Tomorrow is World Diabetes Day (WDD). Depending on which camp you’re in, this will mean one of two things to you:
- Great! We can eat ALL the cake, and and tell diabetes jokes about ourselves because hello – diabetes on a plate is SO funny! (Actually it’s a bit lame, but that’s not my point).
- It’s a day to try to raise awareness of what a serious, and debilitating condition diabetes is to live with, and just how important funding is to finding a much needed cure.
Guess which one I’m going with.
I’ve published lots of my thoughts on living with diabetes previously though, so today I’m handing over to Carolyn, a fellow diabetes mum who has given me so much moral support over the years, and who campaigns in America for greater awareness of type 1 diabetes. Read her story to find out why jokes about diabetes are so offensive, and scroll down for a list of type 1 diabetes symptoms.
Diabetes jokes – they’re just not funny!
” I started writing this article 2 weeks ago, when the latest diabetes joke (by Paul Hollywood on Bake Off) kicked off some internet fury. I, like many diabetics, was hurt and angry over the claims that we’re all snowflakes who can’t take a joke, and I wanted to rant. Then I spent some time reflecting on what I’d written and decided that perhaps there might be a better way to make people understand why jokes about diabetes are so hurtful, and to change things for the better. The following is my story…
What is a type 1 diabetes diagnosis like?
Seven years and one day ago I wasn’t aware of World Diabetes Day either. The 14th of November was chosen for WDD as it is the birth date of Sir Frederick Banting, one of the co-discoverers of insulin in 1921. Less than 100 years ago, if your child was diagnosed with type 1 diabetes (T1D) they would be dead within a year. No surprise then that the discovery of insulin is known as one of the greatest medical breakthroughs of all time. I won’t go into too much detail here, but I would encourage you to read about their discovery and the other co founders. I always think this would be a fascinating subject to learn about in schools.
So my family’s story started 7 years ago. November 13th, 2012 will be forever etched into my memories as the worst day of my life. My son may well say the same. Matthew was 11 years old at the time. He’d always been really small height wise and was way underweight for his age. He always struggled to gain weight. But in October 2012 it was becoming very obvious he was actually starting to look skeletal. I had taken him to the pediatrician’s office a few times from August to October, because something wasn’t right. I just didn’t know what was wrong.
Finally less than 3 weeks since our last visit to the pediatrician, I started to Google his symptoms. The most striking was excessive thirst. He always drank a lot of water, but when I say excessive I mean really over the top. He was constantly drinking, even during the night. Every Google search for excessive thirst and weight loss brought up Type 1 Diabetes, a condition I pretty much had zero awareness of. Still having no idea of the danger my son was in, I decided to take him back to the pediatrician the next morning.
If you don’t know what heartbreak feels like, imagine your child’s doctor sitting down (something he had never done before), and giving you the worst news of your and your child’s life. That they have Type 1 Diabetes, is in life-threatening diabetic ketoacidosis (DKA), and will need to be admitted to hospital immediately. He didn’t go into specifics as time was of the essence, and he also said the endocrinologists in the hospital would do a much better job of explaining T1D than he could.
Is it my fault my child has diabetes?
I’m sure any parent can tell you that seeing your child hooked up to IV drips and fighting for life is utterly soul destroying. Thankfully for my son, he survived his late diagnosis of T1D. However, there are others who have not been so lucky. Then there was the guilt. I remember asking the doctor what I did wrong. I was a home cook who believed in organic food where possible, non GMO, no fizzy drinks, and treats only in moderation. When my kids were babies, I steamed and pureed organic fruits and vegetables. Both of my babies were breastfed. I believed that I had done everything that I could to keep them as healthy as possible.
Media, news articles, tv shows, movies, celebrities, just about everything you see, hear or read about diabetes implies that sugar is to blame. Now I felt shame; I wondered if I had caused him to get diabetes. However, the doctor told me there was nothing I could have done. Type 1 is a life-threatening autoimmune condition and he likely had already had T1D for about a year, but we just didn’t know it until he reach the final dangerous stage of progression. Then you get the kicker – they won’t outgrow it and there is no cure. This. Is. Forever.
What happens when you leave hospital after a diabetes diagnosis?
After the first 24 hours, and when he was on the road to recovery, we then went into the next phase of learning how to look after our son now that his pancreas no longer produced insulin. And let me tell you, it’s a minefield!
The first few months were the hardest. I cried pretty much every day for 3-4 months. I have a younger daughter too, so I was trying to juggle doing what I had to do for my son with trying to ensure that my daughter didn’t feel suddenly abandoned. There’s not a parent out there who wouldn’t take T1D away from their child if they could. There are so many unseen moments that hurt physically and mentally.
