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Diabetes Can be a Five Letter Word.

... and that five letter word is "guilt." 

At the ePatient conference last week, Sue Rago was talking about diabetes and the complications that can arise.  "But the complications of well-managed diabetes?  None." 

And despite the fact that I met and enjoyed hanging out with Sue, this statement cut right through me.  Well-managed diabetes produces no complications?  So diabetes-related complications are just the result of an inattentive "host," or "slacking off?"  It's not the fault of diabetes itself?

The direct relationship between diabetes and guilt has always made me feel ... well, guilty.  I'm not familiar with what it's like to live with any other disease than type 1 diabetes, so I do feel lucky that I have never experienced something like cancer, but since my scope is limited, I know this diabetes/guilt dance all too well.  And diabetes - as a disease state including both type 1, type 2, and gestational - always seems to come with some added bonus of "You did this to yourself."  It sounds harsh, but I hear it all the time.

It makes me feel so frustrated, this assumption that diabetes only does what we tell it do to.  "The pump does it all for you, right?  So diabetes is like, simple to manage?"  Or "Just follow the rules and you'll be fine, right?  Bad stuff only happens to people who are lazy and don't take care of themselves."  I've never, ever heard someone ask a person living with a different disease - "Oh, what did you do to make this happen?" - but I've heard someone ask me about my diabetic retinopathy and respond, "Well, you must not be controlling your diabetes very well."

I work damn hard to manage my diabetes, and before I took the reigns on my disease, my parents worked hard to manage it.  I take my insulin, I test my blood sugar, and I see the doctor as often (maybe more often) than I should.  Efforts are made to best manage my health, but the fact remains that I have a disease.  I don't classify myself as "sick" and I don't view my life as compromised, but the reality is that type 1 diabetes is an autoimmune disease that causes my pancreas to stop its production of insulin.  As a result of this, the blood sugar homeostasis of my body has been forever disrupted.  And while the medical advances of the last few decades have been tremendous, giving rise to things like improved meter accuracy, insulin pumps, faster-acting insulin, and continuous glucose monitoring devices, there still isn't a cure.  My pancreas remains busted, so I will never be in "perfect diabetes control."

Yet so many people think that a pump or a medication is the answer, robbing fault from diabetes for any complications that may arise and instead making complications the result of "something I did."  I will fight that assertion tooth and nail for the rest of my life, because I care too much about my health and work too hard to let the perception of complications be that of fault. 

Back in March, I found this piece of paper wedged into an old diary of mine from middle school:

Diabetes and guilt - nasty combination.

Even then, as a kid, I was taught to feel solely responsible for my diabetes, as though diabetes itself didn't play a role in any of the outcomes.  "If I want to live:" is how that piece of paper starts off.  What a heavy burden for a child with diabetes.  High blood sugars?  My fault.  Spilling protein into my urine?  My fault.  Any threat of complication?  My fault?  Diabetes wasn't the cause - I was, apparently.  (Granted, many times highs and lows were a result of being a rebellious teenager or eating a 'forbidden food,' but were it not for the diabetes in the first place, it wouldn't be an issue.)

I don't agree with this mentality, and I refuse to subscribe to it.  Type 1 diabetes requires daily maintenance and diligence, but even if I follow "all the rules," there can still be complications.  My genetic make-up plays a role.  My family history plays a role.  And of course, my actions play a role.  This isn't a diatribe to give me a free pass to slack off and not care about my health. I need to take care of myself and work hard for my health.  I have always tried to remember my role in this relationship with diabetes, but I can't fool myself into thinking that if I just work hard enough, my body won't ever exhibit diabetes complications.  If my eyes start to bleed, it's not because I didn't care enough.  Things happen, and I need to be able to roll with whatever life dishes out.  I live with diabetes every day - I don't need the guilt.

Because at the end of the day, diabetes complications are the result of diabetes.

Comments

Amen

Kerri, this was a very good post. Everything you said is right on and the sad part is that only people who have this disease can see that sometimes! There are so many things a diabetic cannot control no matter how "good" they are.

