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Just over three years ago, we sold our house and prepared to move into our new one. The real estate agent we had charged with getting us the best possible price for our much-loved first home walked through each room, nodding his head and taking notes. Once he’d finished the tour, we sat around the kitchen table and he started:
‘Your house is beautiful. You have it decorated very tastefully and it’s incredibly warm. The artwork is just lovely. The rooms are well proportioned and there is a sense of space. It’s really easy to fall in love with this home.’
We smiled at him. Clearly we had nailed the single-fronted Victorian style, not overdoing the period features, instead adding modern touches throughout while still giving a nod to the heritage of the area. Obviously, I should have been a stylist and was wondering how we could get on The Block.
Evidently, we’d be getting a call from the editor of Belle magazine for a feature. I imagined the photo spread: there was I standing in the kitchen whipping up a batch of cookies; Aaron sitting on the front veranda playing the guitar; close ups of the rosebushes in full bloom across the front of the house; the kidlet sprawled on the floor of her room, drawing; me lazily lounging on the couch reading with one of the dogs curled up at my feet….
And then the real estate agent brought me out of my reverie and back to reality.
‘Now, get rid of half of your stuff! There’s a storage place around the corner. Use it! Also, why is there Nutella everywhere?’
We stripped the house right back, brutally removing any details that made the house ours.
The music room was turned back into a bedroom, so by the time we had finished there was not a single musical instrument in the house, except for an oud we’d picked up in Morocco a couple of months earlier. The floor to ceiling CD shelves were dismantled and we held onto a handful of CDs, the rest going into boxes.
Books and bookshelves also were packed away leaving fewer than half our collection on show. Photos were packed away, reminders of our travels stored safely. Nutella jars were hidden away. By the time we finished no one would know that a musical and bookish family who had spent a lot of time traveling the globe and eating Nutella had been living there for 15 years.
The house felt a little like an empty shell, however it did provide potential buyers a sense of the space and feel of the house. In essence, we had taken the house back to basics allowing anyone walking through to imagine themselves making cookies in the kitchen or playing guitar on the veranda…
My diabetes management feels like it needs someone to walk through it and get rid of the excess. It seems there is so much going on – diabetes technology everywhere; bells, whistles and alarms; apps to record, remind and recommend; comparisons between different devices. I’ve been thinking about building some sort of automated system after being inspired following some meetings in New York. I look at numbers, turn them on their head as I analyse them and use the data to make minuscule changes, but don’t feel any clearer about what I am doing. There is a lot happening and it feels a little cluttered.
The thing is, I don’t really know what back to basics is when it comes to diabetes. Is it a complete and utter disconnection from technology? Returning to a basic and planned diet that is similar each and every day? Is it keeping records of everything in a simple notebook, looking for patterns?
Reminding myself of my word for the year – and overarching direction – perhaps I just need to pause and consider why it is that my diabetes management has found itself where it is – slightly chaotic with a lot going on!
It’s time to pause. It’s time to remember why 16 years ago I wanted to start using a pump and why 8 years ago I started using CGM. What were the motives behind those decisions and are they being achieved? Are they still relevant?
Lots of questions. Lots of thinking to do. With an overall aim of simplifying things, and that can’t be bad.
There is so much around at the moment that I wanted to write about properly. But it’s holidays and there is champagne and my kid made brownies with toffee popcorn on top and the neighbours came over for drinks and didn’t leave and I need to pack to go to New York.
So here are some links for some holiday reading.
The title of this piece sure seems to have riled up some people, but bloody hell, just read it. Anna Floreen, who is pretty damn awesome, has written this fabulous piece, sharing her experiences of going through the teen years with diabetes. A must read for parents of kids with diabetes to get some insight into what young people think about dealing with diabetes.
These have become my holiday favourites this year and I’ve made about 4,326 batches of them! Four ingredients, super-dooper easy, delicious and look impressive. Plus, they are gluten free, so great as a gift for friends with coeliac disease. What more could you want?
I’ve had the recipe for them scrawled in my recipe book for years – I can’t remember where I first copied it down from – and this from the New York Times is pretty much how I have been making them.
