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Two things happened that got me excited on the 6 train when I was in New York back in June.
Firstly:
Obviously, every green circle in the world ever is a tribute to Loop. That’s my story and I’m sticking to it, and I refuse to be told otherwise.
And secondly:
Click on pic to be taken to the campaign where you can clearly see this and other images.
I absolutely love this from NYC Department of Health and Mental Hygiene. The campaign is called ‘Choose the Best Words’ and encourages people to speak with their friends and family, and learn how to support those who need it. Ads like this one also highlight a recent city-funded mental health first aid training course that is offered in all five NYC boroughs. The ads, which were all over the subway and other places in the city, point out that using the right words and phrases to support those living with mental illness is really important and can help reduce associated stigma.
I guess this kind of follows on from yesterday’s post. I know that often people say things just because they feel the need to fill a silence…or just to say something, not realising the impact of the specific words they say. But it does matter. The choice of words you make really, really matters. And this beautifully simple campaign shows that.
This is an edited version of a blog post I wrote over three years ago, but refer to frequently. Because it seems that there is a human need to force people to feel that their lives could be worse – so much worse – so they should be grateful that it’s only diabetes they have to contend with. Or that they only have a certain type of diabetes, because the other one is worse. Or that they were diagnosed at a certain age or in a particular decade, which is (somehow) better/easier/less crap than a different age/different decade. Oh, and of course…at least it’s not <fill in the blank>… because that would be worse.
I say, fuck that.
I get that people genuinely are just trying to make others feel better about a situation. Here’s the deal though – no one really expects that. At least, I don’t. I don’t need anyone to try to buoy me up or make me feel better. I don’t need anyone to point out others have it harder (yeah – I know that…). I just need people to nod. Aaron really has it nailed, and I tell everyone that he knows just what to do in those moments when diabetes is pissing me off: offer a cup of tea, some chocolate, and loudly pronounce ‘Diabetes sucks‘. I don’t think he realises just how validating that is and how much more meaningful it is to me rather than insisting I look on the bright side and be all Pollyanna-ish about my screwed beta cells.
Next time you are tempted to say ‘…at least…’ to someone with diabetes (or, for that matter, someone who is having a rough time about anything at all), stop for a minute and think about what you are really saying. Because honestly, you’re not helping at all.
For the sake of my own mental health, I have learnt to not compare myself with others.
I was thinking of this the other day when I was involved in a conversation with a woman newly diagnosed with diabetes. She told me that she was really upset at the response from a close family member who, when told about the diagnosis and how distressed she was, responded with ‘It could be worse. At least it’s not cancer.’
I’ve had that said to me. Several times. And it is one of the most offensive things I have heard. I don’t really know how to respond to it, because it’s true, I don’t have cancer. But I do have diabetes and that is pretty bloody horrible sometimes. (For the record, I equally dislike the idea of responding with ‘At least it’s not cancer? There is a chance of remission with cancer; type 1 is for life…’)
I get just as annoyed when it happens in our community. ‘At least it’s not type 1,’ is something I have heard said to people with type 2, diminishing the challenges they may face. A woman who had just been diagnosed with gestational diabetes told me that people kept telling her that at least her diabetes would go away when her baby is born. Sure, that may be the case, but right here and right now, this woman is pregnant, thinking about her baby and wondering just what diabetes is doing to her growing bub.
When I was anxious about my impending cataract surgery a few years ago, I was told ‘It’s nothing. At least you don’t have to have laser or have your eyeball injected.’ Again, that’s true. But I was still terrified and had every right to be.
When discussing a nasty hypo ‘At least you didn’t lose consciousness and wake up to a roomful of paramedics.’ Sure, I remained conscious throughout that unpleasant and seemingly endless low. But I needed help to treat it and it happened in front of my kid. She was scared, which really upsets me and makes me feel guilty.
When our experiences are belittled or minimised, it means we may stop sharing them. No one wants to be told they are being a drama queen and that it could always be worse. Of course it could be worse, but that doesn’t mean what we are dealing with doesn’t suck.
I have had diabetes for 21 years now. I have not had to deal with debilitating complications. I have not had to spend weeks in hospital because of my diabetes. But does that mean that my fears and concerns and anxieties are any less relevant than someone whose experiences are different?
And that’s why you will never hear me say to someone newly diagnosed ‘At least you have just been diagnosed. Just wait until you have had diabetes as long as me and <this or that> happens,’ because everyone’s experience is different and that newly diagnosed person may have their own concerns at that particular time. Or not. Which is also fine.
I had a healthcare professional once tell me that at least I didn’t have diabetes ‘too terribly’, because I worked, had a child and travelled. It was one of those (incredibly rare) moments where I was stunned into silence. I was torn between wanting to say ‘Well, surely that makes what I’ve achieved all the more incredible‘ and stabbing her with a fork. I said (and did) nothing.
There is no ‘at least...’ when it comes to diabetes. There is no discussion about how it ‘could be worse’. Because the truth is, it could be a whole lot better. I could NOT have diabetes.
The perfect Effin’ Birds response (because there always is one!) if someone says ‘At least….’ about your diabetes. (For more of these wonderful sweary birds, click on the image. And buy the book!)
