Taking the blame and shame out of complications

WRITTEN BY: Renza Scibilia and Chris Aldred aka “The Grumpy Pumper”

Most people living with diabetes will remember conversations they’ve had with healthcare professionals about diabetes-related complications, and often, those memories aren’t especially positive.

For many, it was as early as diagnosis that the scary, ugly complications monster first appeared under the guise of ‘ Do what you are told, or all the nasty things will happen’ . For others, it wasn’t until further down the line. And for some, their diabetes diagnosis coincided with the diagnosis of a diabetes-related complication.

Regardless of when, it’s important that complications are not spoken about in a blaming and shaming way.

Renza and Grumps on complications

For the last couple of years, diabetes advocates Chris “The Grumpy Pumper” Aldred (UK) and Renza Scibilia (Australia) have been suggesting it’s time to find a new way to talk about complications.

Chris (better known to all as Grumps) was diagnosed with a foot ulcer two years ago and used that diagnosis to start an online campaign encouraging people with diabetes to open up about their own diabetes-related complications story. Using the hashtag #TalkAboutComplications, more and more people shared their experiences of living with different complications. For some it was the first time that they felt comfortable talking about the issue and sharing their own stories. The online discussions quickly grew, bringing together a collection of tales from people around the globe, and providing a digital safe space for peer support and encouragement.

Renza works at Diabetes Australia and was involved in the development of their language position statement which started the #LanguageMatters in diabetes movement over eight years ago. She was interested in the link between how the words used when discussing complications impact how people feel emotionally, as well as exploring how to make people feel more comfortable speaking about what is often seen as a taboo topic. She knew that reframing the way we talk about complications is critical if we want to stem the stigma and blame that seem to go hand in hand with them.

Together, they have travelled around the world, speaking at conferences and events, been guests on a number of podcasts, and written for several digital and print publications about their work in this area.

As people continued to share their diabetes-related complications stories, it was very apparent that there was a sense of blame and shame that added to the burden of dealing with the actual complication. This shame came from a number of avenues. Often it was healthcare professionals who suggested that it was the fault of the person with diabetes. Others spoke about feeling that shame from family members who commented that it was because they “hadn’t looked after themselves properly.” Perhaps most hurtful were comments from other PWD who chastised others from our own “tribe,” demanding they start some aggressive management plan (most often, LCHF was suggested) which they promised would have resulted in no complications. Blame from others walking the same path seemed just cruel.

Comments such as these only add to the anxiety, stress and fear that frequently go alongside diabetes-related complications. We are conditioned to feel that fear, and we are also conditioned to believe that all complications are entirely preventable.

Part of the #TalkAboutComplications discussion has been to encourage people to think about their care as a way of risk reduction, rather than use the term prevention. Too often, we have seen communications suggest that complications are preventable, if only people diligently follow the directions of their HCP team and run an A1c under 7%. And yet, we heard time and time again of people who really and truly had done that, and yet were still diagnosed with complications.

True story

In another example of diabetes refusing to play fair, there are no guarantees, and even being the “perfect PWD” is no surety that complications would stay away. (While the DCCT did certainly show a reduction in rates of complications when PWD are able to attain an HbA1c below 7%, there is no absolute fail-safe way to stop all complications.)

But, imagine how different we would feel if instead of finger-pointing, discussions about complications were done in a safe, human and gentle way. Instead of discussing them as an end point, with no light beyond that, the conversations were about the possibility of them, risk reduction and no blame at all. Rather than admonishment, there would be a feeling of support if it happens. That would be a far better way to start – and continue – conversations about a topic that, for many, has been nothing but fraught with fear and anxiety.

Living with diabetes is hard. It’s really hard! It takes motivation to keep going. Add to this a diabetes-related complication diagnosis and it just doubles down. Treatment can be hard, and the outcome may not be what we want. Even when the outcome is what we want, it doesn’t necessarily end there – for many, there will still need to be consideration of this complication for the rest of our lives.

Diabetes and its related complications are not just physical; they are emotional too. There is a psychological impact of both to all PWD. Even those that do not have a complication, there is a fear of developing them. The Diabetes MILES study showed that the greatest problem area across all diabetes types was worrying about the future and the possibility of developing serious complications (1).

And that’s just one of the reasons that it’s important to get the language around diabetes-related complications right! Adding to the burden with words that blame and shame can demotivate. And we all know that lack of motivation will never improve physical or psychological outcomes.

