In our three years living with Type 1 diabetes I’ve learned a fair bit about myself. Not just my capacity for complicated maths in the middle of the night after a bottle of Prosecco; nor my propensity for hurling my diabetic child into every potentially dangerous adventure, just to prove a point. No, my biggest lesson has been patience. My previously unsuspected ability to smile and nod in the face of extreme provocation. And before we go any further, let me say that I have made at least three of these mistakes myself, in a previous life. So this is not judgement. This is merely a checklist of things to avoid blurting out, in your hunt for something appropriate to say to a diabetic.
Things not to say to a diabetic
1. It’s not the end of the world. It really is. It’s the end of the world as they know it, assuming they didn’t previously stick needles in their fingers ten times a day, weigh everything they ate like they were on some extreme version of The Biggest Loser, and set their alarms in the night to make sure they were still alive. Yes, they will survive (probably), they haven’t lost a leg – yet – and they can still be anything they want to be in life. (Except an airline pilot – if that was their dream they’re screwed). But it’s still a huge deal. And it feels just like the end of the world.
2. At least it’s not cancer. No, there is that. And cancer is awful, and I wouldn’t wish it on anyone. But I wouldn’t wish diabetes on anyone. I’ve experienced both in my family, and both have felt equally as distressing. Cancer can kill; so can diabetes. Cancer can sometimes be cured. Diabetes can’t. Consoling someone with a serious lifelong condition that it could have been cancer is like telling them their house has burned down, but hey, at least the shed is still upright.
3. You shouldn’t eat that. A diabetic generally knows the carbohydrate content of everything he eats. Like you on a pre-wedding Slimming World mission, he can accurately quote the numbers and stats in pretty much everything he eats, and the likely effect it will have on his body. He’s already fed up about life, without someone on the outside telling him off for craving a cupcake.
4. When will it be stable? The unfortunate answer to that is – never. If by ‘stable’ you mean no hypos, never having to think about it during the night, and taking a set daily dose of insulin to keep it under control. Type 1 diabetes is like being on a bucking bronco. It has to be ridden, the whole time you’re on it; you’re going to fall off lots, and you have to keep getting back on, even when when you’d rather have a beer and watch from the sidelines.
5. What did you eat???!! (Shocked face). A blood sugar of 27 is well nasty. It’s like the worst hangover you’ve ever had. And you can’t even sleep it off. Surprisingly, it’s not usually going to be down to something you ate. Diabetics know how crap they feel when they omit insulin doses, so most of them don’t do it. A high blood sugar is more likely to be caused by an insulin pump failure, insulin that’s gone off in the heat or the cold, or a virus. Yep, a common cold can make you look like you’ve been mainlining candy floss.
6. Did you eat too many sweets? No. Just no. Type 1 diabetes is not caused by lifestyle factors. Bizarrely, my type 1 daughter eats more sweets now she’s diabetic than she ever did before.
7. Ohhh my gran has that. She’s fine. Good. Great news for your gran. We’re really pleased for her. It’s probably type 2, right? Nothing like what we’re dealing with. Plus we got it when we were nine, not 69. We have a lifetime to live with it. It’s a bit depressing.
8. My dog has it. I know exactly what you’re going through. No you don’t. Your dog eats one set meal a day. He’s never been a teenager. He doesn’t have a bunch of dog mates who like to eat Haribo on the way to school, and Domino’s every Friday. He doesn’t drink alcohol, or fancy Coco Pops on a Saturday morning. He’s probably not going to get pregnant, or fancy inter-railing round Europe. You get my point.
9. At least it’s not life-threatening. It so is. Insulin is a lethal drug, if overdosed. Doctors don’t tell you how much to take and then send you away till next year’s review. You decide what to take, and the dose alters every time you take it. Doctors will teach you how to make the safest possible decisions, but at the end of the day, the buck stops with you. A lot of people making this decision are children. Tell me another condition where a child is allowed to self medicate a potentially fatal medication. Oh, and by the way – if you don’t take enough insulin, guess what? You could die.
10. I could never take all those injections. You could. If the alternative was dying.
So what should you say? “I’m so sorry, that sounds really tough. Tell me how it works. Tell me how I can help.” All really good opening gambits when someone tells you they have diabetes. Actually, my guess is that these are a pretty good bet with any bad news a friend might tell you.
We got the cancer one 2 days after dx from a well meaning parent at school, never forgotten it. Had most of the others too…and you either let it slide or educate depending on mood, I find.
I’m in the let it slide camp these days, but I very much struggled to begin with, and was a bit passive aggressive I’m afraid. Without so much of the passive! It just pushed me over the edge. Mind you, I do still feel very frustrated, even when I’m smiling and nodding. That said, I made the cancer mistake myself with a friend whose daughter was diagnosed a few years before Maddie, so I do understand it. I was mortified once I realised and she was the first person I called when we left hospital, to apologise.
One guy called me as “Unhealthy” and I don’t know why I was so enraged. He was showing off that he is having perfect health and all others are idiots and unhealthy.
I have learnt after years of being a diabetic mum that when meeting someone who has a child with a condition I don’t know too much about to simply say..
Tell me more about this, how do you treat it, how can I help.
Instead of reassurance with a stupid comment that come from a well meant place.
And then I lift heavy shit to let my mind deal with the stupid comments after a night of no sleep.