Catching the end of Women’s Health Week, revisiting this post from last year about all things girls, women and diabetes. Today, on the final day of the campaign, Jean Hailes for Women’s Health is suggesting that we take some time to think about our mental health. That sounds like a good idea anytime, but I’m really pleased to see that the organisation is highlighting this important, under-researched and misunderstood health issue. Check it out at their Women’s Health Week website.
I’ve really appreciate today’s messages – they couldn’t have come at a more opportune moment! But that’s not to say that the rest of the week wasn’t just as terrific. Have a look at each day’s theme – there is lots of important information to read through.
And have a read (or re-read) through this post which was all about a lot of the things we don’t talk about enough. When I published it last year, a number of women reached out and said they used this as a conversation starter with loved ones and HCPs. That might just work for you too…
It’s Women’s Health Week here in Australia and once again, Jean Hailes for Women’s Health has been doing a stellar job of talking about women’s health issues that are rarely (if ever) spoken about in the public sphere. As usual, this year’s campaign is presented in a clear, no-nonsense way. Just as it should be.
Shining a light on women’s health issues is critical for a number of reasons. There is still too much stigma associated with women’s sexual and reproductive health, so finding a way to easily speak about the realities of women’s health just makes sense.
Not all women’s health issues necessarily seem relevant to diabetes. But, as ever, diabetes has a way of complicating things, so it makes sense that they are on the list of things covered when speaking with our HCPs.
I honestly can’t remember the last time my GP spoke with me about any sexual or reproductive health issues. Some women see gynaecologists regularly (I see mine every couple of years for a pap smear), but that may not be the case for most women. Surely conversations about contraception, periods and other things should be part of a regular check-up alongside other ‘tick the box’ issues such as blood pressure, cholesterol and weight.
I wish that I had seen an endo from the beginning who had spoken to me about women’s health stuff. I know that it wasn’t until I found the endo I see now – one who I sought out specifically for her expertise in women’s health and pregnancy – that issues such as contraception were even mentioned.
So, here is a (non-exhaustive) list of things that women with diabetes may want to consider chatting to their HCP about – and that HCPs may want to consider speaking with PWD about. (There are links at the end of the post for where to go for further information.)
Periods. To be honest until I was trying to get pregnant, I really didn’t think much about my period. I thought of my lack of regular periods (as in, I would get my period sporadically maybe four or five times a year) as a blessing, rather than something to be concerned about. Of course, once I was trying to get pregnant, I was desperate for a monthly period that I could set a clock to.
No HCP had ever spoken to me about how diabetes would impact on my period – or, probably more importantly, vice versa. I had no idea about how different times in my cycle might affect my glucose levels. In fact, I think it wasn’t until I started wearing CGM and could really see what was going on that I learnt how to manage my insulin doses at different times throughout the month. (And it also explained the two days each cycle I was so freaking low I pretty much took no insulin. Apparently that’s how MY body deals with ovulation..)
If I was diagnosed today, I would be asking a lot of questions about diabetes and menstrual cycles and the best way to adjust my management methods depending where I am in my cycle.
Sex. When I’ve written about diabetes, women and sex before, I’ve noted how at diagnosis no one spoke with me about how diabetes could impact on my sex life. It wasn’t until I started speaking to other women about it that I realised that this is an issue for a number of us.
We need to start talking about women with diabetes and sex in a non-threatening way that normalises the discussion.
UPDATE for this revisited post: Check out this brilliant resource that came out of the research led by UK health psychologist, Professor Kath Barnard. This is one of those projects that I was just so damn pleased to be involved in!
Contraception. No one mentioned contraception to me when I was diagnosed. I was twenty four, engaged to be married. Surely both the endo and CDE I saw the day I was diagnosed realised that I was having sex, or considering it after I was married. (I really, really hope that they didn’t think that they didn’t need to speak about it with me because we weren’t married yet…because it was only 20 years ago and there’s no place for puritan attitudes in healthcare. Plus, that ship had sailed. A long time before.)
At the time, I was on the pill, but there was no discussion about the best form of contraception for me relating to diabetes, (was there a better pill to be on?), and I didn’t know to ask. Surely, all women of child-bearing age should be asked regularly about contraception, especially as women with diabetes are so often told about the importance of avoiding unplanned pregnancies.
Pregnancy. Thankfully, these days finding information about diabetes and pregnancy is relatively simple. If you know where to look.
But twenty years ago, when I was diagnosed, the only thing I was told about diabetes and pregnancy (and I think it was only because I asked) was ‘You need to have all your kids by the time you’re thirty’. (Not sure if just scraping in three days before I turned 31 counts there. Probably not. Looks like this deliberately non-compliant palaver has been happening for a while….)
Talking pregnancy and diabetes needs to be done delicately, but it needs to happen. And, ideally, it needs to happen long before pregnancy is even being considered.
Back in 2003 when I was at Diabetes Vic, I coordinated the first diabetes and pregnancy info evening. Over 100 people were squashed into an overheated room in the basement of the old Royal Women’s Hospital. At the end of the night, I was walking around speaking with as many of the people who had come along as possible to see if they had found the evening useful. I walked up to one woman and thanked her for coming. ‘I hope that you found tonight helpful,’ I said to her. She nodded at me, and I noticed she was holding onto a copy of the ‘Can I Have a Healthy Baby?’ booklet that Diabetes Victoria had published with Realty Check and ADIPS the previous year. ‘My daughter has T1D,’ she said to me. ‘She’s only 8, so obviously this isn’t something that is relevant now. But I wanted to know so that when she asks questions I can answer them. I feel really reassured that she can have a baby if she wants one if it’s planned.’ I remember reaching out to her and hugging her (I have no boundaries). ‘Your daughter is so lucky to have you in her corner,’ I said to her. ‘Thank you for coming!’
