What is diabetes distress?

Mental and Emotional Wellness
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According to Dr. Lawrence Fisher, Research Director at the Behavioral Diabetes Institute (BDI), Diabetes Distress or “DD” refers to all the fears and worries that people with diabetes experience on a daily basis. Fear of complications or the fear of hypoglycemia are examples of the types of concerns that may cause DD.

I interviewed Dr. Fisher last month to discuss DD and who was at risk for it. He was adamant that I understand how Diabetes Distress is a very normal part of living with diabetes affecting not only people who have the disease but also family members, especially parents and partners. Additionally, DD is not a complication of diabetes but the emotional side of diabetes. If injecting insulin is a physical component, then fearing for your life because of hypoglycemia is an emotional part of the disease. The question isn’t: who is at risk for DD, but when during an individual’s journey with diabetes, are the risks higher? There are common periods when people have the greatest probability of feeling elevated levels of distress about their life with diabetes. They are:

  1. Around the time of diagnosis and at the time of learning how to self-manage diabetes
  2. At the emergence of a complication
  3. Adding to or switching a medication
  4. Switching healthcare plans
  5. Switching healthcare providers (finding a new doctor)

Back in 2013, after the severe hypo, I was faced with a good deal of distress and so were my husband and daughter. It took some time for me to regain confidence, and I suffered from anxiety. My husband was concerned for weeks about the possibility of another episode, which frequently happens in the severe category. I took our daughter to a counselor to address her worries and to give her room to express her feelings. Together we discussed a plan to prevent another severe hypo from happening again. It was clear that back then each one of us needed our voices to be heard. After that, it was helpful to develop ideas for prevention and take action.

Dr. Fisher, and Dr. William Polonsky, President of BDI, developed the Diabetes Distress Scales for people with Type 1 diabetes (T1DDS) and Type 2 diabetes (DDS) as well as scales for parents of children with Type 1 diabetes and partners of people who live with diabetes. Depending on a person’s type of diabetes or connection to the care of a person, each scale was developed for healthcare professionals to use as a tool to generate discussions with their patients about the emotional side of diabetes, which is usually not given a good deal of attention.

The 7 major sources of DD among T1D adults (BDI)

1. Powerlessness

Feeling that one’s blood sugar numbers have a life of their own; e.g., “feeling that no matter how hard I try with my diabetes, it will never be good enough.”

2. Negative Social Perceptions

Concerns about the possible negative judgments of others; e.g., “I have to hide my diabetes from other people.”

3. Physician Distress

Disappointment with current health care professionals; e.g., “feeling that I don’t get help I really need from my diabetes doctor.”

4. Friend/Family Distress

There is too much or too little attention paid to diabetes amongst loved one; e.g., “my family and friends make a bigger deal out of diabetes than they should.”

5. Hypoglycaemia Distress

Concerns about severe hypoglycaemic events; e.g., “I can’t ever be safe from the possibility of a serious hypoglycaemic event.”

6. Management Distress

Disappointment with one’s own self-care efforts; e.g., “I don’t give my diabetes as much attention as I probably should.”

7. Eating Distress

Concerns that one’s eating is out of control; e.g., “thoughts about food and eating control my life.”

WRITTEN BY: Elizabeth Snouffer

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I did a 180 flip with regards to my diabetes-related fears.

In the beginning, I had no test strips (other than useless urine test tapes), no decent insulins, and no carb counting (1978). So…WHEN did I get my first low, you might ask? Well, it was the FIRST day of taking insulin, while at work, far from food. I had NO IDEA what was going on with my sudden weakness. I went up to the dispatchers office (at a dealership) to call my doctor. Got someone on the phone, told them how I felt, and they practically yelled at me to “GET SOMETHING TO EAT NOW!”. I don’t remember the details of where or what I found to eat. That was the day my fear of hypos began and it was UNRELENTING until I started pumping in 1996. Not even using meters, which occurred in 1992, kept me from panicking when I’d drop fast. I was truly sure I’d die in my sleep from a hypo. For context, I would frequently drop at an insane rate of 100 mg/dl in less than 10 minutes. If you want to get your heart tripping, try a fast drop like that!

Fast-forward to around the time I got my pump which caused me to do lots of reading about pumping technique and generalized diabetes management. Couple the technology, the added knowledge, and better insulin and my fear of hypos soon reduced to a minor annoyance. My biggest thing now is, as has always been since diagnosed, a fear of being to high and damaging my body. I’ve already gotten PN and I don’t want any more complications.

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Thanks for posting this, @Mila. Diabetes distress is a real thing. We need to be aware of its action and do our best to mitigate the stress it causes.

Over the years, I’ve felt diabetes distress from the seven sources listed in your post. I’ve lived long-term without satisfactory resolution of these issues. I just tried to soldier on as best I could, not a happy situation.

The single biggest help for me was learning how to control my blood glucose using a low carb diet. The law of small numbers convinced me that eating fewer carbs meant I took less insulin and my mistakes were therefore smaller.