Over the years you do progress in how you handle the daily management of diabetes. From the early days to years later, your feelings change too. Most of us strive for child first, diabetes second. But sometimes diabetes does get in the way of your life. Pretty much every day you’ll have to stop what you’re doing to treat a low or a high blood sugar. Often diabetes wakes you up several times in the night to do the same.
The psychological impact of diabetes
Burnout is another huge element that people don’t realise is part of living with diabetes. When you have to do the same thing every single day and night, and no two days give you the same results, it gets frustrating. You want a day off, but that’s not an option. It’s no wonder that diabetes and depression go hand in hand, with around 80% of people with T1D destined to struggle with their mental health at some point.
Teens with type 1 diabetes have a much higher suicide risk than those without. Lots of children are bullied in school because of their condition. While many teachers try to be understanding, some are not, and tend to view families living with the condition as being over-protective. As a consequence of not understanding the seriousness of T1D, schools can become a scary place to send your child. One girl we knew had a low blood sugar at school, which she treated with Skittles. Her teacher asked her “Why are you eating Skittles? Didn’t that cause your diabetes in the first place?” The correlation between jokes about diabetes and sugar mean that people don’t realise that if you have a type of diabetes that requires insulin, you need sugar to save your life if too much insulin is in your system.
So how do you perfect insulin doses?
You’re reading this and thinking “Well don’t give too much insulin!” right? Sadly, it’s a lot more complicated than that. There are so many unique factors in the body that are different every single day. There is no set dose. Our consultants eventually have to teach us, when they feel we are ready, to make our own dose adjustments ourselves. But it is always different. There’s no right or wrong. It’s often our best guess, while administering a hormone that if you give too much or too little can cause life threatening consequences. Children, adults and parents doing this are definitely not the snowflakes the non-diabetic joke tellers would have you believe!
I am lucky that where we live there is a huge network of families living with type 1 diabetes. We all support each other, but what’s striking is how dynamic and individual the disease is and how it affects us and our kids in different and in the same ways. There’s an acronym used amongst diabetics that rings true nearly every day – YDMV. It means Your Diabetes May Vary, and it’s usually the answer we give ourselves when we’re all out of answers.
So why are diabetes jokes so distressing?
From day one of my son’s diagnosis, I realised that there would be an aspect to T1D that would be out of our physical control. I didn’t know that one of the worst side effects we would have to contend with would be public perception, ignorance, stigma, misconceptions and myths. I would love to say that years on, that side effect was beginning to improve. But sadly, I can’t.
As a parent I have had people ask me if I fed too much sugar to my child. People have remarked to him that he is not fat, so he shouldn’t be diabetic. I’ve seen comments on social media in response to sensationalist news articles claiming that horrible parents feeding their kids sh*t has caused them to get diabetes. My son once thanked a group of people who were hosting a bake sale to raise money for a T1D non-profit organisation. While he was there, he had a woman shout in his face that they shouldn’t be selling cakes for a diabetes charity.
The implication is that diabetes charities don’t deserve to benefit from fundraisers because diabetics brought their illness on themselves. Children learn from their parents, they learn from what they hear and see influential people say. They hear their parents say “don’t eat too much candy or you’ll get diabetes”. And so the myth perpetuates, along with a heavy dose of stigma. Parents are reading those jokes and as much as they think it’s no big deal, they sure as heck believe that diabetes is caused by sugar, and self-inflicted. You might argue that you don’t think that at all, but from all the comments you see on social media posts and what we overhear ourselves, you’re in the minority.
Why is diabetes stigma dangerous?
A lack of awareness around type 1 diabetes is what has led to over 40% of all new cases of T1D being missed until the person has reached the life-threatening complication of diabetic ketoacidosis (DKA). This is partly because no one (including many doctors) believes a thin healthy child or adult could have diabetes. I have personally sat down and spoken to a university professor who lost her 27 year old brother to undiagnosed T1D. People losing their lives is why I fight for awareness. It is unacceptable that this is still happening in 2019.
You may be one of the few who understands the difference between type 1 and type 2 diabetes, and who knows that for type 1 sufferers jokes are painful. But here’s why it’s also not okay to joke about type 2: not all type 2 is preventable either. While some may have T2D due to lifestyle and other factors, genetics is the biggest risk factor. Some people may have had another medical condition that led to diabetes. It’s not fair to stigmatise them either. Diabetes isn’t about eating sugar. It is way more complicated than that. I know that some people living with T2D don’t always receive the best care or the best advice. More needs to be done to support them. After all, that person who might need support later on could well be you. We don’t judge people with lung cancer who have never smoked in their lives; and most of us don’t judge people with lung cancer who have smoked. No one jokes about cancer. Instead they have empathy. Empathy is largely missing when it comes to the word diabetes, and yet it’s the one thing sufferers need from the world.
Now I’m getting to the part which spurred me on to write this article. Diabetes jokes……
- Diabetes on a plate – oh those three doughnuts are so, so funny
- 24 candy bars what does Bob have = diabetes
- Share your photo of sweet treat on Instagram; hashtag #diabetes, etc.