Kerri,
You did great on this post! I remember coming out of some our first diabetic appointments completely frustrated and I asked my husband how he got through those appointments. "You never seem to have a good appointment. It's like 'you did good here, but....' in almost every aspect of your management. How do you do it?" I was just completely frustrated with the doctors, nurses and educators. It was, "you A1C is a little high, but it's lower that in it was. But you could be checking more. Your labs were fine, but you're 3 months overdue on your eye appointment. (Insert diabetic retinopathy lecture). There's no moment of remission for a diabetic. Ever. Or even for a minute. Or one appointment. And you're right, it's always "they didn't take care of themselves" when complications come up. (I worked on the other end and used to have that attitude too. Until I really started working with the patient advocacy side of things). Thanks for bringing that to our attention. Hopefully in time we'll be able to get the two sides (medical and patient) working together as more of a team. I appreciate all your efforts to do so.

AMEN! Another one of those posts that I'll forward to family and close friends to say "ever wonder what goes through my head?"

If I hear "oh, did you eat too much sugar as a kid?" one more time....

I cannot show you enough love for this post. This totally nails my own feelings--I think my biggest problem in diabetes management is dealing with all the guilt! I may actually end up responding to this in my own blog. Stay tuned.

And thank you thank you thank you. :D

excellent post. :)

Great post! I've often been blamed for Tristan's diabetes. It's my fault that he has it because when I was pregnant I did this or that. Of course my favorite... it's my fault that Tristan has diabetes because I gave him too much sugar when he was a child! All lovely comments!

I'm glad that you are standing up and fighting.

Well said and thank you

Very well written!
So true. Thank you. This post made me feel hatred towards my disease for a minute. So unfair. Allwe can do is our best.

Thank you, Kerri.

Kerri-
EXCELLENT POST.
The guilt and the blame has GOT TO GO.
They do more harm then good and limit every PWD from their potential as a human.

AND Thanks for the link to my post!

Kelly K


No More Guilt! I just want to shout it from the rooftops.

Great Post!

I'm %$#@ing infuriated that she said that! Did you have an opportunity to set her straight, preferably calling her out then and there?

I'm seriously pissed off, and want to write her. She doesn't know @#$% about diabetes if she's walking around making that assertion.

Your note from back when hit me hard. I remember days of "no cheating" and so many slice right through me stares for highs and ketones.

We all do our best to manage our disease. That is all, management. Complications happen. It is what it is.

It's too bad the stigma still lives. It really has to go.

I remember my endo telling me about a husband and wife she was treating. Both had diabetes, both were eating the same food since forever. One had complications the other not. So it can't be just due to their careful behavior.

But of course we already know this. Is Sue Rago from NovoNordisk? Shame on her for not knowing better.

GREAT post.
Thank you, Kerri.

I second all the comments above. My mom was told by a nurse that if she would have breast fed me as a baby, then I would not have diabetes. Well, she did and I am living with diabetes. I wish the solution to no complications was obvious as reaching a certain blood sugar or doing a particular activity, then a cure would be obvious, too. I sincerely hope that this post dispels some of the myths!

Just reading the first sentence made me mad. Why should we feel gulity for something we didn't ask for?!?! We shouldn't and I'm not! Great post!

I agree with your post, but it kind of got me thinking in another direction. Do I make my kids feel guilty? Do I impose a feeling that may be everlasting? I have always let my kids eat the foods they want, however it has to be in moderation and they usually decide to have it with a meal (if it's dessert, let's say...) meaning they usually are a moderate schedule. I feel like I have worked really hard to make them feel like they are in control of the ups and downs, their diet,and dealing with the unknown...but I wonder....do they still feel guilty? We will have a conversation over breakfast this morning. Thanks Kerri.

Thanks Kerri!

Guilt is an issue that I have been thinking about a lot as I have gotten into my twenties. I think it is an issue that is hard for people without diabetes to understand. I often feel that guilt comes with the ideology of "good control" that if you don't have "good control" it is your own fault and you will have complications.

Often times I feel that parents grab onto this idea because it qualms their fears and makes them feel hopeful. I think it can be a really dangerous message.

Even though I understand intellectually that complications are because of my diabetes, I do believe I will blame myself if/when they happen. The message was loud and clear as a child that if I stayed in "good control" I would never have any problems. That isn't a given and beside diabetes isn't really controllable. I will always have high and low blood sugars no matter what I do. It isn't avoidable no mater how hard I work.

Great post Kerri, very well said.

The "advantage" of diabetes is that you can directly affect its short and long term outcome by conscious action and choice is just so different from most other diseases of its kind. It does sort of take the monkey off the diseases' back and onto the patient or caregiver in our case.

Your have to hate a disease that not only never remits but never accepts responsibility for itself.

