changing treatments. It would be such a simple thing for the ADA to put out a survey asking people if they manage well. Of those who do, why not see what THEIR treatment is.

red flower lady
red flower lady 2012-04-12 14:31:26 -0500 Report

This is an interesting article. It isn't telling us diabetics anything new. I agree we need more help, and we need to help more. I know that there are those who say they are doing everything right, but are really being dishonest with themselves. It is easier to blame the diabetes then to make the necessary changes, who wants to feel like they have to give up control? It isn't giving up control, but rather taking control. This can be a freightening choice for some. But we need to take that control and then seek the extra help where we can get it. It would be wonderful if our drs knew what they were doing, as well as how else to help us. In the end it is our lives and we are responsible for it.

Nick1962 2012-04-12 16:06:19 -0500 Report

So true! I don’t know what made the article stand out to me more, the fact that many of the “educators” we as diabetics depend on, seem only to have a very limited or generic knowledge base they can draw from to help, or the fact that nobody even cared to make this study prior. To some degree I found myself very angry. Life for anyone with a medical issue is tough, but many assume that just because we are walking around and able to function, that we aren’t the least inconvenienced.
And you’re so right about control. Either you take it, or it takes you.

red flower lady
red flower lady 2012-04-13 02:25:40 -0500 Report

Only a fellow diabetic really understands what we go through on a daily basis, and you would think more offerings would be available. Yes, any medical issue has it's own needs, but when you throw diabetes on top of it things do get tough. I have quite a few health issues I deal with and would love for just one to go away. It is easy to get angry about it, but that will just add stress that we don't need.

DeanaG 2012-05-28 09:38:58 -0500 Report

I guess I was lucky in that when I attended my Diabetes Self Management classes the instructor was a nutritionist, CDE and also was a diabetic herself with diabetes in her family.
So she not only talked the talk, she was also walking the walk.
I learnt a lot from the classes and continue to learn from the great folks here at DC. ;-)

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