‘Diabetes’ myths/perceptions/stigma, featuring ‘Getting diabetes wrong’ Coleen Nolan and Jamie Oliver

If you’re a Type 1 family, you’ll know what’s coming re Coleen Nolan and Jamie Oliver.  If you’re a Type 1 family, you might be of the view to just ‘let it go’.  However, my character trait is to make sure if something is wrong, it needs to be fixed.

When I first moved to the US over 13 years ago, I was mortified that the deep sea fish, Orange Roughy, was commonly sold here in all the grocery stores. Before I had left the UK, I watched the BBC’s wonderful series The Blue Planet. Most importantly, I remember the final episode which touched on the devastating consequences of some fishing practices. So I was mortified to discover Orange Roughy was being sold here. Even Whole Foods were selling it. I didn’t really get very far, but I’d like to think I planted a seed in some minds and when several years later, it was no longer available here, I might just have helped in a very small way.

So cue to the year 2015. We’re now 2 years and 3 months post Matt’s T1D diagnosis.  Awareness of T1D has really not changed at all, unless you’re one of my friends who are very well Type 1 Aware now 🙂  There are still negative portrayals of diabetes in the media. Such as this one courtesy of The Sun newspaper…….

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So what type of diabetes are we talking about? The Sun has just lumped all types of diabetes as one. They are telling their readers that everyone with diabetes is a burden on the NHS. That those with diabetes are obese, has a poor diet and does little exercise. It fails to mention that they are referring to Type 2 Diabetes.  It fails to mention that Type 2 is strongly genetic and that not everyone with Type 2 is obese, eats poorly or is a couch potato. There are many who are Type 2 that are slim, very fit but just happen to have family genetics against them. By failing to mention Type 2, they are also misrepresenting the other types of diabetes, such as Type 1 which has nothing to do with lifestyle choices, but is an autoimmune disease. Their readers will hear the word diabetes mentioned and assume all types are the same.

Then we have Jamie Oliver, who I have always admired.  I love his quest for better school meals for children. His advocacy in this area is admirable. However, what Mr Oliver doesn’t appreciate, is that Type 1 parents are also advocates. We are advocating for the perpetuating myths that surround Type 1. So when he was recently in California and posed in this photo…

jamie

he was obviously met with a barrage of complaints from Type 1 families. Mr Oliver was on a campaign for access to fresh drinking water in Californian schools, I believe. Which again is a worthy cause.  However, for some reason he ended up posing in front of this giant can of coke named Cokezilla with the word Diabetes, and holding sachets of sugar and a bottle of coke. Again what does that tell the public? All types of diabetes are the same. We all know there is nothing nutritionally good about coke. However, sometimes it helps people with Type 1 if they’re having a severe low blood sugar. Still,  Mr Oliver might like to look some of his high carbohydrates recipes and realize that those recipes have the same affect on blood sugar as that can of coke, and in some cases are worse. So diabetes is not quite as straight forward as he’d like us to believe.

Now he did issue an apology and was supposed to be looking into it. However, a day later he ended up retweeting the same photo that The California Endowment posted.  I guess he didn’t look too hard into the facts, or make any effort to understand why the issue.

I made a call to The California Endowment just over 2 weeks ago.  I was put through to Annie in communications.  I have yet to hear back from Annie.  I’ll be sure to follow up with her.

Then last week, just when we think it couldn’t get any worse, Coleen Nolan on the tv chat show, Loose Women, comes out with this:

The topic of the conversation had nothing to do with diabetes. But was about incentives to mothers who smoked during pregnancy to get them to stop. I have no quarrel with discussing those types of lifestyle issues that harm our unborn children.  However, when you say on national television “What about people who eat too much during pregnancy? The kids are born with diabetes. Are we going to pay them to stop eating?” Before that her reference was to children who were born with terrible disabilities because their mother drank in pregnancy.

She flat out told everyone her opinion was that children are born with diabetes because their mothers ate too much during their pregnancy. Unbelievable. Of the children that have diabetes, 97% of them have Type 1 diabetes.  The babies that are actually born with diabetes, thankfully fall into the very rare category of Neonatal Diabetes. There is a very small percentage of children that do have Type 2. That very small percentage with Type 2 maybe related to their diet, lack of exercise, being overweight and family genetics during childhood. But don’t pick of every single child with Neonatal Diabetes or Type 1 Diabetes for which their condition was not their mothers fault.  One fabulous T1 Mummy has this as her response on  her blog. She says what every T1 Mummy/Mommy feels and wants to say. Please go read this:

http://www.actuallymummy.co.uk/2015/01/29/dear-coleen-nolan-diabetes-not-fault/

Obviously after every Type 1 Mum was accused of causing her child’s diabetes, there was a flurry of complaints to Loose Women on their Facebook and twitter pages. This ‘forced’ a very reluctant Loose Women to make a very condescending apology on their Facebook page the following day. I was going to copy and paste it in here along with some of the comments from non-D families. However, it appears that Loose Women have removed the post completely. In Loose Women’s ‘apology’ the stated that Coleen had said that women who over ate in their pregnancies could risk their child going on to develop diabetes later in life.  Ummmmmm no, she didn’t say that at all. She specifically said ‘born with diabetes’. They also said that they would be sure in future to use the correct terminology that those with Type 1 demanded.  Well that’s a bit rude really. It’s not really terminology. It’s an actual autoimmune disease. It’s a different disease to Type 2.

