Diabetes Awareness Week – Type 1 Diabetes Truths

This week is Diabetes Awareness Week, and in honour of that my post today is a little list of things people say, ask or seem to think about Type 1 Diabetes, that let’s just say aren’t really accurate, and the corresponding truth.

Type 1 Diabetes Truths

These are all things that have been said to me or to some of the fabulous and supportive parents in the Parents of Children with Type 1 Diabetes in the UK group on Facebook.

“Oh it’s just Diabetes it could be worse couldn’t it?”

I think this is the one that frustrates a lot of Type 1 parents the most, as Type 1 Diabetes really isn’t a ‘just’ kind of condition. Yes there are a lot worse things that my son could have but let’s put this into perspective:

In the almost 6 years Fin has had Type 1 he has endured;

  • Over 9000 injections
  • Over 18,000 finger prick blood tests
  • Annual blood tests because he is more likely to develop other conditions
  • Being woken in the middle of the night at least once a fortnight to eat food he really doesn’t want, but needs to stop him becoming very ill from low blood glucose through the night
  • At least 6 hospital stays when a sickness bug has led to his blood glucose being too low for him to safely stay at home – every stay involves a cannula in a hand for a drip, or just in case he ends up needing one
  • Having to sit and watch his friends play because his blood glucose is too low for him to join in
  • Various skin and other infections that Type 1 makes him more prone to and more.

As I said Type 1 Diabetes is really not a ‘just’ by any imagination.

“That means he can’t eat sugar doesn’t it?”

If only it was that simple! There are times when Fin desperately needs something sugary for a boost to stop his blood glucose levels dropping. He also eats the same as everyone else, he just has to space out sugary treats more and can’t randomly snack whenever he wants to.

“He’ll grow out of it won’t he?”

I’m afraid he will never grow out of Type 1 Diabetes, once you have it, it’s for life. This is why I can’t walk past any Diabetes collection tin without putting something in, even if it’s change I actually need for paying for the car park!

The only way Fin will ever not have Type 1 Diabetes, is if they finally find a cure, and unfortunately that’s an expensive task and one that’s likely to take a lot of years, if it ever happens. We have hope though.

This is one of the ones that get to me the most though I have to say. When he was younger I’d worry they would give him false hope, and now he’s older he doesn’t need reminding that his condition is for life by my having to correct people.

“He doesn’t look fat though”

You’re right my son is far from fat, and in fact was so ill at diagnosis he had lost a dangerous amount of weight, although he was never ‘fat’ in the first place. Type 1 Diabetes is not caused by being overweight and it’s not caused by an unhealthy lifestyle, Fin and I did nothing to cause him to become Type 1 and it’s pretty offensive for people to suggest otherwise.

This misconception about people with Diabetes being fat comes from people’s confusion over the different types of Diabetes, but even Type 2 Diabetes isn’t always caused by an unhealthy lifestyle. I blame the press for a lot of these misconceptions I have to say.

“Is it the bad kind of Diabetes?”

This from Sarah on Facebook, although I’ve heard this one a lot of times. Funnily enough there isn’t a ‘good’ type of Diabetes! Yes type 2 can often be controlled by diet and tablets, but they are still very much at risk of complications the same as people with Type 1 Diabetes, and no one ever said ‘I wish I was Diabetic’.

“Can I catch Diabetes?”

This counts for all types of Diabetes, it is not contagious! You can not catch any form of Diabetes from another person! Someone on Facebook was even accused of giving her child Type 1 Diabetes by passing it on whilst breast-feeding her.

“Don’t injections hurt?”

Direct quote from a Type 1 group on Facebook “No, it’s like being licked by kittens”. That is actually a joke by the way, yes injections hurt, but luckily as a coping mechanism Fin’s pain threshold is a lot better than it was when he first started being injected. However piercing your skin with a small piece of metal will always hurt.