Great update about the work Ed Damiano is doing on the Bionic Pancreas just published in The Lancet. The study has shown some pretty exciting results. It’s getting close – really close – and that is just so damn exciting! Maybe we can out one on our Xmas lists next year…
If you are a young woman (aged between 16 and 25 years) living in Victoria, Australia, you can take part in a women’s health study, which is looking at the relationships between lifestyle behaviour, physical health and mental wellbeing.
You’ll be reimbursed for your time, so get involved! All the details are here.
THIS poorly worded sign
For the love of all that is good: proof read, people. Please, proof read!
THIS good news
Great news from the Australia Diabetes Society who has just released a new position statement about scuba diving and diabetes, recognising that motivated individuals with well-controlled diabetes (both insulin-requiring and non-insulin requiring), may be able to safely participate in recreational diving.
You know, there are some people in the DOC world who are worth their weight in gold. Lou Vickers is one of them. Read her story here.
THIS (slightly old) article
This piece, from Dr Katherine Barnard and Dr Jill Weissberg-Benchell, was published just after ATTD this year (back in Feb) and provides comment on the relationship between diabetes technology and psychosocial aspects of diabetes. A very interesting read, especially considering the way DTech is moving!
THIS position statement
The National Health and Medical Research Council and the Consumer Health Forum of Australia have released a revised statement about the involvement of consumers in health and medical research.
THIS time of year
So, we’re heading off for a couple of weeks and I’ll occasionally be checking in, but probably not much as we’ll be spending a lot of time trying to keep warm on the cold streets of New York.
Thank you so much for reading, commenting and sharing Diabetogenic this year. The love and support I constantly am afforded by people who read posts here is astounding and makes living with diabetes that little bit easier. I wish I could adequately say just how grateful I am.
I’m looking forward to an exciting 2017 – there is already so much on the horizon with exciting projects, collaborations, activities and plans being hatched. It’s shaping up to be a very busy year, so I’m looking forward to a little downtime over the holiday time.
Season’s greetings to you all. I hope you manage some rest, relaxation and quiet reflection in the coming weeks. I’ll see you in the New Year.
It’s day four of holidays for me. Already lazy mornings, easy days and gentle plans to meet up with friends and family are clearing my mind, and I can feel the backlog of stress and exhaustion – the things that are part of everyday life – start to make way for sharp thinking and smarter decision making.
And in terms of diabetes this means more attention paid to alarms and alerts on my various devices: the calibration alert on my phone for my CGM gets attended to immediately, the low cartridge reminder on my pump is heeded at the first warning. I stop and think before blindly acting, and calmly troubleshoot as I go along.
My head is clearing. I am starting to think about diabetes the way I like, at a level that feels safe and sensible and manageable. I make rational decisions; I take the time to fine tune what I am doing. Diabetes has a place that is comfortable, I feel better overall and far more capable of ‘doing diabetes’.
Earlier this week, the findings from the Diabetes MILES-2 study were launched. (Quick catch-up: MILES stands for Management and Impact for Long-term Empowerment and Success and is the work of the Australian Centre for Behavioural Research in Diabetes (ACBRD). The first MILES survey was conducted back in 2011, with over 3,300 Australians with diabetes taking part. The MILES Youth Report was launched in 2015, reporting the experiences of 781 young people with type 1 diabetes and 826 of their parents. This study formed part of the NDSS Young People with Diabetes Project for which I am the National Program Manager.)
The MILES reboot (Diabetes MILES-2) once again provides a snapshot of the emotional wellbeing and psychosocial needs of Australian adults living with diabetes. Over 2,300 people participated in this study and the results are comparable to those from the first MILES study. The Diabetes MILES-2 survey included the addition of some issues that had not been investigated in MILES, such as diabetes stigma.
Some key findings from the report include:
- 17% of survey respondents had been diagnosed with a mental health problem at some point of their life
- The respondents most likely to experience moderate-to-severe depression and anxiety were those with insulin treated type 2 diabetes
- The respondents most likely to experience severe diabetes distress were those with type 1 diabetes
- The aspects of life reported by all respondents as being negatively impacted by diabetes included emotional well-being (for those with type 1 diabetes) and dietary freedom (for those with type 2 diabetes)
- More stigma was experienced by people with type 2 diabetes using insulin as compared with people with type 2 diabetes not using insulin
Anyone affected by diabetes knows that the psychological and emotional side of diabetes is as much a part of the game as the clinical tasks. In fact, for me, it is the most difficult to deal with. What’s going on in my head directly affects how the I am able to manage the practical side of the condition.