Kerri, what a wonderful Post...a MUST read for all!

Kerri, great post! No matter how perfectly anyone takes care of themselves -- irrespective of diabetes or any other chronic illness -- in the end, we all end up in the same place, kwim? Do the best you can to attain the quality of life you want to achieve, and damn the guilt.

Bravo. Amen. Hallelujah. (Can I throw in Mazel Tov too?)

Thank you for speaking about this Kerri. As a parent of a Type 1 young child, I have already faced the major league guilt trips that doctors employ upon me - everything from listing the complication after complication that can happen if I am 'not on top of this diseases 24/7.' As if I'm such a slacker that really, nah, don't really care about my 6 year old having Type 1. There is no acknowledgement from the doctors who see my daughter that she has acquired Type 1 through no fault of her own. And frankly, it's not MY fault either. But I will play the hand I am dealt.

As a parent I am already living with the daily, bone-crushing, spirit-ravaging guilt that diabetes now plays in our life. Every damn day. I sure as heck don't need more of it from the medical establishment or doctors, who do not have Type 1, nor care for a small child with Type 1, day in and day out. It's amazing the advice, as if I should follow her around 24 hours a day, holding a carb book in one hand and a syringe in the other. Maybe they picture that when they talk to me. Cause they talk to me as if that's what I should be doing, what they think the protocol for all this is.

Sometimes there are glitches in the system we have worked out, my daughter and I. There will be a 325 reading and a 'WHAT?' look on Mommy's face. I try so very hard to not pass along the guilt. I try to use every number as information, but you know what, I cannot always say that I know what's going on in her growing body. That ole pancreas left us high and dry. I feel that to raise her well, I have to let her know that diabetes throws us curveballs and all we can do it learn and move on. Enough with the guilt. I am not perfect and sure enough, I produced less than perfect kids. Isn't it time the medical establishment and those speaking, like Sue Rago, learned that? Is it too much to ask?

I have a deal for them - they educate me on best practices, keep me informed about the latest technology,help me regulate my daughter's meds, remind me about doctor appts and specialists and then, you know what, let me live my life and let me parent my child, without the guilt. I have enough of that, thank you very much.

Kerri, I certainly agree, especially related to the comment about "never, ever heard someone ask a person living with a different disease - 'Oh, what did you do to make this happen?'". Ironically, there was news in the past few weeks that some forms of cancer, are in fact, fueled by excessive carbohydrate intake (ironically, this cannot be said about any form of diabetes, contrary to what many ignorant individuals seem to believe). But again, the blame-the-patient mentality has been a cornerstone of diabetes since the conclusion of the DCCT. Deb Butterfield once wrote:

"Yet when all is said and done, the fact remains that the rate and incidence of blindness, amputation, heart attacks, and kidney failure caused by diabetes—as reported by the NIH—continue to rise. Insurance companies and health care providers ponder this failure and, with few exceptions, conclude that 'educating diabetics' to adhere to an intensive regimen of injections and diets will solve the problem. This philosophy has been the cornerstone of diabetes management and consequently the 'blame' for secondary complications has shifted from the disease itself to the person who has it."

The real issue is that patients with diabetes continue to tolerate this, and until there is widespread revolt, the practice of blaming the patient for any issues, rather than their disease, will unfortunately, continue!

Very powerful post! Just excellent!

When I scrolled down & saw that page you found from when you were younger...no words...

Thank you for this post. I don't get a whole lot of guilt comments from others, but I do give them to myself. And I should try to cut that out because every day is different, and there is no magic cure.

Dear Kerri

HALLELUJA SISTER!!!!!!!!
This concept is one of the fundemental changes needed to let the face of Diabetes management evolve.....but how on earth can we get the Endocrinologists and Certified Diabetes Educators to sign off on NOT BLAMING THE PATIENT?

"Funny" things I've heard from the Endocrinology Department:
1) You're not checking enough.
2) "This obsessive checking of your glucose....is a waste of test strips" (UNBELIEVABLE)
2) If you don't figure out (the technical difficulty with your pump) you're going to go into DKA (gee doctor you think I don't know this?)
3) This new pump by mMed w/continuous glucose monitoring is a "Cure" (that one practically gave me another vitreous hemmorhage)

Again, Kerri, thanks for this post, it has an effervescent effect on Diabetic Hopelessness

Sincerely
RhondaReinier

Thanks for this. I hate to admit but when my last A1C came in slightly higher than expected I really beat myself up for it. And when they come in below my "acceptable" threshold I think I deserve a parade. That my sense of self-worth is wrapped up in this number is not ok, and when my body went haywire for a few years and the numbers refused to be controlled it was not only hard on my health, but even harder, I think, on my psyche.