“Ooh I couldn’t do that, arghh I can’t even watch”

This is one of those comments that I really want people to realise is not okay to say in front of a Type 1 child, they don’t want to be made to look different, they don’t want a lot of attention drawn to the fact they are injecting or testing their finger. They want you to treat it like the normal part of their lives that it is!

It is not disgusting or gross or any other negative¬†thing that pops out of people’s mouths without thinking, it’s necessary and keeping my son alive, therefore I really don’t want him embarrassed out of doing it in public.

Rebecca on Facebook said that her teenage daughter had someone tell her “can you not do that in front of me please, it makes me feel sick”, I actually dare someone to say that to my child in front of me…

“Oh I saw a cure for Type 1 the other day”

Or copying in Type 1 parents to posts on social media about a ‘cure’, apparently according to another Facebook Mum some seem to think Cucumber has magical healing powers…Honestly we don’t want our children to be coping with Type 1, so if there was a cure we’d know about it, and we’d use it.

There is NO cure currently, and when there hopefully is, I’ll wait and let the Doctors tell me about it, not some random forwarded tweet from someone’s Auntie’s cousins friend who heard about a cure from someone who is also offering to cure cancer with nothing more than a feather and a grapefruit (please note I am not advocating feathers and grapefruit for any health condition!).

“Did he get it from eating too much sugar?”

No he did not. As I said above, he did nothing to deserve Type 1 and I did nothing to give Type 1 to him. I’m not actually a bad Mum, and asking this question implies the asker thinks I am.

“Oh I couldn’t inject my child”

This is another one from Facebook that actually beggars belief. Insulin injections (or pumps) keep people with Type 1 Diabetes alive, and I am pretty sure that the majority of parents would do anything to keep their child alive. You do what you have to for your child.

“I guess she has a worse form of Diabetes that the other children at school, as she’s on a pump”

This is from Sharon in the Facebook group. Obviously if you don;t have diabetes yourself or know someone who does, then you may not know the ins and outs of the different ways of receiving insulin.

Basically a pump is just a different way of receiving insulin, I won’t go into detail on how because for a start I’m no expert as my son doesn’t use one, but it certainly has nothing to do with having a different or ‘worse’ type. All types aren’t much fun by the way.

“Do you buy Diabetic sweets?”

Or people giving them Diabetic chocolate as a gift. Laura on Facebook cracked me up with her response to the question about whether she bought Diabetic sweets, “Her pancreas is dead, not her taste buds!”

Not only that, but too many of these supposed Diabetic foods with their artificial sweeteners actually give you diarrhoea, which believe me is the last thing someone with Diabetes ever needs. The only time Fin has had diarrhoea since he was diagnosed, he ended up in hospital on a drip.

These are just a selection of misconceptions, and if any other people with Type 1 Diabetes or their parents would like to comment below with any I’ve missed, or with which ones of these you have heard then feel free.

This post is not to ‘have a go’ at those of you who have said these things in the past, but is merely to try to tell you some Type 1 Diabetes Truths so that you may avoid accidentally insulting someone, and hopefully understand a little better what people with Type 1 Diabetes go through.

Stevie x

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33 Comments

  1. Jane Willis
    15 June 2015 / 8:38 pm

    So many of your questions and answers apply to type 2 too. And there are the people who say “You should/shouldn’t be eating that, my gran was diabetic and she wasn’t allowed to” as if medical thinking had made no progress in the last 40 years.

    I’m a bit shocked that I wasn’t aware that it is Diabetes awareness week, especially as I follow Diabetes UK on various social media and have been to see my GP today and there was nothing in the surgery or pharmacy.

    • 15 June 2015 / 8:50 pm

      I know Jane, Diabetes awareness week seems to pass unnoticed unless there’s something in the press about unhealthy lifestyles, then they mention it! I wish I’d seen more about Type 1 Diabetes before my son was diagnosed, he may have got diagnosed a lot earlier then and not been in such a dangerous state. I’m planning to try and a get a signs and symptoms post done as soon as possible.