Fertility. This isn’t the same as pregnancy. It’s not an easy subject – ever – but it is one that needs to be discussed openly and safely. I can honestly say that no healthcare professional has ever discussed fertility with me unless I have raised the issue.
My experiences around fertility have been complex, emotional and quite painful. It took me a while to get pregnant the first time. My irregular periods needed to be addressed (fortunately, that was easy enough with only Chlomid needed), but even once I was having monthly cycles, and apparently ovulating regularly, I could not get pregnant.
When finally did, I miscarried. Miscarriages are common. I know that. But it still sent my spiralling into a really difficult period which took a lot of time and effort to emerge from. I got pregnant and had a baby, and thought that from there, fertility issues would be a thing of the past.
But I think that because miscarriages are so common that sometimes it can be forgotten just how traumatic they can be. My first miscarriage ended my first pregnancy, and the two other miscarriages I had ended those ones. It’s clear that while I seem to be able to get pregnant, keeping those babies growing, safe and alive is not something my body does well. I wanted that explained to me – or at least for someone to speak with me about it.
Diabetes and fertility was never, ever discussed with me, except that I was reassured after each of my miscarriages that I could not blame diabetes for losing the baby. That was a double edged sword because I wanted to know what it was that was stopping me from being able to continue my pregnancies. I would have liked to be able to point at something. Because the alternative is that it’s just another thing my body can’t do properly.
PCOS. I was diagnosed with polycystic ovarian syndrome when I was about 26. I’d been referred to an OB/GYN by my endo because she wanted me to have a gynaecological check-up because we’d started seriously talking babies. My lack of regular periods was flagged as something that needed investigating and an internal ultrasound showed a number of small of cysts all over my ovaries. I had no other symptoms of PCOS, but that was enough for my OB/GYN to speak with me about potential fertility issues once we were ready to start trying for a baby. I had a laparoscopy and they were removed.
Both type 1 and type 2 diabetes can increase the risk of PCOS (more so type 2 diabetes) so this is definitely something to discuss with your healthcare team if you are in any way concerned.
Body image. I don’t even know where to begin with this because body image is such a huge, huge concern for so many women, and I really do believe that diabetes amplifies those concerns. Whether it is the physical signs of diabetes (tech that we wear on our bodies), the psychological side of being diagnosed with a life-long health condition or the emotional toil of having an allegedly invisible condition that we can’t help but see every day, living with diabetes significantly affects how we feel about our bodies.
This is one of the reasons that having a psychologist as part of our HCP team is important, because we need people who are able to ask the right questions and offer support and solutions for dealing with how we see our bodies.
Eating disorders. Diabetes and food; food and diabetes. It’s impossible to separate the two, and for some people, the relationship is complex and very, very difficult. Women with diabetes do have an increased risk of developing an eating disorder, and of course, there are diabetes-specific eating disorders. And, unfortunately, this is another issue that is not spoken about openly.
Menopause. At my last appointment with my endocrinologist, I raised something that I’d not raised yet. ‘What can you tell me about diabetes and menopause?’I asked her.
I’m not going through menopause – I’m not even peri-menopausal yet. But I don’t need a magic mirror into the future to see what lies ahead. And I like to be prepared.
So, there’s something you should know about how I came to see the endo I have been seeing for the last almost-17 years. I was searching for someone who could help with what I really needed, one of them being an expertise in T1D and pregnancy. She was absolutely the right endo for me then. And continues to be now, because recently, she has become an expert in menopause. (I know! It’s like she is a few years ahead of me in her areas of interest and expertise!)
If I’m honest, I’m a little stressed and worried about what menopause has in store for me when it comes to my diabetes, mostly because I know nothing about it. We’ll see how that plays out…
Self-care. Why do women find it so hard to prioritise our own care and take care of our own wellbeing? We do need to get better at fastening our own oxygen masks before making sure that everyone else on the plane has theirs in place.
This might be another reason to consider seeing a psychologist to ask for some tips for how to make sure that we remember to look after ourselves in a way that is healthy, consistent and achievable.
Pelvic floor. Diabetes, as the gift that keeps on giving, can mean our pelvic floor isn’t as strong as it could be. Just as nerves in other parts of our bodies can be affected by our diabetes, so can the ones in our pelvic floor.
(You’re doing your pelvic floor exercises right now, right? Yep. Me too.)
Looking for more info? Have some links…
Here’s the Jean Hailes for Women website for Women’s Health Week.
The rather awesome Mindy from There’s More to the Story has been writing about diabetes and sex over the last couple of months and her posts are a must read. I wish I’d had something like this to read when I was first diagnosed.
Some information about diabetes and PCOS. This article is about type 1 diabetes and PCOS. And this one is about PCOS and types 1 and 2 diabetes.
The NDSS Diabetes and Pregnancy website is an absolute goldmine of information about pregnancy and planning for pregnancy. There are different sections for women with type 1 and type 2 diabetes, HCPs and loved ones of women with diabetes.