This might seem like an overly simplistic statement, but I cut my total daily dose of insulin to less than half and my glucose variability dropped like a rock. I went from feeling like I lived as if performing some sort of risky high-wire act to feeling like I walked confidently with minimal risk.

I know it’s a worn cliche that nothing succeeds like success, but it is so true. When the metabolic daily drama of the glucose roller-coaster receded into the distant past, I felt the energy and motivation to approaching each day with confidence and sustained happiness.

I realize that this tactic may not work well for everyone but it’s improved my quality of life so much. I’ve been happier living this way for the last almost seven years.

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An Eight kind of distress: Diabetes on TV and in movies.

I remember being seriously freaked out by the hypo scene in Steel Magnolias in… 1989? At which point I was still a “new diabetic” (well 7 years at that point). Since then I’ve had a couple actual 911 calls and ER trips for hypos and it doesn’t seem like such a big deal. Not trying to belittle anyone’s distress or worry or the actual danger of hypos. But you will get through it!

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See - all of these - are double edged swords.

If I don’t carefully think about everything I eat then I’m a careless out of control diabetic not watching his diet.

If I do carefully think about it then I’m in Diabetes Distress.

All of them can be turned on their head this way.

And while I’ve never gone as far as outright diabulimia via DKA, yes I do think to be realistic that I have some eating disorders. Even carefully limiting my insulin usage and food consumption in an attempt to lose weight would technically put me in diabulimia by its most common definition.

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What has helped me enormously besides saying goodbye to urine testing, is never minding who knew that I had type 1 diabetes. For some reason I just had the attitude that this is who I am, so I am not going to hide it. I was dx in 1959 after almost dying. I was 8, so being a diabetic is just part of me. Know me and know that I have diabetes.

Even after being turned down for my first full time job, because of having diabetes, I have never hidden it although being turned down caused me anger and depression.

I have also have a very loving calm husband who has always helped me when I needed it and never freaked out or became depressed himself. I have been extremely fortunate.

I don’t especially like having diabetes, but it is what it is.

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I was diagnosed in 1985. 3 years after having brain surgery for temporal lobe petitmal epilepsy. I was finally starting to feel normal, then the diagnosis of type 1 came. At first, I thought the heck with it! “I’ll eat what I want when I want!” That didn’t go on too long, thank goodness. I then met my husband. We dated for a year and things started to change. I wanted to have children so I read as much as I could and behaved. I have 2 healthy sons and did it all on injections. It’s not a perfect science. I had alot of severe hypos where I needed help from someone else. My neighbor found me once and my dad found me. All just by chance. He was dropping by to see how I was. Everybody was safe. My kids were just babies and other than getting in the garbage that was the worst they did. My doctor gave me a good scare. He told me that I could be a vegetable if I lost anymore brain cells. I was constantly testing to make sure I didn’t go too high or too low. Diabetes has progressed a little over the years with cgms and faster testing and better insulins. I thank god every day that I am healthy.

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In 30 years I’ve overcome the few that concerned me. First 20 years, I did conceal the encumbrance, but worst part was carrying on like nothing was wrong other than taking insulin (and not testing enough to keep A1C down), Hypo Distress only appeared during past 10 years when I took more interest in overall long-term health, at which point started having Hypo events. Overcame that distress 5(?) years ago when I insisted on CGM. Now I’m satisfied with keeping A1C around 7 and proceeding with life without stressing over everything else diabetic related.

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Clearly, health insurance doesn’t give a damn about Diabetes Distress. My insulin rx is still in denial since December 20. Insurance wants me to switch to “THEIR preferred” insulin. It is not the insulin I prefer… who gives a crap.

Nor do medical professionals give a darn. Nurse in endo office asked “why do you need to take that insulin?” God help me. This is their job… to understand diabetes and insulins. Yeah. They are busy. Too much to ask.

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I’ll add a #8: Distress about the future. I used to think I’ll live to 100 (both parents made it to 98, grandfather 97, etc.) but now I worry that I will not make it that far. My main strategy for BG control is staying on my feet and active…what happens if I’m bedridden? What happens if my brain erodes enough to make self-management too difficult? I am hoping that tech improves enough to reliably handle a tired old 99 year old Type 1.

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tHANK GOODNESS you all relate to this. Nurses DO NOT understand. A lot of doctors do not either. It is comforting to know we all think about this. It sucks but what exactly IS normal anyway?

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I recall at 18 seeing Steel Magnolias. Based on a true story. I made it to 50. Type 1 is really hard but it is what it is; you just do your best.

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Most of the time I don’t worry about it. But the biggest worries I’ve had were surgery, the first I came out too low and the second too high. That I found out they don’t test when you’re in surgery,and that in the dentist chair I drop so when I had a surgical tooth extraction, I had to try to figure go in high and cross my fingers it was enough! And now we’ve moved to Hawaii so we can snorkel in retirement to keep us healthy, so how long can I stay out in the ocean and not have issues? Trying to figure the temp basal rate and yes I take candy out with me in a waterproof container!