The above are just some of the very popular ‘jokes’ that go around all the time. These jokes are based on the stereotype that people with diabetes caused their condition themselves & are lazy and overweight. It adds to the stigma I have already talked about. It leads to a vicious circle of misinformation. It means that children and adults are dying because they don’t know the seriousness of their symptoms.
Would you joke about these illnesses?
Once upon a time we all probably laughed at, or at the very least blamed sufferers for the following conditions:
- Cerebral Palsy – it doesn’t mean you’re stupid
- Lung cancer – not only caused by smoking
- HIV – not necessarily promiscuous or a drug addict
- ADHD isn’t about bad behaviour
- Mental health problems are not a sign of weakness
- Disabled people – and the judgement given to people with invisible disabilities
- Coeliac disease is not a fad diet, and food allergies sometimes kill
If we can understand and learn about these conditions, why not diabetes?
It’s all so predictable. A celebrity, tv show, or movie, will include one of these ‘jokes’ or tweet a photo. The Type 1 Diabetes online community reacts. If the person who made the joke apologizes, the next phase is the inevitable backlash. The following are comments made on The Today Show’s facebook page:
- “Do people just sit and wonder what they can be offended of next?”
- “I am so tired of this generation of wusses. Get over it” Those are just two of the ‘nicer’ comments.
- “Omg. GROW A PAIR you sissy f#!(ers”.
Who are you hurting?
First of all I’d like to address who the sissy f#!(ers are:
- We are mothers and fathers. Our children might be babies, toddlers, young kids, tweens, teens, or may now be adults.
- They are people that live with diabetes, and will live with T1D for the rest of their lives.
- They are people who may be newly diagnosed, or have lived with for 50 years, who say it still hurts to have their condition reduced to a joke.
- They are parents who are sitting in the hospital watching their child fight for their life.
- They are parents or adults who are in hospital learning to inject insulin multiple times per day, forever.
- They are parents, partners or people with diabetes who get up multiple times in the night to treat a low or high blood sugar.
- They are parents or family members that have lost a loved one due to a delayed diagnosis of T1D.
- They may be dealing with the very serious complications of diabetes. They might be dealing with mental health issues. Living with a chronic condition is not easy.
- They are teens and young adults that maybe dealing with diabulimia.
- They might be families or individuals choosing to dangerously risk their life by rationing insulin (in the USA) because the cost of insulin is so high (insulin manufacturers have been able to take advantage of public disinterest, but getting away for too long at raising the cost of insulin to the point it is now approx $300 a vial).
They are not wusses, snowflakes or sissy f#!(ers. They are heartbroken, they feel guilt, they are brave, they are warriors, they are heroes. They are advocates for their cause. Not because they want to be, but they have to be. T1D is invisible and sadly awareness is too.
The stigma of diabetes isn’t in proportion
Think about this for a moment: People with cancer are universally loved and supported; People with diabetes are not loved, they are laughed at. Less than one week after I saw the comments on The Today Show post, there was outrage over comments made by a State Representative when she was caught on video describing a miscarriage as ‘just some mess on a napkin’. If you take the time to read the public comments on diabetes vs miscarriage, you will see a stark contrast in how the public responded. We judge those living with diabetes, while we support those who’ve experienced miscarriage. It highlighted how different issues are seen or understood.
We don’t expect people to ‘get’ what we as families or individuals go through. What I really hope is that you can take the time to understand what we are saying. And to believe us. Because until all people with diabetes are not viewed as sugar-guzzling, lazy, obese individuals that caused their own condition and are costing the health services too much money, we will always suffer the pain of ignorance.
Instead of questioning why a celebrity apologizes for what he or she said, how about you embrace that apology and say thanks for listening to the people that are affected. Oh and in case you think we don’t have a sense of humour, we do. We just hope that the diabetes jokes we share with each other, are ones that you won’t ever get.”
Some final words
I live with Carolyn’s frustrations every day, and with her anger every time a thoughtless comment is made. I’ve learned to keep it to myself most of the time – after all, why would anyone understand a condition they have no experience of? Where I really start to struggle is when I correct a misconception, only to be told I’m wrong. I’m not wrong; I’m the person living with it. Always believe the people who live with the things you don’t. And if they say your words hurt, trust them, and change.
Diabetes jokes you can laugh at
And if you’ve got this far, here’s some total diabetes light relief for you. You will love comedian Ed Gamble, whether you’re diabetic or not – here’s his hilarious take on diabetes, that makes even diabetics laugh.
Carolyn Boardman is a type 1 diabetes mum and campaigner for awareness of the condition. She works hard to raise awareness of what type 1 diabetes is, because every single time a health-related ‘joke’ blows up, society takes another step backwards. We need to stop this backward trend that is not helpful to anyone.