Living like that, I think, makes it more, not less challanging to manage this disease. It's a marathon, not a sprint, after all. And there are countless stories of people who had good control their whole lives and still developed complications.

We can make best efforts to live healthfully, and accept that, at the end of the day, we have a disease that WILL do some damage. That's what it does. But we have insulin and every day I have today, that I wouldn't have had if there was no insulin, is a gift. Not necessarily the days I may or may not have 50 years from now.

Can I print this out and give it to the labor and delivery nurse who, upon learning that I had Type I diabetes, asked me if I was "being compliant"? Still makes steam come out of my ears to this day when I think of it, but at the time all I could do was stammer, "Y-yes...?"

As if me "being compliant" with doctors' orders is all I have to do to keep my blood sugar at a cool 95 at all times. As if diabetes is ever, ever compliant for me.

Well said, Kerri!

I refuse to have one iota of the value of my life lived with diabetes negated by the numbers and complications (or lack) and compliance.

Instead, I celebrate the everyday courage required to live with a disease that does not let up for a single second.

I am proud of being a PWD for 36 years. I am proud of going from one shot a day to two to five to an insulin pump. Of learning to use tools such as urine and test tubes, meters, and now CGMs. Of trying, sometimes politely sometimes not so, to improve understand and alleviate ignorance. I am proud of my calloused fingertips and my mild background retinopathy.

I hope we can minimize and even prevent such "battle scars" in future generations.

But until then, they are my badge of courage.

This is not the first time something you've written brought a tear to my eye. THANK YOU for saying this.

Honestly, you could be textbook "good" or "compliant" and you would still see readings out of range. Insulin, whether delivered by a pump or a syringe, is still a poor substitute for the real thing. We're all just doing the best we can under poor conditions.

Sometimes I feel like diabetes is like flying a plane that you never get to land, with an altimeter that you can glance at once in a while.

This post was excellent. I just told a doctor a few weeks ago "Don't ever make a diabetic feel guilty because diabetes doesn't play by any rules!"

I'm with Chris - Amen.

LY/MI

I don't think I have ever read anything so well written. You hit the nail on the head. Thank you. Having 3 young diabetics, I always get the look of terror when I tell someone. The look on their face is always, "what the hell did you do to these kids!" Like, because I have 3, I must have REALLY screwed up somewhere. The tears are coming because it feels so good to know that there are people in this world who get how I feel. I just don't think I could ever have put it in such perfect words. Awesome post!

Great post! I feel like I do everything I can but I am still having complications with my diabetes. I always go to my doctors, every 4 weeks, I tried the pump, 3 different kinds and nothing seems to help me. My A1C is 10.1 and I have had type one for over 11 years. Now in college, I keep getting sick and I'm just such a mess now. I also always get the questions that you stated, "Well you obviously didn't give yourself insulin." I get this from the hospitals when I get the flu or food poisoning from dorm food.

I'll echo the rest and say what a great post.

As the diabetic sibling of someone battling breast cancer, I know how differently people relate to the two diseases. The assumption is that because I use an insulin pump and CGM, I'm cured, and therefore, not in need of understanding or compassion.
Most of my family participate in various cancer-related activities throughout the year, but I doubt any of them could tell you which is Diabetes Awareness Month.
I once asked my husband why he thought this was the case. He said, "It's because you make it look easy. They don't realize that you deal with it 24 hours per day." I think that's why *I* have so much guilt about a lousy A1c or the presence of ketones or a really brutal low. Deep down, I think that I'm supposed to be perfect; I'm supposed to make it look easy.

And actually, it IS somewhat out of your control. Recent research has pointed to the very real possibility that there is a predispotion (or lack there of depending on how lucky you are!) to complications. In other words, you can be "perfect" and still get them, or "unperfect" and never get them, depending on your genetics. The good news is, this discovery could very well lead to treatments for ALL to avoid them. I cannot wait to have lauren read this. It's wonderful.