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I’d say, what diabetic does not experience DD!? Try as I might, I still experience too many lows. Lows for me are related to exercise and inability to understand my body and it’s response to daily exercise and use of insulin. I know many of you are very successful at this, thank goodness, so I know it is doable. I won’t give up but it does create a certain amount of DD!:frowning:

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Take heart from the example of Dr Bernstein who is currently about 84 years old, diagnosed T1 at the age of 11 and still doing vigorous daily exercise as well as being mentally sharp as a tack. He gives a live question and answer “Teleseminar” at the end of every month, also available to download, so anyone can verify that his brain has definitely not eroded! If you are not familiar with his classic book “Diabetes Solution” you might like to visit his site http://www.diabetes-book.com. He also has a Youtube channel with lots of brief videos.

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@Trying How or why it took me > 50 years of living MDI with T1D to discover the root of all my bad hypo issues were carbs I’ll never know.

But since I eliminated most carbs from my diet (including all refined sugars as well as whole grains such as breads, pasta etc), life has never been better.

My BG control has never been better, nor does is take much work :+1:t3:

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Yes, I’ve seen your amazing results, @Jimi63, in various threads here! I don’t expect I could ever achieve those results consistently. Maybe for ONE day! :slight_smile:

I see many here are low carb. I am not low carb per Dr. Bernstein’s method, but I rarely eat refined sugars, grains, bread, pasta and if I do, yes, they have a HUGE impact requiring non stop corrections, or so it seems!:frowning: My diet consists mainly of vegs and some fruit so not low carb. Also, I don’t think fruit is allowed on the Dr. Bernstein diet:(

I make several of the great, low carb recipes (chia pudding for breakfast, flax seed/almond flour pizza for dinner) here though and they have made a great difference in combatting highs. Thanks to everyone for sharing.

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Make no mistake - while I’ve watched Bernstein’s YouTube videos and have read others describe his rigid methodology, I’ve never read any of his books and certainly don’t follow his prescribed diet. Others refer to “Keto” as the Bernstein diet; in fact it’s anything but.

The Keto lifestyle a more choices of what food types you will no longer buy or eat, and not a certain amount of protein balanced with fat. Everyone’s metabolism is different, hence everyone’s keto balance of fats & proteins is different. Not to mention that at different times, you make adjustments.

Because I was a diabetic child of the '60’s I have multiple complications caused by not having the ability to test blood BG (I’d had T1D 20 years before the at first at home meter was first released). One of these is renal disease, which I’ve dealt with for 23 years. Hence no “high protein” Bernstein approach - my kidney’s can’t handle the load.

A year ago I didn’t know anything about ultra-low carb and keto. Now I can credit it with extending my life (with no BG swings or Hypos).

Give it a shot. The only thing you have to lose is all your worries about hypos during workouts and longer-term complications :smiley:

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Oh, sorry, I didn’t mean to imply you were on the Bernstein diet. I’m not familiar with the keto diet other than just hearing about it. I’ll research it. I hope it will work for vegetarians!

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It is something I deal with a lot! I know shocking that Sally who is lasso positive and upbeat can have such negative thoughts swirling around her head.
I have been through a very long stretch of depression and did all kinds of meds and nothing helped. And during those many years, I was what some call functional depression. I did what I needed to do but the basics. I got my kids up, feed them, packed their lunches, got them to school, and if I was working, took a shower and went to work. If I was off, I would crawl back into bed and sleep the whole day away.
Finally one of my endos realized that I was depressed and recommended Dr. Polonsky at BDI. It was great to talk with someone who really got it. And much of my diabetes problems were doctor related way back at the beginning.
Many years later I ended up back at BDI in a tuneup workshop and realized that my depression was back. So I took another workshop with them where is discovered my core beliefs that were formed so far back, were diabetes related. I am a failure and I’m not good enough. And my diabetes only enhanced these beliefs.
So here I am again, realizing that this is not depression but distress. And again I am so blessed that BDI is here in my area and they amazingly are having another workshop dealing with distress. I think if I just want to sit down and cry or if I think how easy it would be to just end it all, I realize I need help. So once again, upbeat and positive Sally who always tries to see the best in everything is wearing thin. And I am thankful, I have the resources to get some help.
The diabetes side of my life while it sucks sometimes, I can handle. The pump site changes, the CGM usage, the report analyzing, the carb counting and boluses, I’ve got that. It is the mental side that can just rip me to shreds sometimes! I have so much going right for me and I know that but wow, I feel exhausted and just want to cry! Distress is a very real thing and until you have been in that big dark hole of depression or the swirling cycle of distress, it’s hard to understand. But I get it because I deal with it all the time and throughout my life.
So once again, I will drop all my walls that I put up and bare my sole and see if I can find some relief. My first class is tomorrow to see how distressed I am!

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