The NDSS Type 1 Diabetes and Eating Disorders booklet can be found here.
Lots of valuable information for PWD and HCPs at the Diabetes and Eating Disorders Awareness website.
Window seat on a Qantas flight back to Melbourne after a busy few days at #ADC19 and to say that I am exhausted doesn’t touch the sides of how I am really feeling. It’s been a busy conference, but then, when are conferences not busy? I’ve spoken to a lot of people, sat in a lot of meetings, heard a lot of sessions. But that’s just the usual way conferences go.
My exhaustion started before I even got in a cab to the airport on Monday. And really, that exhaustion isn’t just about the sore legs, the lack of sleep or the mental overload of trying to digest stats and presentations, or wandering around a huge conference centre.
I’m so burnt out right now. Not diabetes-wise; advocacy wise. I’m weary. And I feel so, so beaten that I almost ache. I feel like I am at the edge of tears a lot of the time because everything feels like such an effort.
This is a challenge when working in, while living with, diabetes. Even when my diabetes is impacting as minimally as I could ever hope it to (thanks to the Loop god/esses again), the big world of diabetes is there in a way that, at times, crushes me. I used to feel like this a lot more when I had to spend so much time justifying to co-workers the value and importance of the work I and my team were doing. That’s not the case now, but there are still times that it all does feel like it is too much.
And when I feel like this, things that usually would barely be a blip on the radar are weighing me down. I usually am ready to take on whatever is thrown at me, or whatever I see that needs the PWD voice to interject, but right now that actually feels like a burden. A relentless burden where my efforts are misfiring or yielding hardly any benefit. The fire that is usually ignited in my belly feels like instead of fuelling my enthusiasm and passion is instead giving me heartburn.
Right now, being in this advocacy space is making me feel hopeless. I know that there are always allies that truly do believe in what I believe in – the value of the PWD, the need for us to be heard, the value and vastness of our experience and expertise.
But the voices of those who don’t necessarily feel that way are especially loud at the moment. It’s the HCPs who still (STILL?) question the right for PWD to be wandering around and on the stage at diabetes conferences, the comments about how the value our lived experience doesn’t equal the weight of scientific evidence, the messaging that I keep seeing everywhere I turn that misrepresents diabetes and actually does PWD a disservice. It’s the idea that others think they can dictate to PWD how we need to see the safe places we have created, or tell us that because they can’t back up with data when we say a technology, or a service or a program helps us, it is not valid or deserves funding. It is being confronted constantly online and offline and at every opportunity, when really, if we say we feel a certain way about living with diabetes, we actually do have the right to have that unchallenged.
And right now, I don’t seem to have the energy to try to counter that.
I tried to explain to someone the other day why I rarely let something that I see as being negative towards PWD go by. I know that it would be easier to ignore a lot of the crap and let it just slip by. I know that being angry is tiring. But that isn’t enough for me to not respond.
Usually, I have the resilience and robustness to address whatever the issue, and then whatever gets thrown back at me. I don’t think that I am the only one who can do this, but I do know that often I am one of the few people who actually is at the table while it is happening. Once, where I was the only PWD in a meeting of HCPs someone told me that I didn’t need to have an opinion on everything and I pointed out that actually, as the only PWD in the room when others were making negative comments, I actually do. And that it was in my position description, so I was simply doing my job.
I am tired. I really am.
Having my tribe around me this week has helped – it always does. But even with this support, and the laughs and the knowing looks and the understanding, I’m feeling beaten. (I am so grateful to have had them around this week…I’m not sure how I would have otherwise coped…)
I know it’s a phase but this time I don’t know how to locate the strength I need to get back to where I like to be. Or to push down the doubt and imposter syndrome that shoots up alongside this sort of advocacy burnout. That’s what happens – just as with diabetes burnout – we start to second guess out efforts and wonder if what we are doing is enough or really has any point. There is a point – I know that. There has to be. Because the personal investment is vast and really, there is no other choice but to keep on keeping on.
Grateful for my tribe.
‘I’m bored with diabetes. So, so bored.’That was how I opened last week’s appointment with my endocrinologist.
She nodded at me. I’m sure it wasn’t the first time someone had commented on the boring nature of diabetes. It’s programmed into the DNA of the health condition we live with. She waited for me to go on (she really is the master of not filling silences).
‘What can I do to shake things up? What should I be doing?’
It was a repeat performance of my last appointment back in February. I walked in with this need to shake things up; do more; be more proactive; add stuff to my routine.
My endocrinologist, thoughtful as ever, waited some more for me to finish my brain dump. So, off I went…
‘I am doing so little to manage my diabetes these days. I’m not burnt out – that’s not what I am saying at all. I’m not doing that thing where I pretend I don’t have diabetes. I am doing everything I need to do, except these days, it seems I don’t really do much. Loop keeps Looping and I really feel that my only input is making sure there is insulin in my pump and a working cannula and sensor in place. I bolus as required.
‘But it doesn’t seem enough. There was time each day that I had set aside for diabetes that I don’t need anymore because managing rollercoaster glucose levels, or responding to countless alarms, or managing those hypos that resulted in multiple lost hours…these things just don’t happen anymore. Or if they do, they take so little time to address that it almost seems insignificant.