Yep. There’s got to be some upside to this learning curve we’ve been on. We are absolutely the best possible friends 🙂
You’ve put into words every every single comeback I wish I’d made. I’m definitely in the ‘smile and nod’ camp whilst inwardly seething ‘if only you knew…’
Worryingly familiar with the complex maths after a bottle of Prosecco scenario too ?
Ha! I know. The amount of insulin decisions you have to make in the middle of the night is alarming. Touch wood I’ve not yet done anything too drastic. Though I do know of someone who dosed himself 6.2 units in the middle of the night instead of 2.6. That’s a scary thought!
Such fantastic tip and advice. I can not imagine how you all live with Type One, but I do know that you have no alternative.
Sometimes I think that people do not think before they speak and I know I suffer from foot in mouth sometimes
Yes me too – you want so desperately to say something helpful, when really there isn’t anything you can say. Hence the mistakes
Both of my ex in-laws have diabetes and a few other family members. They all got it as adults. I don’t know anyone with type 1 diabetes so I can’t imagine how hard it must have been for you growing up. For anyone who says it isn’t life threatening though, they need to get educated because my sister’s dad died last year because of diabetes. It did eventually kill him. Granted he refused to take care of himself but the danger is there and her other half sister has diabetes that is pretty bad. She’s already lost two toes and has been hospitalized several times. My ex mother in law has also been hospitalized and she takes very good care of herself so to say it isn’t life threatening is ignorance. These are good tips though and something to keep in mind when around people who are suffering from this. Thanks for sharing!
Oh I’m so sorry to read this Michelle. It’s such a difficult condition to manage, and so relentless, that I don’t judge anyone who suffers complications, but it is terribly sad when they happen. Thank you for sharing your experience.
Some really good advice in this Helen, thanks. I can’t believe compare it to their dogs diabetes! When I was 16 my best friend was T1 and that helped me so much to understand. I remember being so scared as I was shown how to give her the life saving injection she might need if her blood sugar was too low and she passed out. Mich x
Oh how fab that you did this Mich, it is a scary looking injection I know. The thing I always remind people of is that you can’t hurt someone with it, and you could save a life. I’d really like Maddie’s friends to learn how to give it at some point, as I won’t always be there for her.
Really good advice. I am sure people are well-meaning in their reactions as they just do not understand the disease
No you’re right. We all have the best intentions, it’s just always difficult to know what to say.
It’s impossible to imagine how your life is affected by something unless you have lived through it. But your post provided a good insight for those who have not experienced this disease and also a good thing to say to someone going through this to show your empathy without being insensitive.
Thanks Nadine. The whole thing has taught me to be so much less judgemental of others, and I’m thankful for that. We can never understand something if we haven’t dealt with it ourselves, you’re right.
Great advice. I never actually realised the struggle that diabetics have but your post has opened my eyes to it. If you don’t understand something though you should really not try to pass any judgement. Sometime people just can’t help it though but awareness posts like this are needed.
Thanks Louise
I think a lot of people are so unaware of the differences between type 1 and type 2 diabetes that they don’t realise how serious it can be x
THAT is half the battle Rhian. The media mostly laughs at diabetes, so people don’t really take it seriously, or worse, judge you for it. But we’ve learned that even type 2 can have a genetic factor, and it’s not fully understood. I know a really fit marathon runner who has type 2 and takes insulin for it. Once you’re on insulin, no amount of lifestyle changes will cure you, and it’s a very risky medication.
This was so eye opening, and I definitely feel more aware of the impact of Type 1. Hopefully now I’ll be able to say something more constructive if it happens to someone I know
Thanks Zena. Everyone who understands even a little bit more is a win in my book.
So true! It’s so easy to say things without thinking about other people’s feelings. I am glad I read this as it will really help me support those in diabetes.
Dear Helen, thank you for your Blog.
I also live in St Albans as do my family. Our granddaughter Emily, almost 11, was diagnosed with diabetes1 May 2020. Under lockdown with all the problems that brings, BOOM! Diabetes 1.
Your Blog has been invaluable, encouraging and positive.
Emily’s brother Ben was born deaf and so we have had to live through that trauma and pain and here comes another unwanted dose of it!
Ben is 8 and you would not guess he’s deaf unless you saw his aids but a hell of a lot of commitment, especially by his mother, has enabled him to arrive at this point. In some ways overcoming deafness helps the parents because they know that things can get better once they get over the pain and shock.
I have the impression that you are are campaigner, working hard to improve the lives of children with diabetes 1. I thank you most sincerely on all counts for helping when help is wanted and needed. Your articles are invaluable.
Anna
Hi Anna, thank you so much for commenting. I’ve been thinking of all the people diagnosed in lockdown and how scary that must feel. Although actually, looking back I think it might have been good to have everyone at home in the early days – far less angst over how school might help, or what to do at Guides and ice skating practice. There’s plenty of time for all that once you’ve got your heads around the basics. I’m so sorry though – it really is an awful diagnosis. That said, there is a lot of hope, and it will get easier to cope with in time. It’s a horrible feeling at the beginning but you will get there. I’m so glad my blog posts have helped in some small way. That’s always the aim 🙂
Well Helen, you wrote the articles and we benefited enormously and for that I thank you again. It’s true to say the lock down has in many ways helped the parents to get into gear with a new life for Emily.
We are fortunate that our family’s neighbour is an award winning scientist researching how to improve the lives of those with Diabetes 1 by using technology and he is linked to this valuable site https://www.digibete.org/
Hi Anna, we absolutely love what Digibete are doing – totally happy to recommend them to my readers.