      Stevie x

    • Justin Wallace
      16 June 2015 / 10:00 am

      Condolences and congratulations in equal measure for navigating six years of Type 1. I worked with children who had this condition for almost five years, and I have to say it always made me feel so proud to see how well they dealt with all that was asked of them. I know that Type 2 is no picnic as well. They both require a delicate daily balancing act which can’t be anything but trying. I hope that as the correct information on the condition is shared, you will deal with fewer insensitive statements. Thank you for taking the time to write this down.

      • 16 June 2015 / 12:34 pm

        Thank you Justin, he does make me very proud with how he copes with it all and doesn’t let it stop him from doing anything.

        Stevie :)

  2. 15 June 2015 / 9:22 pm

    I don’t have any experience with diabetes (thankfully of course) my sister in law has developed type 2 and I believe my mother in law has type 1 also yet I know very very little about this condition and I think it now effects so many more people we need to educate ourselves, could you perhaps write about what one could do of faced in a situation for eg my mother in law has a few times lost track of time I guess when she was meant to give herself an injection and she was found in her bathroom almost passed out. What if someone has the condition but isn’t carrying anything with them? Of course I know you’d call the emergent services but I hope you can see where I’m going with this! It’s great to read personal accounts not just fact fact fact from an NHS website (which of course is very useful don’t get me wrong!)
    I also didn’t know it was the awareness week for it, there are so many days and weeks now they collide into one and lots of very important issues go under the radar, thankfully people like yourself help to put it out there x

    • 15 June 2015 / 9:27 pm

      Thanks Hannah lovely, and I’m going to try and get more Diabetes posts done in the next couple of weeks and will definitely add that one to my list! As for the almost passing out in the bathroom it’s more likely that would be from low blood levels from missing food or not having the correct insulin for food she has eaten hon. Too much insulin can lead to lows and when you’re low (hypo) according to my best friend who has Type 1 it’s like you know you are low and should do something about it and you keep telling yourself that, but your brain can’t operate your body!

      Stevie xx

  3. 15 June 2015 / 9:34 pm

    A really interesting post, Stevie. I don’t know much about Diabetes, but a friend at uni was diabetic and I often saw her doing a finger prick test, she was discreet about it that most people probably wouldn’t have noticed, but now I think about it this was probably as it was something she always did and never wanted to bring attention to. Some of the things people say are clearly a sign that we need a bit more education on diabetes, especially if people think you have to have an unhealthy lifestyle to be Diabetic! xx

    • 15 June 2015 / 9:52 pm

      Thanks Jenny, I really knew hardly anything before Fin was diagnosed, despite having a couple of friends with it! I never realised quite how serious it is, or how misunderstood. Most people mean well with the things they come out with and so these days I don’t go into rant mode, I just try to help to re-educate them…I suspect some would prefer the rant ;)

      Stevie xx

  4. 15 June 2015 / 11:12 pm

    My son was diagnosed at 10 and now he is 24. He still lives with me. People tell me all the time that he should move out. They just don’t get that he can’t live alone and even if he got a room mate, that friend would have to take on a huge responsibility. Thank you for informing people with your post.

    • 16 June 2015 / 7:41 pm

      I can imagine when Fin does move out of home I’ll be nervously texting him and driving him mad all the time ;) We’re Mums it’s our job to worry about them, and Type 1 really does make it natural for us to worry more.
      Stevie x

  5. Marion Stephenson
    16 June 2015 / 5:16 pm

    All of this So true.
    I just happened to spot a pack of Sweets today that stated ‘suitable for diabetics’ that really bugs me and spreads further ignorance. After inspecting the nutrition info I saw they had 98g per 100 of carbs!! Absolutely no different to the full sugar version.
    While they may be better for type 2 they are of no benefit for type 1’s.

    • 16 June 2015 / 7:37 pm

      A lot of these sweets etc intended for Diabetics seem to be full of artificial sweeteners and chemicals, and have so many ingredients I’d be put off trying them at all even if I didn’t already know the effect they can have on the stomach!