When my head is clear – the way it is slowly, but surely becoming as I settle into holiday mode – and I have time and space to rationally think about, and focus on diabetes, the routine tasks seem manageable. The numbers present as nothing more than pieces of information: they allow me to make decisions, act, or not act. I am able to be practical and seem to have my act far more together.
But for the most part, diabetes is not like that for me. I don’t manage my diabetes the way I want and that is mostly because I am simply unable to due to the distress and anxiety I feel about living with a chronic health condition that terrifies me a lot of the time. I feel overwhelmed and, in the mess of life, diabetes becomes impossible. I am not proud of this – but I am honest about it.
If I am perfectly truthful, there is nothing in this report that surprises me. But it does provide validation for how I am feeling – and how many others with diabetes are feeling too. And I am so pleased that there is evidence to support what so many of us who live with diabetes feel.
It’s no secret that I am a very big fan of the ACBRD’s work. Diabetes MILES-2 once again shines a light on the ‘other side’ of diabetes and serves as a reminder that unless the psychosocial side of living with this condition is addressed, we simply can’t manage well the physical side. And it forces those who want to believe that diabetes is a matter of nothing more than numbers and mathematical equations to consider the emotional wellbeing of those of us living with diabetes each and every day.
There is a dance I do with diabetes each and every day. I praise, celebrate and highlight the good; I avoid, shut out and ignore the bad. The things that scare me are pushed away – as deep as they can go. When they threaten to rise to the surface, I do the equivalent of sticking my fingers in my ears and start chanting ‘la, la, la’ so they recede to where they belong. Out of sight. Out of mind.
I’ve done this for as long as I’ve had diabetes. From day one, I pushed away the ugly and scary images of diabetes complications. I conveniently ignored the warnings and threats. Obviously. Because no one wants to be scared or warned or threatened the day they find out they have a life-long chronic health condition. Or ever.
I am scared. Diabetes scares me a lot. It always has, but for some reason, it is more at the moment. I don’t know why. Nothing has changed. There has not been a frightening experience or a noticeable change in anything. But as days and weeks and months and years as a person with diabetes gets crossed off some imaginary calendar, I am suddenly feeling that it is a countdown to where the really difficult things start.
I worry about what each passing hour is doing to my body and to my mind. If I’m being particularly forgetful, I wonder if it is because my head is so full of diabetes considerations that there is no room for a synonym for fear (dread, anxiety, terror, dismay alarm….) or recalling what day my kid has library each week.
But thinking about it more, I think the fear comes from the lies we are sold about our diabetes. I was promised the day I was diagnosed by a lovely, but most likely completely out of touch doctor, that diabetes is a matter of maths and that if you do the equations properly, it can be easily controlled.
Diabetes can’t be controlled, and with each moment of failure – and there are many and they are constant – I have feared the consequences. And I fear diabetes. With each missed calculation or out-of-range number or confusion about how the hell this thing really works, I see failure. And fear.
Diabetes is not a matter of maths, and the idea that I can control it results in a constant state of high alert as I pretend to be a body part that, when working, is pretty damn perfect. I am not perfect. In any way. And neither is the way I manage my diabetes. It’s messed up. And I’m messed up about it.
And now, as always, there are the fears. And they seem bigger and bolder all the time. I fear diabetes-related complications – long- and short-term. I fear losing the ability to take care of myself and care for others. I fear diabetes becoming so intrusive that I am unable to do anything else. And I fear diabetes becoming the first, last and only thing others think about when they see me. Perhaps most of all, I fear diabetes becoming the first, last and only thing I think about when I see me…
I wonder just how differently I would feel about diabetes – the known and unknown – if I was told at diagnosis that I would get this wrong more times than I got it right. And that was perfectly okay, understandable and acceptable. I wonder how much less significant the feelings of failure would be. And how much more in check my fears would be.