‘I feel like I am not doing enough. So…what can I do?’
When she knew I had finished sharing my stream of consciousness, she looked straight at me and said: ‘You do exactly what you are doing. There is nothing more that I would suggest or recommend that you do. You asked last time about adding some different therapies to your current management, but there is nothing that would suggest any benefit to that.
‘If you were not looping and doing what you used to have to do and all that entailed and telling me what you are telling me: that you are feeling well, you feel your diabetes is in a good place, you are not feeling burnt out and that you are happy with how and where your diabetes was tracking right now…and if that was accompanied by the A1c you are running, I don’t think we would be having this conversation. I doubt that you would be asking what more you could do. You would know that you are meeting all the targets you want to and are feeling overall great about your diabetes.’
Of course, she was right. That was my situation two years ago: I was feeling fine about my diabetes (or as fine as I ever was going to) and was thrilled with my A1c (which wasn’t as low as it is now). And I certainly wasn’t thinking that I needed to do more. I accepted that I was putting in the effort and for once was seeing the outcomes I liked. The idea of adding more tasks to my diabetes life would never have entered my mind!
‘I know you are right,’ I said to her and then mentioned the talk I’d heard at #DData last year when fellow DIY-er, Justin Walker, said that since using OpenAPS he saved himself about an hour a day. ‘An hour a day. That’s a lot of extra time I didn’t have before. I don’t know what to do with it,’ I paused. ‘Maybe I should take up knitting.’
‘You could learn a language in that time,’ she suggested, helpfully.
It has me wondering if this is a thing for others who have embraced the DIYAPS way of life. Have you all just embraced this renewed freedom and extra time and run with it, or are you too wondering what to do with your hands?
Nineteen years of constantly focusing on the minutiae of diabetes, and second guessing myself and having to DO SO MUCH diabetes is a really hard thing for me to unlearn. The last two years have been really, really different. Who knew that my response to finally getting that break that I so desperately wanted would be to not know what to do with myself and want to do more?!
Since Looping, diabetes has taken a back seat in my life because the daily demands are far fewer. Sure, the emotional toll is still somewhat there – especially when it comes to the fears I have about the future. But the daily frustrations and intrusions are not there. And that means that as well as having to physically do less, I think about it less. I had no idea just how much that all took until I stopped doing it.
I get that this is coming from a position of extraordinary privilege, and feel free to file it away under not only first world, but also first-class problems. And ignore me. (Seriously, I thought of myself as insufferable when I was having conversation last week.)
Or send me knitting patterns. In the meantime, I’ll be over in the corner conjugating irregular verbs.
I’ve been struggling the last week or so. It’s a combination of a lot of things. It’s the typical post-NDW slump. It’s the relentless Melbourne winter weather. It’s coming down from a few months of intense travel. It’s dealing with people doing annoying things. Plus, more annoying people throwing a bit of body shaming in my direction – new and fun. It’s the white flowers on the kitchen table, which wedded to the sadness that is never too far out of reach suddenly feels overwhelming, signifying that time of year.
It adds up. All of it. And people notice. ‘Is everything okay with your diabetes?’ someone asked me when I mentioned I was having a little bit of a tough time. I glanced at my green Loop, and my Clarity app and clocked my time in range. ‘What diabetes?’ I said, knowing that I was doing less than ever in my diabetes management, yet yielding results that just a couple of years ago would have taken attention, effort and energy that I just don’t have.
Then someone else asked me a similar question. ‘Are you feeling a little bleurgh (my word – not theirs) because of your diabetes?’
Well no. But yes. Or as we Aussies like to say ‘No, but yeah but…’. (For the record – I have never ever uttered those words in that order…)
Diabetes is not the source of me feeling over everything. I can’t point to any aspect of my diabetes that is playing up, giving me a hard time, being a jerk. But can we ever truly extricate diabetes from our emotional wellbeing?
I looked at the things that have been adding up. Post-NDW slump happens because the lead up to and then a week of solid diabetes-ing will always mean diabetes overload. The weather means less time outdoors and doing things that take my mind away from the mundanity of diabetes – it’s seasonally affected diabetes and it brings me down because I’m far too much in my own head. The travel exhausts me, and the jet lag overpowers me and that means not sleeping which means diabetes behaves less predictably; annoying people are just bloody annoying and because of the playground I frolic in, are often connected somehow to diabetes. White flowers – something I have written about to share the personal way I mark the heartbreak of pregnancy loss – and the loss they represent, and grief they signpost is tied up with a body that is broken in part due to diabetes.
Diabetes may not be the reason for any of these separate pieces of a bigger puzzle, but it is there for each and every single one of them, no matter how small. And together, it really does start to add up.
We often want to shout from the rooftops that sometimes it’s not diabetes. The frustration we feel when everything – from a grouchy mood through to a broken arm – is blamed on our beta cell dysfunction. It’s not diabetes – rarely is it ever only diabetes. But it is never without diabetes.
I know there is light at the end of the tunnel – that I’ll be all good. NDW always gives way to the next thing and focus moves to that; blossom on trees and the daffodils in florists everywhere guarantee warmer days; the travel will start again and I’ll get back into it and just get through it; the annoying people will continue to annoy, but I’ll be better at ignoring it (at least, that’s what I tell myself…). And the white flowers? They will die and the vase on my kitchen table will instead hold something new and bright, and the grief will return to where it lives, burrowed there with the lost dreams and the memories I didn’t get to make.