Breath taking article Kerri. I can't agree with you more. I once had someone ask me "I heard you got type I cause you drank too many Code Red Mountain Dews in college? Did you not know this would happen? Why didn't you stop?" I put the brakes on immediately and explined that A. I have never even once had a sip of code red, and B. the definition of type 1 diabetes, diabetes, and the difference between type 1 and type 2. I guess its our responsibility as patients and people with diabetes to spread the truth about the disease. It starts with blogs like this. thanks Kerri.

Ah, the notes. I find them all the time written by my 10 year old daughter. I was thinking of saving some of them but now that I see yours I know I have to. Those of you who live this daily and have for so many years are so strong! I hope my daughter turns out like you!!

Interestingly, when she was diagnosed and the chair of endo was hugging me she said to me "it isn't the end of the world but I can't promise you even with perfect care, she won't have complications. We don't know why some do and some don't but you can improve her future by teaching her good practices now." I wanted to hear she'd live to be 100 in perfect health but it was better for me to hear the truth. I will remember your post for a long time and try not to beat myself up if/when we come across complications and will try to free my daughter of any guilt. The disease itself is bad enough the added guilt is a double whammy!

I haven't read all the comments, but one point to be made is that the insulins and other treatment for type 1 from a few decades ago, when you and I were both diagnosed, just wasn't great.

Even if I did take all my insulin shots when told to, and even when I ate from the typical "Diabetes Exchange Diet" which was prescribed back in the 1970s/1980s, it just wasn't sophisticated enough to keep the sugars reined in. Regular and NPH insulin taken once or twice a day (the "state-of-the-art" regimen I followed for years as a kid/teen) just doesn't compare to being on a pump with Humulog, multiple blood sugar tests, and a CGM. So instead of feeling guilty, I point out that the technology that existed for so long (think urine tests) just wasn't good enough.

And even today, if the technology truly did what a functioning pancreas did, no one who used them would ever see out of range numbers. So I challenge the thought that noncompliance equals complications. It's the lack of truly perfect tools to treat diabetes (along with genetic background, I believe) that perhaps leads to complications. Go show your pal this post/responses and get her to revise her statement.

Thank you for this post. I work at an agency for people with disabilities, and I work with a person with brittle diabetes. No matter how regulated we are, no matter how exact we are in carb counting, no matter how much training we give in administering insulin, and no matter how much/little we tweak dosages/scales/meals/etc., things can vary every single day, every single hour. It's not our fault. It's not his fault. It's the diabetes. For now, we just try our very best and call it a day.

Obviously, this Sue Rago must not have diabetes. If she does, then she's delusional.

I'm a doctor (Internal Medicine) and an athlete (I row 5-7 miles most mornings for an hour); I'm pretty cutting edge with technology, pharmacology and physiology. I'm on a pump, used a CGSM, take oral meds for BP and cholesterol. I've never had an A1c greater than 6.2 (may last one was 5.7) in my 15 years of having type 1.

However ... at my last eye exam, I had 2 small areas of retinopathy in my left eye. Obviously, I'm well managed ... but this retinopathy is a complication.

I'd like her to explain this to me given her statement. I'm sure she said that for an effect in a public conference - but it would have p*ssed me off.

Thanks Kerri. I think we've all been down this road.

Here's a related article about how patient-doctor relationships can add to the guilt.

http://www.latimes.com/features/health/la-hew-myturn26-2009oct26,0,6593991.story

This is a great post. You are very impressive, and have a great perspective. Thanks for taking the time to write it!

GREAT post. I have to fight the urge to scream/cry every single time someone asks if my 6 year-old Type 1 daughter "ate too much sugar" or, more often, if we "have her blood sugar under control yet". Seriously, do they think that we're just messing around and not really trying??

People imply that diabetes is something you have total control over. If that were true, we'd take control of the pancreas and make it do what it's supposed to!

Thank you so much for posting this Kerri :)

I deal with these kinds of comments all the time - mostly the assumption that my pump does everything and it feels as if all of the accountability involved in managing my disease has been stripped away. That's not fair, because I work very hard to achieve the control I have, the pump helps, but it doesn't do anything FOR me that I don't tell it to do.

I know that the reality is, if I expect to live a long life, I most likely will have to deal with some degree of complications at some point. It's just how it is. I feel like good control will allow me to delay them, and in all likelihood reduce the severity of anything I may get, but believing it will protect me entirely is very naive. Our bodies are not normal, even with good control. Until better technology for managing diabetes is developed, that's just what reality is for all of us.

