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My Facebook and Twitter feeds are full of diabetes awareness campaigns and it is only going to get busier in the next few days. World Diabetes Day is a global event, and around the world there is much going on to help get people talking and thinking about diabetes.
My favourite campaigns are those that strive to shoot down diabetes myths and one that is getting some well-deserved traction this week is Walk With D.
The aim of Walk with D is to help people without diabetes understand what life with diabetes is all about. But more than that, it hopes to address the misconceptions within the diabetes community too.
Diabetes myths are rife. Every day, I hear things that are simply not right about what diabetes is all about. It frustrates me; it angers me; it infuriates me – never more so than when it is coming from within our own community.
I am filled with despair when I see people with type 1 diabetes perpetuating myths about type 2 diabetes with incredibly destructive ‘type 2 bashing’. I don’t know how many times I’ve said the words ‘No one asks to get ANY kind of diabetes’, but believe me when I say if I had a dollar every time I’d uttered that sentence, I’d be wearing a new pair of Manolos almost every week!
‘Even within the diabetes community, there are levels of misunderstanding, misrepresentation, and mistaken messaging, often creating a divide where there should be a bridge.’ – Walk With D website
Help stop the stigma!
As with any successful social media campaign, it’s easy to get involved with the Walk With D campaign. Share your story and use the #WalkWithD hashtag. Make it personal and make it real. Visit the Tagboard on the Walk With D website to see what others are saying about their real life with diabetes. And share. Share. Share.
And if you need more of an incentive to get on board, Lifescan Inc will donate 100 BGL strips to Life for a Child every time the #WalkWithD hashtag is used during November. Get tagging, good people!
Everyone’s diabetes story is going to be different – the diversity of our community is actually one of its strengths! But we can surely unite in our aim to have diabetes spoken about respectfully and with courtesy. Surely we can bond over the fact that diabetes just plain sucks. Surely we can walk together with diabetes, united, with our heads held high and our arms linked.
This Friday is World Diabetes Day which is a chance for diabetes to get some much-needed mainstream attention and awareness.
There is an absolute plethora of activity this week in the lead up to the big day and, as usual, there is much online activity. Social media has the potential to reach a lot of people quickly, easily and cheaply. I’ve been involved in several campaigns in recent years and am always keen to see what clever ideas people come up with to raise awareness of diabetes around the world.
This year, one of my favourites is about access to insulin. The Access Alliance has created a Tumblr to draw attention to the fact that many people do not have easy access to insulin and other management tools, diabetes education and support. It breaks my heart that in 2014, almost 100 years since the discovery of insulin, there are still many, many people who cannot afford the insulin needed to manage their diabetes. This campaign is asking people to remember diabetes is a global issue and for some, accessing the things many of us take for granted – insulin, test strips, BGL meters – is a huge struggle.
I think about this often – in fact, every single time that I walk out of the pharmacy with my 5 x 10ml vials of insulin to load into my insulin pump. For less than $40, I have the next three month’s supply of insulin in my hands to take home, and keep safe and cool in the fridge. I feel guilty when I bitch and moan about the fact that I had to make a phone call to order in the insulin because the pharmacy doesn’t keep it in stock. Really? That’s the burden I deal with when I need insulin? I have to make a phone call and wait 24 hours before popping in to get my prescription filled. 
No one in this day and age should find accessing insulin – or any life-saving drug – a struggle.
So, get creative and make a poster. Take a photo and upload it to the #Insulin4All Tumblr. And then share it with everyone you know – not just people with diabetes. Preaching to the converted is really important because it strengthens the numbers of people advocating, but reaching out to the general community, making people aware of the issues, getting others angry at the inequity of access to healthcare is important if we are going to make change.
Today, a piece I wrote about diabetes-related eating disorders has been published on The Glow (which is Mamamia‘s health and beauty sister site.)
I’ve written before about this topic, and, following some research i did as part of a work project, have presented findings at conferences. The study we did focused on young women with type 1 diabetes. One of the things that kept coming up again and again was how many of these women thought that they were the only one manipulating insulin for weight loss and, as a result, felt ashamed and unsure of where to turn for help.
Help is available. But we need people to be aware of it. We need to be talking about diabetes-related eating disorders – often referred to as diabulimia. I am really pleased that The Glow has published this (they also published one of pieces during National Diabetes Week) and I think it’s great that this condition is being discussed in mainstream media.