The language around diabetes-related complications has to change. #LanguageMatters and we need to continue to #TalkAboutComplications in a way that encourages discussion and supports people to find the help they need.

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I’m experiencing the personal side of the blame/shame thing right now. While my control has been excellent since diagnosis (4.6%-5.0% A1c), I have neuropathy or something like it that is getting worse and worse in my feet, legs, and now my right hand and arm.

I have an appointment with a neurologist tomorrow to discuss possibilities, treatments, etc. There is a very good chance that I actually have early-stage MS or some similar autoimmune nerve issue. But my head still tells me this is all my fault for not controlling my diabetes better. I’m not sure I can keep my BG in better control than it is now unless I just stop eating, stop exercising, and maybe cut my liver out.

Despite what I know about this disease, know about neuropathy and autoimmune disease, know about my own body… my head still tells me:

Well, you have diabetes and neuropathy, so clearly you are doing something wrong.

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It’s a weird psychological and emotional context that surrounds diabetes and complications. People close to the person with diabetes such as the doctor, close family members, colleagues, and even acquaintances are confused and many times Ill-informed about the facts of diabetes. Myths pervasive with incorrect facts lead to hurt feelings and bad overall karma.

People who do not have all the facts often fall back on the fundamentalist religious beliefs surrounding the “seven deadly sins” including gluttony and sloth. I think that emotionally, people are fearful of suffering the same fate and are looking for ways in their own mind for them to make a convincing distinction to themselves is avoided then they can dodge a similar fate. Vocalizing blame and shame soothes some inner need to harden a frightening vulnerability.

People need to deal with the reality that as long as anyone of us is alive, we are vulnerable to the vagaries of disease and accidents. Funny that people are often quick to concede that accidents don’t necessarily associate with blame but disease is somehow earned.

@David49, I wish you good luck with whatever you discover at your doctor’s visit and beyond. That is a daunting prospect. You’ve done everything you can do to diminish your health risks.

What I’ve learned about diabetes complications and other adverse health diagnoses is that my response to any new reality will have a lot to do with my quality of life and degree of health going forward. Quickly accepting any unfortunate diagnosis (after the due diligence of a second opinion) and learning as much as possible about it is what gives me power and hope.

Now I realize that coming to grips with a bad diagnosis should not exclude dealing with the grief that ensues. May Lady Luck smile on you!

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So sad to hear how you feel. There are so many things that happen in our lives that are just part of our life as we develop thru it.

It has made you who you are today and I am willing to bet that is a wonderful thing. Diabetes just happens to be a part of that.

Hope you get some positive news at your apt. :slightly_smiling_face:

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David - given your analytical nature, you know when something isn’t right.

There are several dozen things that could explain your weakness (pain? numbness?), and most of them aren’t diabetic related, although as T1’s we tend to jump to that conclusion.

Keeping my fingers crossed for you :crossed_fingers:

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On the other hand, I don’t like it when doctors or people tell me that I have just been lucky to live for 60 yrs with diabetes and be in such good shape. I work damn hard every minute of my life to not have more complications and to reverse what complications I did have because of 22 years of urine testing.

Maybe I am somehow lucky in the genetics department, but I also know that extreme discipline and determination got me here.

I know others who tried to do everything right and still ended up with complications. Diabetes is not fair to say the least.

I had a boss who was going to see a friend who was losing his second leg to poorly controlled type 2 diabetes. My boss looked at me and said he has the bad kind of diabetes not like you. You have the easy kind. Say WHAT??

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Oh David, how in the world could you have taken better care of your diabetes? I don’t see how that could have been possible. I think that life has been very unfair to you.

Please try not blame yourself when you did NOTHING wrong. You are just making yourself more miserable. Please praise yourself and know that you are a hero.

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David, the one time I had convinced myself I had neuropathy, my doc sent me to an orthopedist who identified a pinched nerve and told me how to avoid it. Don’t rule out other causes, because neuropathy as a complication of diabetes seems extremely unlikely in the case of someone so well controlled.

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Mila, when I was diagnosed nearly 40 years ago, the standard diabetes education on complications I received, was for the staff to show me a medical book filled with gory pictures of gangrenous limbs and amputations. And I was told to be good and compliant or I would end up that way.

Not a particularly useful education!