Hi Kerri,

I am a brand new diabetic (diagnosed four weeks ago). My case is unusual in that I'm 36 years old, and initial indications are that I'm type 1. In any case, I'm on insulin.

I totally agree that diabetics shouldn't feel guilty about their disease. And I've felt a fair amount of that already.

But saying that you can avoid complications (or at least seriously reduce the risks of them) is an important thing to give new diabetics like me hope. I've sent the picture of that slide from the conference to several people.

I know blood sugar control isn't an ironclad guarantee of a complication-free life, but I believe it's an important component of empowering people to take care of themselves. Everyone seems to know a diabetic who won't...

Amen...I feel like you were reading my mind when you wrote this!

Just a mere echo of what has already been said but - YES. You seriously almost put tears in my eyes from this post. Weird. But still - I can't count how many times I've been told its my fault for whatever. It's my fault I even have this damn disease... Everyone on my husbands side of the family has Type 2 and just assume that it's all the same and I can just make it work just fine. That there is no reason for "unexplained highs" or any of that. I don't get offended at much, I generally roll with life and what life brings me. But when people start telling me that it's my fault I had a "big baby" and it's my fault I even have diabetes - it just kinda sets me off.

Thank you, Kerri!

Thanks for this post. I am sharing it with friend and family -- it is exactly how I feel often and have never done justice in trying to explain it. You, however, nailed it exactly. Thanks.

AMEN, sister! We can be right on top of things doing all the things we should and then one day an illness comes along and our glucose goes nuts. NOT OUR FAULT.

Thank you for speaking up on this, and thank you so much for continuing to fight this fight - it means so much to all of us with diabetes.

This post shot me right in the gut.

Lately I've been having a hard time relating to Brendon and how I should parent him when it comes to managing his diabetes.

It's a struggle and such a precarious balancing act with how to teach him that he has to do things that can't be ignored (i.e. testing, dosing, etc) that other kids never have to worry about. And then letting him be a kid and not having anything to worry about.

But, what would happen to his health down the road if I didn't guide him and constantly keep vigil over him and remind him to do things for himself in order for him to carry on the same habits into adulthood when I'm not around to be MOM.

UGH...D is a shitty disease.

I don't even know if this comment made sense.

You stated it so well. If we are perfect, perfect BG numbers, Perfect a1c, they praise us. If we have some bad numbers or have lows we hear about that too. And the blame game really gets me. Diabetes affects everything we do 24/7 and people who don't live with this don't understand this. I would for one like more words of praise. This is hard enough to deal with. If the person has complications then they are told they are non-compliant. What about the insurance companies and medicare and medicaid being compliant and allowing us to have as many strips as we want and to lower their prices on insulin and other diabetes medications. Also they must realize that one size doesn't fit all. This isn't a take this pill 3 times a day and you will be fine thingy. We all do the best we can and we need more positive feedback.

Kerri -
Thank you SO SO SO SO SO much for this post. I lost 2 aunts due to complications from type 1 at 52 and 45 years old. Because of them going at such young ages, my doctor entertained the thought that because of genetics and all that fun shit, I am at a higher risk for complications from diabetes no matter how diligent I am. At first, I felt defeated, like ok - well, if I'm going to end up with complications anyway, may as well do whatever I want. Then I quickly snapped out of that train of thought (which lasted all of maybe 1 day when I thought about how bad I feel with even a single high or low blood sugar). I am 23 years old, 15 years + into my diabetes, and I have the beginnings of autonomic neuropathy. I have mild gastroparesis, and "benign sinus tachycardia". Yeah, it sucks that I have always had "good" A1Cs and this is still happening, yes it does piss me off some days, but it simply is what it is. And I know that the better I take care of myself overall, the longer of a life and the better quality life I will have the chance to live. So, add me to the list of those who have done everything possible to stave off complications who still have them, and at 23 years old no less. *sigh*
Thanks again for that post. I want EVERYONE to read it... especially obnoxious healthcare professionals who don't understand that complications are completely random and they judge you for having them when you have done everything in your power to try to prevent what sometimes is unpreventable (is that even a word? hmm...).

17 years in and no complications. Now I'm being tested for GI issues - doc thinks gastroparesis.

So much for no complications(?). I think I cried more about losing that chink in my armor than the possibility of dealing with yet another medical issue. Tears already shed and I don't even have firm diagnosis.