There is much known about the progression to the development of type 1 diabetes, but a lot still remains a mystery. We are told there is a two-pronged process, which involves genetic predisposition and a trigger.
But what is the trigger?
Some say it was a virus or a period of particular stress. Others believe it’s environmental. For me, I’ve no idea. I wasn’t unwell with a cold or flu or stomach bug. It was a stressful year with planning our wedding, looking for a house to buy and running my own business. But more stressful than usual? I’m not really sure.
We hear the word ‘trigger’ a lot in health. I know that for me there are triggers that can see me in a downwards spiral leading to diabetes distress, and its good mate, diabetes burnout. Others say they can identify the trigger that resulted in their first anxiety attack. There are triggers that result in ‘attacks’ for those living with coeliac disease or triggers that can cause flare-ups for people with lupus or rheumatoid arthritis, or triggers leading to seizures.
I’ve always wondered about the word. It implies a fully loaded gun that is about to go off – quite an appropriate description really. But what happens for the trigger to be pulled?
Is there, in fact, a ‘trigger point’ as such or is it the moment that we stop and acknowledge that there is something that needs attention?
I can rarely signpost the exact moment that results in diabetes distress. It’s never ‘an event’; it sneaks up on me. Sometimes – though not always – I can see that it is approaching. Does this mean I do something to stop it getting to the point where I am so distressed that I stop my diabetes self-care? Ha – no!
While I may have become better at recognizing that I am on the road to diabetes distress, I’m not so good at identifying the things that send me in that direction. Simplistically, I could say it’s just me getting sick and tired of doing this day in day out, and I am sure that is part of it.
But when I am being particular self-aware and intuitive I know that there are other things that contribute. When I wasn’t feeling good about myself earlier this year, diabetes self-care was the last thing on my mind – possibly because it couldn’t fit in there with all the feelings of sadness.
And I wonder how much of it is also about feeling that my broken body doesn’t deserve looking after. ‘My pancreas is hopeless – so the rest of me may as well be too.’
The one thing that does come out of this all for me though is a renewed sense about what living with diabetes is all about. When I start to see the light and start to feel better about myself and, slowly, slowly, start to reintroduce my self-management tasks, I am able to refocus. I remember that the numbers which scared me and pointed to being a failure are just moments in time. I remember why I deserve to be well and look after myself.
Being able to identify triggers and then respond is a really useful tool in managing health conditions. It’s just finding a way to do that. BEFORE the trigger is pulled. Because no matter what John Lennon says, happiness is NOT a warm gun.
I am as guilty as the next person of being judgemental at times. I like to think that I am not, but I’d be lying to myself if I honestly believed that I never uttered a pejorative comment about other people’s choices.
I really, really try to not be judgemental when it comes to how people choose to manage their diabetes. But I know that I am a zealot when it comes to technology and have been very, very guilty in the past of having conversations that sound like this
‘Are you on a pump? Why are you not on a pump? You should be on a pump? Pumps rock! Your life would be so much better if you were on a pump? That’s not a valid reason for not being on a pump. Do you want the details of my pump educator? Here, let me list the million reasons why I love being on a pump. Let me list them in a LOUDER VOICE to convince you. If you’re not on a pump you don’t really care about yourself.’
I know; I’m an absolute joy to be around sometimes.
But I’m trying to not be like this anymore. And to help remind me, I have made a poster of one of the things that has become a bit of a mantra and have it hanging in my office.
Feel free to substitute ‘diabetes’ for any other health condition. Or simply for the word ‘life’.
Because here’s the thing: when you make a decision about how you manage your diabetes, it is about your health. And that is an incredibly personal decision based on your own perspective, circumstances and experience. It’s got nothing to do with anyone else.
There is one caveat to this that I think is really important.
This works and is all fine as long as the decisions that you make as part of your ‘whatever’, (your diabetes, your life etc.) don’t negatively impact on others.
As a result, anti-vaxxers don’t get to claim this as their own. Because their irresponsible actions do affect others.
Same goes for doing anything that emotionally or physically hurts another person, or has the potential to.
Actually, also goes for people who wear leggings as pants. Because, LEGGINGS ARE NOT PANTS and your decision to treat them that way hurts my eyes.
BUT! If you are making decisions that impact on you and you alone, knock yourself out. You don’t owe anyone an explanation or need to justify your choices. Own it.