      Stevie x

  6. Anand
    16 June 2015 / 7:22 pm

    Thanks for all the information’s about type 1 diabetes

  7. Sarah D
    16 June 2015 / 11:21 pm

    Congratulations on managing your sons diabetes so well. I was diagnosed with type 1 diabetes 30 years ago – I never let my condition take over my life and just see it as a part of my day to day life. Thankfully my parents taught me that if someone complains about injecting or testing my blood in public to tell them not to look then! Keep up the good work! X

    • 17 June 2015 / 12:00 am

      Thank you Sarah, we try our best! I love hearing from adults with Type 1 who have had it since they were children and who haven’t let it hold them back at all, and are positive like yourself. It gives me a lot of hope for the future :)

      Stevie x

  8. Sam
    17 June 2015 / 5:10 pm

    I have two girls and both are type 1. I’ve always said that having diabetes is nothing to be ashamed of so don’t hide away to do tests or injections. If people don’t like to see them injecting then look away. I’m very proud with the way they have both coped with it all and no matter how old they get I will alway worry.

    • 18 June 2015 / 11:48 am

      Type 1 children are extremely brave and put up with a lot that many adults would struggle to cope with, it’s no wonder we’re so proud of them! You’ve definitely given your children the right attitude, my son struggles a little with people watching him inject or test, as he desperately wants to be in his words ‘normal’ but I’ve always tried to tell him there is nothing to be ashamed of and people are probably just thinking how brave he is…whilst I glare at them ;)

      Stevie x

  9. Gemma
    17 June 2015 / 11:37 pm

    Being a type 1 diabetic for almost 30 years, I under stand how hard it can be for young children to be diagnosed with it. I have had my ups and downs with it but thankfully I have had my family and friends around me to get me through the bad parts. My blood sugars are at the levels they should be but at times I get caught of guard with them. This can’t be helped, any diabetic will tell you this. Being a type 1 diabetic has never stopped me doing what i want to do and when I want to do it, I exercise on a regular basis and maintain a healthy diet. Life as a diabetic still allows me to travel the world and enjoy yourself.

    • 18 June 2015 / 11:52 am

      I love hearing from Type 1 adults who haven’t let Type 1 get in their way, very inspiring for us as a family and especially my son! I try not to let it stop my son doing anything, even if it means a lot of stress and extra calculations for me ;)

      Stevie x

  10. Annie
    18 June 2015 / 10:33 pm

    Hi, I’m 55 and have only just been diagnosed with Type 1 diabetes. No reason at all why I should have it so late in life but apparently my pancreas has shut down and is no longer producing insulin. I inject twice a day and check my glucose and sugar levels 7 times a day, in particular prior to driving. Im coping okay but feel I am feeding the insulin as eat far more than I used to although my weight is still the same as allways 9 and half stone. Yes, it was scary at first but now its just a way of life.

    • 18 June 2015 / 11:11 pm

      Hi Annie, it’s definitely not always children or teens who get diagnosed although it’s less common as you get older, as you yourself know. One of my friends was diagnosed in her 40’s and I now it can take a bit of getting used. My son’s appetite is huge, and he has 5 injections a day, they do get less painful as time goes on though as do the finger pricks. I’m not sure if it’s too do with skin desensitising or a coping mechanism, but we’re very grateful for it. Really hope you get on well with control etc, it really is something no one deserves to have, but it really does bring out a real strength in people.
      Stevie x

  11. lavinia
    20 June 2015 / 8:12 am

    Well done on raising awareness. You only ever hear about diabetes in the media in relation to being over weight. My friend was shocked when she developed gestational diabetes, she had never even heard of it!

    • 20 June 2015 / 8:48 am

      Thanks Lavinia, sadly very true!

      Stevie x

  12. 20 June 2015 / 9:21 pm

    If truth be told I’ve probably said some of these at one point or other only because I wasn’t aware of what it was. Thanks for sharing about Fin’s diabetes.