And diabetes? Oh, that will still be there. Never the main thing, because I will never let it be that. But there, nonetheless.
Last week, Instagram got rid of ‘likes’. The company line was that it wants people to concentrate on content shared, rather than its popularity. Sure, Instagram, let’s go with that.
For the platform that is preferred by ‘lifestyle influencers’ (seriously – can you imagine putting that on your arrivals card?) it all seems a little disingenuous, but if not knowing who is liking content speaks to you, then perhaps this is a good idea.
I have a love/hate relationship with Instagram. I have mine pretty locked down and only share with friends and family. I only follow people who make me feel good, or make me laugh. I don’t follow anyone who makes me feel like I am not enough. Or anyone who drinks kale juice for breakfast. These good folks can namaste themselves elsewhere.
If you are connected with me on there, you’ll know that what you see mostly is photos of my family, the coffee I’m about to drink, the cookies I have just baked, and, depending on the season, blossom trees (hello, promise of spring) or jacaranda trees (hello, promise of summer). Plus, there’s diabetes spam…so much diabetes spam.
You won’t see me telling you about my perfect diabetes life though, because my diabetes life is not perfect. And you won’t hear me going on about how grateful I am that diabetes has given me so much, because really, I’m not. And you won’t hear me saying that others have it worse and that I am #SoBlessed, because … well … because #FuckThat.
I wrote once that I despise the concept of ‘At least…’ or ‘It could be worse’. Could it worse? Of course it could! But having a body that does what it is meant to would be a shed-load better!
Positive affirmations are great if they give us hope or something to hold on to. They’re not great if they start to make us feel like we are failing, or feel bad for not always being optimistic and upbeat. Sometimes, diabetes makes it really hard to walk on the sunny side of the street.
I frequently say diabetes sucks (because honestly, I am yet to hear someone tell me how it doesn’t), or that there are days that I truly hate diabetes (because I really, really do). This doesn’t mean that I am looking for someone to throw me a pity party. It doesn’t mean that I think my life is hopeless.
But some days, diabetes is especially challenging, and no number of positive memes or positive self-talk is going to change that.
I am a positive person by nature – annoyingly so at times. I see the good in people and in situations. But I refuse to believe that it is not okay to sometimes admit that my arse has been beaten that day by the health condition that is so difficult to live with, or to privately and publicly say that I truly, honestly, totally, absolutely despise diabetes.
I need the space to have those down days and the bad days and the days where I admit that I am not a superhero. I need the time to snuggle under a quilt on the sofa and watch some trash and not feel all positive or like I can conquer the world.
It is easy to believe that a lot of Instagram diabetes folks are all happy and accepting or grateful to have diabetes. Truly – if they are and are able to maintain that positive attitude all the time, that is wonderful. I’m not those people. I don’t resent them in any way. I just believe it is important to understand that not everyone is able to have that sort of outlook.
Sometimes, it’s not possible to ‘positive’ your way out of a bad diabetes day or try to convince yourself that you don’t hate diabetes, but really do love your body when it feels just so damn broken. And that is okay.
Really – it is okay to not be okay. It is okay for us to not be shiny, happy people* all the time.
What I will say is this: If your hard days are outnumbering the good days, please do see if there is someone who can help. It truly is okay to feel down about diabetes, but when you are feeling that way all the time and it’s affecting your day-to-day life, there is help.
When I find that the scales are definitely tipping that direction, my first port of call is my friends with diabetes. They never make me feel crap for not being positive. They certainly don’t feed my misery, but they do remind me that this is hard and that it is perfectly understandable and acceptable to have negative days. And closer to home, my husband knows that I don’t need a pep talk, or to be told to snap out of it, or a reminder that life could be worse. He tells me that diabetes sucks while passing me some chocolate. Smart, smart man.
I have come to learn the signs of when I need more help than that, and have a great psychologist I can link in with when I need to. I can’t tell you how much this has helped me. One of the first things my psych said to me was that it was okay to grieve my old life, and to feel that diabetes sucked. Being given permission to feel down at times felt like being able to breathe again.
And here’s the rub: knowing I don’t have to be Ms Positivity all the time – and saying just how hard things can be sometimes – actually has made me far more positive in the long run.
*I was talking about this with my beautiful friend Georgie yesterday. She is one of the first people I turn to when I am having a shitty diabetes day and we spend a lot of time just talking about how hard it can be. Her advice is always spot on. Or there is no advice – just an ear and a shoulder and a coffee date. As we were chatting, I said the thing about it being okay to not be shiny, happy people all the time, when I realised (and told her) that REM reference was from before she was born. Oh, how we laughed and laughed. And then I felt old.
Right here, Georgie and I ARE being shiny, happy people.
The other day, I was standing in a noisy café, waiting for my take away coffee to be ready, not really paying attention to anything, other than a tree I could see that had what must have been Melbourne’s first promise-of-spring blossoms. Suddenly, a loud noise dragged me from thoughts of warmer weather and not needing to wear fifty layers of black to leave the house. The man standing next to me turned his head and I caught him looking at my phone.
‘Your Dexcom is wailing,’ he said to me.