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I’m having a similar experience right now. Starting about a month ago my right calf became numb and sometimes painful. The level of numbness went from mild to bad for no apparent reason. I assumed diabetes finally got the upper hand in our wrestling match and that I now had a complication. I called my endo. He knew I fractured my spine 19 years ago and also have osteoarthritis. He said it was much, much more likely a nerve issue from one of these than diabetic neuropathy. I see my rheumatologist next month and hope to learn my endo is right. If not it’s on to my neurologist. Only If both can’t identify a cause will I take this back to my endo.

I agree with others about neuropathy… I was sure I was developing it due to lots of numbness and tingling in my hands and feet, and it turned out to be vitamin B12 deficiency in my case. Those symptoms pretty much go away as long as I take daily B12 supplements (I have my levels monitored and they drop very quickly if I stop the supplements).

I consider my lack of complications after 28 years of diabetes (diaversary is today, woot!) to be part luck and part a lot of hard work. I think it’s unfair to say it’s just luck, and unfair to say it’s just control. It seems to be a combination of both. I’m hopeful that I’ll continue to have no complications for the next 50 years, but if I do develop them, I’ll know that I’ve done everything reasonable to control my diabetes to the best of my ability.

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I was told I would likely be blind/vision impaired by 40, and possibly have lost a limb by then.

Probably would have been true if BG testing, CGMS, insulin pumps and improved insulins didn’t come along.

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OMG, @Tim12.

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I agree. It’s like when you hear a friend has lung cancer and say, “Well, he smoked.”

Thanks for all the kind words, folk. I just had an appointment with a neurologist, and the diagnosis is… wait for it…

MORE TESTS (of course).

He also thinks it is very unlikely to be diabetic neuropathy, so I have to come back up here to get more pokes with electrified needles, then get an MRI, and a spinal tap.

He thinks it is most likely to be MS, chemical exposure causing something MS-like, or another demyelinating autoimmune disorder. Which all sounds a lot scarier than diabetic neuropathy :rofl:

When I posted my original reply, I knew that my pain and motor impairment was almost certainly not related to my diabetes. But the myths of control and self-blame are so pervasive that I still feel those feelings. All of my education, experience, and knowledge are no defense against a culture that condemns people for being ill.

Again, thank you all for your kind words. I’ll let you know how it all turns out if I ever find out how it all turns out haha.

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The blame and shame drives me crazy! And many of us with diabetes are the worst. The reality to diabetes is it just doesn’t always play fair!
I have meet many people who work very hard at their diabetes and run numbers that use to leave in awe. I mean the numbers some of these people run were incredible. I could never have hoped for them. And even with those tight numbers still had complications. And still heard the blame and shame lines from fellow PWD and doctors. I mean how good does one have to be to make everyone happy with a persons efforts? The reality to diabetes is it isn’t fair. I don’t know if it’s genetics or environmental or the full moon. But everyone who has any type of diabetes complications is not at blame and even if it is someone who completely checked out on their treatment plan, is it their fault or the fault of their medical team not finding the way to break through their fear/disbelief/anger/hopelessness.
I just think blame and shame helps no one. A little understanding and hope would sure go a long way.
And again, I will say, it is up to the patient and medical team to find what will work best for them in their treatment plan and continued well being.
Did I hear all those horror stories when I was a child? You bet! Did they scare the crap out of me? You bet! Did it make me do better? Not so much. The treatment plan back than was one shot & urine testing. How could I do better? But it did make me take my injection everyday and it did help me eat better. But those horror stories worked for me instead of driving me into a shell. I have worked hard at trying to avoid those scary stories. I have been very, very lucky! I am thinking my genetic makeup has probably helped because I was not running good numbers for probably the first 20 years. And 49 years in still no complications.
I just wish we could stop blaming people for their complications. We don’t know what they deal with each and everyday, what their life/work/family situation is. A little love, support and understanding can go a long way.
I hope we are moving away from the scary stories at diagnosis. Those outcomes are becoming a thing of the past with proper care. Not incredibly tight management, just good enough. Ok, enough of my rant!

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Well stated, Sally. We’re here to support, not judge.

Now, we do need to raise an alarm if one of our peers is making an obvious mistake that you think compromises their safety.

There are many paths to diabetes success and the one you’ve found may not work well for everybody.

When in doubt, temper your comments with kindness!

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I place some of the “blame” for my neuropathy and retinopathy on docs who were scared of and fixated on hypos, and also think HbA1C is the be all and end all for evaluating BG control.

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