*sigh*

From the bottom of my heart, thank you for this post.

Kerri,

This is the most balanced, realistic, and informed piece that I have ever seen on the issue of control. I don't state that lightly as I've dealt with it in both parents, launched insulin products, and served as a pharma training director specializing in diabetes. Bravo! I'm grateful for @AndrewSpong for tweeting about it. I RT'ed: Excellent! I would drop copies of this from helicopters if I could.

Kerri you are an awesome gift to the diabetes community - so eloquent!

Kerri - I'm a new following but cannot even describe how much I'm enjoying following along. I only wish I'd had your blog years ago...it might have alleviated a lot of heartache. Great post because even after 15 years of diabetes - I still get in the mindset that it's my fault. Thank you for reminding me it's not.

Took the words right out of my mouth. When people say those comments to me, I can't help but feel like a failure, and I am doing the best I possibly can. After the jerk pharmacist lectured me that I did this to myself, I told him, "look if I didn't care about my diabetes I wouldn't be here in the first place." It's comforting to know that I'm not alone.

Thank you, Kerri. xoxo

Great post Kerri.

As I said on twitter the day tweets were flying about this, even the best managed diabetes is no match for a working pancreas. Not even close.

And it is not our fault that we struggle, but yet I don't know a single person with diabetes who doesn't fight with that guilt.

Great post, and SO true! I've been Type I for 37 years. Still no complications, but I hold my breath for days after my 24-hour urine test for kidney function, which I have to do more often than once a year now. There's something else that doesn't get covered in this complication story... I said to my endo recently, that I feel lucky that I have the sort of personality that lends itself to good glycemic control. I am a conscientious person, by nature. I am a worrier. My personality is a good one for Type I diabetes. This disease does not choose its victims based upon whether they are little kids, dependent upon the care (or lack of care) given by their parents to their diabetes. It strikes anywhere and everywhere, and it doesn't seem fair that its complications punish perfectly nice, respectable people whose one fault is that they are spur-of-the-moment, spontaneous folks who never worry. Well, there's my two cents, for whatever its worth!

Hiya Kerri, just caught up on this post and its brought me to tears seriously.

I've just been told I have a form of nueropathy...at 21 years old. Luckilly its one that can be reversed. But still. I have never really been badly controlled, I have always looked after myself. And now I have this, and I'm being told its my fault. Its not. I read that 70-80% of diabetics will get a form of nueropathy in their lives no matter how well controlled they are. Some of us are just unlucky. Diabetes can cause complications no matter how well controlled they are.

My latest hba1c was 6.5 (not sure what that is in US numbers), and i'm told thats perfect. Yet despite that, I'm still sat here suffering.

I wish I'd met this woman, because I would have put her straight.

Diabetes causes complications. It doesn't stop and say 'oh no, i won't get you because you're well controlled, i'll go to this badly controlled person instead'. Nope. It gets anyone. And this has made me mad as hell!

:) just my two pence worth there :) xxxxxx

Sue Rago just showed her complete ignorance of diabetes and why complications occur. There is a huge genetic component. I just googled her and she is a corporate shill for Novo Nordisk.

Hello Kerri,
I've been meaning to write since reading your post, but life has a way of getting in the way of things you want to do.
I've had type 1 diabetes for 51 years and counting and have been less than a "model" diabetic. However, now being 62, and counting, I still know the complete ignorance and utter bullshit of others who maintain that diabetes is within the complete control of the diabetic. There is no circulatory disease that I know of who obeys the law even when the person has done nothing wrong.
I've written a book, a memoir, that was supposed to be published nearly two years ago now, by one of the better publishing houses here in New York City. Two senior editors were pushing it, but because of the economic turmoil the world and business has been going through, and because the marketers of that house (and other major houses) believe that diabetics do not read, except "how to" books, they passed. Undeterred I found a publisher and it's not available. I've always believed that there is not enough stuff written about the emotional components of diabetes, and that is primarily what my book addresses. The title of the memoir is, JUNK SICK: CONFESSIONS OF AN UNCONTROLLED DIABETIC. You can just google it or my name and it should get you there.
I would hope that you will continue speaking out against stupidity when you encounter it whether it comes from family, friends, or society. People believe they're the only ones who feel a certain way and it just ain't true.