‘Indeed it is, needy little shit,’ I replied, after I got over my surprise at his comment. Usually people just look annoyed at the disturbance.
‘So…you’re one of us?’ I asked him, pointing to the pump I’d just noticed on his waist band.
‘Yep. Hi! I’ve never, ever just come across another person with diabetes in a café or just out and about,’ he said. ‘Have you?’
‘Ridiculously regularly in the last few of months,’ I replied, and told him about the mum of a young woman with diabetes at the airport lounge, the security guard at the airport in Amsterdam who referred to me and my travelling companions as a ‘diabetes club’, the woman talking about Libre in my favourite local café, and now him in this café near work.
‘Maybe stay away from airports and cafes. That seems to be where PWD congregate,’ he helpfully suggested.
At that exact moment, my pump beeped its on-the-hour alert that it was sitting on a temp basal rate.
My diabetes-in-the-wild mate looked at me, his eyes narrowing. ‘Now your pump is beeping. Oh – are you looping?’
I was more than a little startled at that one. The noise my ancient Medtronic makes on the hour is not loud at all – three little beeps to gently remind me that a temp basal rate has been activated by Loop. ‘Wow,’ I said. ‘Your hearing is next level. And yes. I am.’
We did the usual diabetes stat check: length of time with diabetes; age of diagnosis; things that drive us nuts; inventory of our diabetes devices; a couple of amusing diabetes anecdotes. ‘I pulled my pump line out on the door handle of my office today,’ he said. ‘Have you ever done that?’ I laughed. ‘No – don’t be ridiculous! I am a smart and clever and always paying attention person with diabetes. Of course I’ve never done that… And by never, I mean once every couple of months for the eighteen and a half years I’ve been pumping.’
My Dexcom fall rate alert wailed again. ‘I’m ignoring it. Hoping it will go away,’ I sighed. ‘Yeah,’ he said. ‘I’ve been doing that with diabetes for the last 32 years.’
We looked at each other and mirrored in his face was the same expression I knew I was wearing – slight defeat, but also defiance. It’s the default expression that so many of us living with diabetes wear when we are feeling a little over it all.
The barista handed me my coffee, and juggling my phone and coffee and umbrella, I turned back to friend. ‘Lovely to chat,’ I said to him. ‘Always nice meeting one of my tribe.’
‘Tribe? Is that what you said?’ he asked.
‘Yep,’ I said, a familiar feeling washing over me: The ease and comfort of talking with someone who absolutely understands. In the place of making our own insulin, we make connections. And I was reminded, once again, how these chance encounters, along with the time I get to spend with my friends who have diabetes, sustain me.
‘Find your tribe. Love them hard,’ he said. ‘Isn’t that how it goes?’
I nodded and took a deep breath, raising my coffee up to him as I started to leave the café.
‘Yes. That’s exactly how it goes.’
Blossom…
This is an edited version of the first post I ever wrote about my experiences attending the Kellion Victory Medal Award Ceremony. I wrote it back in 2011 (for the old Diabetes Victoria WordPress blog), ten years into working for a diabetes organisation, and already had attended a number of these award ceremonies.
Since this post, I’ve written about other ceremonies I’ve been lucky to attend, and shared the stories of the medal recipients. I love hearing their tips and tricks, and tuck away their words of advice for when I need them. Peer support, I think, as I hear them talking. Their stories are our stories are my stories…
Today, I’m back for this year’s Victorian medal ceremony. I flipped through the program and read the stories of the people receiving their medals. This was my favourite quote for the day. It’s so, so true.
Today is my favourite day of the work year. It’s the Kellion Victory Medal award celebrations where we acknowledge people who have lived with diabetes for 50, 60, 70 and even 75 years. Just stop for a minute and think about that. Seventy-five years with type 1 diabetes. Now think about what diabetes was like back then: urine was boiled, needles were sharpened. Home blood glucose testing was still about forty years away, modern insulins hadn’t been considered. Insulin pumps, of course, were things of the future.
When I started working at Diabetes Victoria, I had lived with diabetes for just under four years, and in that time I hadn’t met anyone else with type 1. I was still getting used to the new reality that had opened up the day I was told that I had type 1 diabetes. My 27 year-old self had re-written my future, and instead of the life I had imagined, I had reshaped that into one that involved terrifying diabetes complications, probably no children and a reduced life expectancy. I pictured myself unable to take care of myself at a time in my life where I wanted to be travelling and seeing the world. And I saw a life where my still-new husband would have the burden that is a wife with diabetes.
Because that was the picture of diabetes that had been presented to me in the four years since my diagnosis. Time after time, the health professionals I saw delivered news of doom and gloom. And inevitability. Hope was not discussed. Except, strangely, the promise of a cure in five years – although I could tell that even the medicos telling me this didn’t believe it. I felt devoid of hope. Hopeless.
And then I was invited to the Kellion Medal ceremony. I can still remember clearly my apprehension about attending the awards, but I went along to Parliament House to see what it was all about.
It was the best thing I could have done. It wasn’t about living with diabetes for decades. It was about LIVING. I heard tales of travels, raising families, busy and successful working lives. Stories of being pioneers to make sure people with diabetes were not discriminated against. I heard stories of hope.