They did also air this apology which was a little bit better than the Facebook one, however it appears what Coleen says and means are two entirely different things:

There are 2 things that really irk me when it comes to these media perceptions. I’ll move onto the most important one at the end.

The first is the response from non-D families. Most will tell us to stop  being overly sensitive. “Get over it, it’s no big deal”. “Could be worse”. Etc etc etc.  At what point did our society become so lacking in empathy/sympathy?  Probably about the time the media started to portray diabetes in such a negative manner.  What will happen when society finally catches on that 40% of cancers are lifestyle related?

http://snip.ly/xdXF#http://www.bbc.co.uk/news/health-30602994#sa-ns_mchannel=rss&ns_source=PublicRSS20-sa

Will the unaffected public start to blame cancer patients or their families for their or their child’s cancer? I really hope not. Our children with T1D face potential psychological problems. They can become depressed. It is not fair for society to compound the stigma that they face.

The 2nd and most important reason I am irked by diabetes myths, relates to taking away much needed awareness of T1D. Whilst the general population continues to think that T1 diabetes is a self inflicted condition, it will prevent a timely diagnosis of T1D in a baby, or a child, or an adult. You might ask how can you possibly blame public misconceptions for that? Well whilst everyone is being told it comes down to eating the wrong foods, someone who has always diligently fed their child the ‘right’ food will not consider diabetes as being a cause of their sick child who is losing weight. It will be dismissed as a virus.  It maybe dismissed as a virus by that child’s own doctor. Delay means Diabetic Ketoacidosis which becomes a life threatening condition very quickly. My own ignorance of diabetes before my son was diagnosed, almost cost him his life.  If I had left it 1 more day before taking him to the doctors, he might not be here today.

So if I am being overly sensitive, it is because I will never forget the day my son was diagnosed and in intensive care. I will never forget my boy who had a needle phobia, having to get over this phobia within 24 hours because from now on his life would now forever include needles. I will never forget seeing him lying in a bad with tubes comes out of his arms, with doctors and nurses checking for brain damage. I will never forget just how close to dying he came. Seeing your child come so close to death will change you. It changed me to do whatever I could to help my son live with this disease and to help others in my community that recently had children diagnosed with T1D. It spurred me to become an advocate and to stand up to those that perpetuate myths about diabetes.  It is about time, these myths are dealt with once and for all.  There needs to be a serious documentary on the subject.  There needs to be proper guidelines set out to media outlets so that the same mistakes are not made over and over again.

As the fabulous blog by T1 Mummy Helen so eloquently explains – Help us to stop people believing that parents have caused their child’s diabetes. To stop people making lives harder with their assumptions – a diabetic’s life is hard enough already, without worrying about what other people think. You need to do this, because whilst people believe what you believed yesterday, they won’t support the organisations striving to find a cure for this dreadful disease, and my girl will have to live longer with this hell.

In my case, my boy will have to live longer with this hell.

On the off chance someone in the media ever reads this, there are many families who will happily open up their homes to you, to show you what Type 1 Diabetes is. My home is open to whoever wants to listen, learn and finally for once and for all, get that much needed awareness out there and put a stop to diabetes myths.

If you got this far reading, thanks so much.

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4 comments

  1. well written. Cannot imagine how frustrating this can be and I don’t have a Type 1 kiddo but their ignorance makes my blood boil!

  2. You make another really good point that I hadn’t really laboured on in my post. Even when people know it’s not our fault, and understand the difference, they still have the ‘get over it’ stance. They don’t realise how much hard work it is, they don’t understand why we work so hard at it, they do think we’re over-reacting, because they don’t know that our children could die – even now we have the diagnosis, they could still die, or be brain-damaged, if we don’t work as hard at it as we do. And we have our hands tied, because we can’t tell them We can’t tell them because we want them to continue to invite our children to playdates and sleepovers, and to treat them normally, so that with all the hardship they’re going through, at least they won’t have to worry about being an outcast. That has been one of the most frustrating things since our diagnosis. I play down the dangers all the time, so that she can be included in all her usual activities, but inside I’m screaming – don’t you realise how serious this is!? Don’t judge me for making you weigh every single thing she eats.
    Thank you for the link to my post. This condidion really does need so much education. I do hope we have contributed to that.

    1. The ‘get over it’ stance just floors me when I read some of the comments. I would never ever say that to anyone that had a child that had any type of disease or serious food allergy. Walk a mile in our shoes, then maybe you’ll understand. My boy’s diagnosis came at a time of him being of the age he could have more independence. He has only ever been invited over to one families home for sleepovers since diagnosis. All other invites stopped. I’ve had to do more volunteering at his school when there are any band events going on. It’s too much for the band directors to keep watch on him also. I wish I could just let him go without a worry like the other parents. In time, I will have to.

      I’m sorry T1D became a very unwelcome member of your family. But I’m not sorry that we got to have a fabulous advocate in the diabetes online community

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