It isn't just diabetes. People have this insane urge to blame the victim whenever they can. Get mugged? You should've been more careful. Have a debilitating disease that medical science doesn't know enough about yet (fibromyalgia, late-stage Lyme, myalgic encephalomyelitis, aka "chronic fatigue syndrome")? You just need to quit being such a hypochondriac.

Keep educating. The world needs to hear what you have to say.

Thank you so much for writing this, Kerri. That's all. :)

Thank you. My 12 yr old daughter was diagnosed 2 yrs ago and these are many of the feelings that I have too. We need to educate the world, but in the meantime not feel guilty when the numbers might not reflect our efforts. I feel really alone sometimes, so thank you.

Very recently diagnosed type 2. 37, very overweight, don't exercise (use to walk, but an ankle the doctors want to fuse has put a stop to that), use to drink coke like it was going out of fashion just a couple of weeks ago.

No issues taking responsibility for my part in this. No denial. I suspect I was always going to be a diabetic - both my parents are - as are extended family. I have been dreading this but frankly had hoped to get away with my bad lifestyle for just a little while longer. Others certainly do.

Frankly I am disgusted with the guilt trips.

The diabetic associations all claim to help but instead bombard new diabetics with an encyclopedia's worth of sometimes contradictory information. And I do not like being forced to register myself like some dog just to get subsidised strips (Australian govt program) but I'm not rich and have a family so there was no real choice. Not to mention each country's association offers sometimes diametrically opposed advice (low GI emphasised in one site, low carbs on another, low fat on yet a third...balanced diet on another. Leaves me wondering if any or all these methods work equally well. If I pick the wrong one, am I going to die 5 years sooner or go blind?).

What a new diabetic needs is a cheat sheet. "Here are the top 20 things you need to know to start, and here's where to get further info".

I blinked and missed how to actually trigger my lancet during my "education" session with the nurse. She was too busy telling me to drink water if I was hungry, how great she was at exercise and that my eating must have an emotional component.

(Whole other story there. No one will take my inability to satisfy my hunger seriously. It is all attributed to weak will or emotional/psychological factors even though I've had some very happy times in my life. I have IBS and I can be sitting on the toilet with my stomach bloated and in knots to the point where I am almost wishing I was dead and yet STILL be hungry.)

The medical profession is a piece of !#$!. More interest in addicting you to drugs than actually improving quality of life. I actually had one doctor try to sell me some meal replacement shake program when I came in for a chest infection (before he even examined).

I have no doubt whatsoever that the medical profession is directly responsible for stressing and guilting diabetic patients to the point where I don't think you have a control when it comes to heart disease etc. because the rest of the population is not subjected to this humilation and the guilt trips. It is no wonder so many diabetics die of stress related disease, depression, commit suicide, or ignore their condition till they are deathly ill, "fall off the wagon" often etc. (I know very few people with the self control that diabetic associations describe as ideal).

I am not anywhere near as bitter at the disease and the control I now have to take as at the social "support" networks that are so ironically named.

And you know what. If I choose to eat the wrong things occassionally I am going to do it in a controlled and planned way. I will not binge and then be good, and I will not be asking anyone for permission or forgiveness.

Can't wait to have work, friends and colleagues judge (and in the case of work possibly place conditions) on my management of the disease. I'm sure that won't leave me depressed. Oh no. Not one bit. I should be jumping for joy at my new healthy lifestyle.

And if one more person asks me how I feel, and I have to grin and tell them I'm fine, I think I'll throw up what little food I've had.,

So incredibly well said. I think the "blaming the patient" issue results from a couple of things. First, adult endos primarily see T2 patients; we T1s are the minority. With T2, there are many things people can do to prevent the progression of the disease, and often the disease is brought on, in part, by being overweight, something that is often seen as being within a person's control. But with T1, the disease process is what it is. Without insulin, all us T1s would be dead within weeks or months of diagnosis. Unfortunately, endos have a skewed perception because their point of reference is pulled in the direction of T2.

In addition, I think many people (doctors and others) fail to understand the intensive management that T1 requires. Cancer is intensive, but generally only for a defined period of time. T1D requires intensive management for years, with no end in sight. It's not realistic to expect people to be perfect throughout all of this. Yes, the tools we use have improved over the years, but they are still far from perfect. And human beings are far from perfect. And it's impossible to do something perfectly that you have to do so many times each day.

I work so hard to try and stay healthy but I have D-related complications. I am just now beginning to accept that I can do my best, but there are some things that are just part of the disease process and that I cannot avoid.

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