    (But just out of curiosity, has there been something in the news this week about a possible cure for Type 1 Diabetes? Or am I being ignorant again? I only heard the headline being mentioned on the radio)

    • 20 June 2015 / 10:38 pm

      Most people have lovely, and some of them are understandable….some definitely not so ;) I did hear something as well, but it’s nothing definite and more something that they can possibly research further…every year or so there’s a supposed possible ‘cure’ or advancement which could mean something, but I try to ignore it as it saves disappointment and even if it’s a slight possible this would be years away. I always have hope though really

      Stevie x

  13. 23 June 2015 / 12:41 pm

    My heart broke this Christmas when a well-meaning family member gave my 10 year old daughter diabetic biscuits and chocolate for Christmas. It made a happy morning tinged with sadness. I swear these things should be taken off the shelves – they’re good for no-one!

    • 23 June 2015 / 6:10 pm

      I feel the same Helen, especially when you look at the ingredients of some of these supposedly ‘Diabetic’ foods, anything with an ingredients list so long and with so many ingredients I couldn’t hazard a guess at, can’t be good for you! I have to remind myself sometimes that people are being well meaning and not bite their heads off for some of the stuff they say….not always easy!

      Stevie x

  14. 14 November 2015 / 5:47 pm

    Thank you so much for sharing your story. I can only imagine how hard it must have been to live through and to write, but this information could save lives. Thank goodness your little man pulled through. Xx

    • 14 November 2015 / 8:05 pm

      Thank you for the kind comments, it wasn’t easy to write and it was a very hard time, but I am so proud of how he copes with everything and grateful every day that we had the outcome that we did and he’s still here :)

      Stevie xx

  15. Babbarene
    25 February 2016 / 11:16 pm

    My daughter was diagnosed 19 years ago with type 1 at the age of 2 1/2. You have no idea how hard it is to deal with such a young child as they have no comprehension of what is happening to them. At first she used to scream, fight and squirm with all her might when she saw me getting ready to do a finger prick. In those days I had to forcibly hold her still while we waited for a big enough blob of blood to form on the end of her finger, which then had to be dropped onto the test strip, you were not allowed to actually touch it. Then came the injections. The smallest needles we had were 12mm long. The muscles on her little arms were not big enough to take them. Then you have the battles over food and eating, because they soon learn they have you over a barrel where mealtimes are concerned. Once again they do not understand the consequences of their actions, so they just think it is a good way to get their own way all the time. You have all the trauma of this going on every single day – and as you say – you then have to put up with all the misconceptions of most of the people you meet. It can be very stressful indeed.
    Yet I counted myself lucky in many ways. My Mother had late onset (type 2) for the last couple of years of her life, so I was accustomed to reading lots of labels, and a friend of mine who had type 1 when my daughter was diagnosed insisted that: ‘She will be fine, look at me, I’m fine, so will she be!’ I dread to think of how I might not have coped without the help and experience of those two. There are some who help so much, I hope you can help others as they helped me. My daughter is 21 and reckons she could write a book about the awful things people say to her about the condition. Her attitude is ‘If you don’t like it, you don’t have to look and if you think my condition is not so bad, would you like to swap with me?

  16. Richard
    25 November 2016 / 8:54 am

    As well as cucumber T1D can, apparently, be cured with cinnamon. I’ll be blowed! I’ll write to the Lancet immediately, professional researchers have missed something so easy! Over the years I’ve been told, pointed to or met people who know someone who knows someone who has been “cured” by so many off the wall foods, diets or avoiding certain things. If it was that easy…

    • 25 November 2016 / 9:37 am

      If only hey?! I get told all the time of ‘cures’ often from well-meaning people who believe spoof news sites and I always try to patiently explain why they aren’t real. As for the cinnamon thing, someone I know went to the US on holiday and when out for a meal the waitress offered them some cinnamon so that their Type 1 child wouldn;t have to inject … at times like that you so hope that the parents of Type 1 children know enough to know not to listen to things like that.

      My biggest ambition is to be able to write about an actual cure for Type 1.

      Stevie