Kellion medallists are in every way remarkable – not because they are inspirations for living with diabetes. That’s just what they have to do as part of their life. They’re remarkable because they’ve made diabetes just something they do. In learnt that I needed to stop holding them up as some sort of magical unicorns – they were just playing with the cards they’d been dealt. The same way I do.
Each year I walk away from the awards ceremony with an ‘injection’ of motivation and determination. And a booster shot of hope. That’s my response to the day and the medalists – but not their responsibility.
We have a duty to be honest to people newly diagnosed with type 1 diabetes. Promising a life that is full of puppy dogs and bowls of cherries does not accurately paint the picture of what life with diabetes is all about. But neither does scaring people senseless. When people are in that initial fog, where they can’t see beyond the end of the week and they are starting to rewrite their future, that is when they need stories. The positive and real ones. The stories of hope.
If I could find a way for every person newly diagnosed with diabetes; for every parent of a child newly diagnosed; every partner, loved one, sister, brother of someone newly diagnosed with diabetes to attend the Kellion Medal awards, I would.
There is no promise of a cure, no threat of nasty complications, no dread of being a burden. But there is laughing and sharing and amusing stories. And hope. To meet a Kellion Medallist leaves people feeling one way: filled with hope.
With National Diabetes Week launching tomorrow in Australia, I’m resharing this post today.
Once again, Diabetes Australia (disclaimer again – I work there, but sharing this becuase I am choosing to be because it’s so important, not because I’ve been asked) is once again running parallel campaigns about the importance of knowing the signs of type 1 and type 2 diabetes.
I’m really pleased with this year’s campaign, because we’ve gone harder than in the last two years by highlighting that not diagnosing diabetes in time is fatal. I know that sometimes we get nervous using words like that, but the reality is that missed or misdiagnosis of type 1 diabetes is fatal. People have died. And that is not good enough. (Melinda Seed wrote a powerful piece about this just yesterday – please read it.)
I echo Mel’s plea and ask that you will share the poster below with your non-diabetes networks. Do it now, and do it regularly. Sure, share it in your diabetes support groups and with your mates with diabetes. But if that’s all we’re doing, nothing is going to change.
I am certain that almost all the people who read this blog are in some way affected by diabetes. (Because, really, if you are not, why would you be reading?) It makes sense that the people who want to hear about my real life with diabetes have their own real lives with diabetes.
Most of the blogs I read are to do with diabetes. Most of my interactions online are to do with diabetes (with the occasional detour down avenues of language, Nutella recipes, Effin’ Birds, and idolising Nigella).
It makes sense and there is nothing inherently wrong with focusing on things that we understand, or that is interesting to us personally. Of course we feel a connection when reading stories by others going through similar experiences, and that makes us feel safe and less alone.
This week, however, I am hoping that a lot of what we are talking about is received by people outside the diabetes world. Because #ItsAboutTime that others know and understand the importance of early diagnosis and treatment of diabetes.
It’s National Diabetes Week (#NDW2019) and Diabetes Australia’s campaign this year is building on the 2017 and 2018 campaigns of raising awareness of the signs and symptoms of type 1 diabetes, and the fact that there are 500,000 Australians with undiagnosed type 2 diabetes. (Disclosure: I work for Diabetes Australia. I am writing about this because it is an important issue, not because I have been asked to.)
These days, my loved ones and I know all about the symptoms of diabetes. And somehow, I knew them just over 21 years ago when I walked into my GPs office and said ‘I’m thirsty all the time, I can’t stop peeing, I’ve lost weight and I’m exhausted. I think I have type 1 diabetes.’
My GP told me that she thought I was being a hypochondriac, so I’m actually not sure if she would have sent me off to pathology for a fasting glucose check as quickly as she did had I not prompted her with my (as it turns out correct) self-diagnosis. (In hindsight, getting me to pee on a stick would have been an even better idea, but I didn’t know that at the time…)
The rest of the story is that a few days later, I was told I had type 1 diabetes. That’s my whole story. It’s utterly, completely, totally uneventful and, quite frankly, I love that it is.
But that’s not the way it is for a lot of people. In fact, each year 640 Australians end up in hospital because the signs of type 1 diabetes have been missed. In many cases, these people have already been to see their GP one, two or more times because they , or their families, have known that there was something not quite right, and they were not checked for type 1 diabetes.
Is that your story?
Here’s the thing: if you have diabetes, or someone you are close to has been diagnosed type 1 diabetes, you know the signs. You may not have known them beforehand – in fact, you may have your own diagnosis story that mirrors those that we are sharing throughout NDW – but you know them now. You are not the target audience for this campaign.
The target audience is people in the community without a connection to diabetes. It’s GPs who are not routinely asking people to pee on a stick so they can quickly and easily check if a person has glucose in their urine.
We need to tell those people. Because we can talk all about this amongst each other all we want, but then all we are doing is adding to the noise in the echo chamber. We need to step outside of the diabetes world and shout from the rooftops 4Ts of type 1 diabetes:
These symptoms need to trigger people – everyone – to automatically think type 1 diabetes.
Share the poster. And ask everyone you know to share it too – including people not affected by diabetes. #ItsAboutTime we ALL knew the 4Ts so that we can diagnose and treat type 1 diabetes sooner
The Diabetes Australia NDW2019 campaign can be found here.
And here’s a Facebook Live video that Grumps and I did yesterday where we speak about the campaign and some other things too.
Diabetogenic 