Stop for a moment and imagine that the cost of buying insulin for a month was financially crippling to you and your family.
Think about having to make the choice between buying insulin or buying food.
Think about rationing insulin and taking the smallest quantity possible – just so you are taking something, but not what you need.
Think about how terrible you would feel. Think about the thirst and the exhaustion and the fuzziness.
Think.
I don’t do emotive and I don’t do scare campaigns, but this is the reality for many children – and adults – living with insulin-requiring diabetes.
It’s unfair and it’s terrible.
And now think about doing something about it that is actually quite simple.
Many of you will be aware of the ‘Spare a Rose, Save a Child’ campaign that has been run over the last two years around St Valentine’s Day. The basics are – instead of sending a dozen roses to your loved one, send eleven. And with the five bucks you’ve saved, make a donation to the International Diabetes Federation’s Life for a Child Program. That fiver has just provided insulin for a month to a child whose family could otherwise not afford it.
There are many, many reasons to love this campaign; but for me, I adore it because it is simple and tangible. One rose = one month of insulin. Two roses = two months of insulin. I’m a simpleton – this sort of maths works for me!
I know that it’s not Valentine’s Day right now, but it will be in a mere 137 days. Which means that you have 137 days to plan to see how you could possibly contribute to this great initiative.
Contributing doesn’t necessarily mean making a donation – although it is wonderful if you can. You can blog about it, spread the word on Facebook and Twitter, ask your workplace or school to get behind it. You can just TALK to people about it.
Oh – by the way, this was set up by a few do-gooders in the DOC. Yep, that’s right, with nothing but the internet, their contacts and 140 characters or less (and some blogs, Facebook pages and other social media things) they managed to get this up and running. The first year, they raised about $3,000. The second year, they made close to $30,000. (You can use this the next time someone tells you that social media is the work of the devil and nothing good will ever come of it!)
The ‘Spare a Rose, Save a Child’ campaign was discussed at the 2014 Euro Bloggers Summit (disclaimer-y bits on this page). Kerri Sparling spoke about how the campaign came about and how people could get involved. One of the aims of the Summit is to share great work being done by people in the diabetes community. If you have something you would like others to know about, pease feel free to comment below.
There are times – frequently – that I really don’t want to have to speak or think about diabetes. But it comes up. Often in the most unlikely places.
Other times, I hope it won’t, but it does.
Such as going through security at airports. As we left Vienna to travel to London, I was stopped after I set off alarms (again). I had already taken off my boots, my necklaces and my bangles, but I was still making the alarm sound.
I was taken to a curtained-off room for a search and when I produced my pump was shocked to hear the lovely woman from security tell me she’d never seen one before. ‘Never?’ I asked. ‘Never,’ she confirmed.
Same thing happened as we headed Amsterdam. More alarms, more searches, more pat downs and a special little swab for my pump.
So far, it was three for three – Dubai, Vienna and now London.
When we landed in the UK and got to the end of the customs queue, we had a most friendly customs agent chat to us about the reason for our stay. ‘Well, I’m doing some work. And I’ve come from a conference in Vienna.’ ‘What do you do?’ He asked. ‘I work for a diabetes organisation in Australia and I’ll be spending some time with diabetes people here. The conference was a diabetes conference.’ And he was off, sharing the he used to work for a health insurance fund and diabetes is a really, really big problem and why don’t people look after themselves and even when you tell people what could happen to them if they don’t start looking after themselves they ignore you and then they get complications and then……’
And then I decided to not listen anymore, smiled blankly and waited for a new stamp to appear in my passport. Because UK Passport Control is not where I look to have a discussion about diabetes.
A visit to the chemist to buy cough mixture came with the question, ‘Do you have diabetes.’ I wish I could lie and just say no, because when I said yes, there was then a big discussion about the sugar free mixture and having to ask the pharmacist ‘can diabetics take this?’
And then there are the times when it is just a pain in the bum and whilst trying to enjoy a stroll, we have to stop so I can replenish my glucose stores.
Hypo-treating on the streets of London.
A couple of weeks ago in Vienna, I was surrounded by members of the diabetes community – many of whom I am lucky to call my friends. We may live with this condition, but it really isn’t what we talk about when we sit together after the official stuff is over. No, we talk about anything but diabetes for most of the time. It’s actually refreshing!
Because so often, it seems that even when I don’t want to have to think about diabetes, I do.
Diabetogenic 