Last night, I was the ‘here’s one we prepared earlier’ on a panel discussing CGM technology. The audience was all healthcare professionals – mostly DEs, but some dietitians, RNs and also a GP-in-training (so much yay to him for coming along!).
I love being in the room for these events! I wrote about my last experience giving the same talk here. I cannot speak highly enough of the two experts on the panel last night. Dr Peter Goss – who spoke at the last one of these events – is what I would call a disrupter in the diabetes healthcare space and, honestly, all the power to him. He may ruffle some feathers with his sometimes unorthodox approach, but it is undeniable that he is a champion for kids and teens (and young adults) with type 1 diabetes. Also on the panel was A/Professor David O’Neal who is best described as a truly awesome endo (I have heard that from every single person I know who sees him as their endo) and an absolutely brilliant mind. His expertise in diabetes tech is second to none and he is genuinely interested in how the technology can safely, efficiently and effectively be incorporated into the lives of people living with diabetes.
I know that all sounds rather effusive. But I need to point out that they are remarkable. And that they are the sorts of HCPs you want on your side if you are a person with diabetes.
Because now I am going to talk about language and why I pulled them up a little bit after we all did our presentations and sat on the stage ready to answer questions from the audience.
As happens frequently when I am in the room with a group of healthcare professionals, the conversation turned to language. Okay, I made that happen. In fact, the words I used were ‘I’m going to hijack this conversation because we really need to talk about language here.’
One of my biggest pet peeves is the jokey, and somewhat snide, comments made about people with diabetes making up numbers in their diabetes log books. Because, it’s not a joke. It’s not something for HCPs to roll their eyes over and dismiss as ‘non-compliant’ behaviour.
The word that was used for PWD who make up numbers in their books was ‘fakers’. I cringed the moment I heard the word. And cringed even more at the audience’s response – laughter, heads shaking from side to side and knowing looks. I looked around the room and knew that we would be talking about this later on in the evening!
As I pointed out when the panel was seated on the stage, I absolutely did this. And I was incredibly good at it – different coloured pens, splotches of blood on the pages, dog-eared corners of the book. Once, I even splattered a few drops of juice, because on that particular page, I was having a lot of lows and I thought the juice would make it look more authentic.
Now, let’s all just remember for a moment that I was diagnosed as an adult. This wasn’t insolent teenager behaviour. This was a woman in her mid-twenties who was terrified of disappointing and being judged by the HCP to whom she would be handing the grotty book and its made up numbers.
I told the room my story of this last night and there was laughter – because the way I spoke about it was amusing. It was a cheeky anecdote. But at the time, it wasn’t funny. I was scared, I hated checking my BGL, I was paralysed by numbers that didn’t make sense and I didn’t know what to do about it. So I lied. Of course my HCPs knew that. And I knew my HCP knew.
But the question is about WHY people do this. The discussion needs to stop being about diabetes at that point, because really, managing BGLs and most other diabetes tasks is not the issue here. The issue is distress, anxiety, fear. And, in my case, I felt desperate.
One of the panellists made the point that the reason that he brought it up was because HCPs need to know what to do when someone is ‘faking’ their numbers. He’s right. I completely agree. And then there needs to be understanding of how to approach it, which is likely to be different with each PWD.
For me, it took until I found a HCP who I felt I could trust – one who wouldn’t judge the numbers that were out of range (which one HCP always circled in red pen, making me feel even more like a delinquent adolescent) – and was interested in knowing what was stopping me from feeling able to check my BGL.
When we worked through that, I was better equipped to not only regularly check my BGL, but also to deal with the numbers and act upon them. I came to understand that a number was nothing more than a piece of information that I could use to make a treatment decision – not an indication of me being a good or bad person.
Language does matter. And words count for a lot. Using the word ‘faker’ in this context is loaded with judgement and accusation, and even if that is not the intention, it made me – a person with diabetes – feel very uncomfortable. But mostly, it fails to consider the real problem at hand which is not that a PWD is making up numbers in a book. It is why they feel the need to do that.
It’s day 2 of Diabetes Blog Week, and the silver lining of being awake at 5am this morning was that I managed to catch up on most of the posts from day 1. This week comes from Karen Graffeo who, as she commented on my blog yesterday, I’ve not met. But we will be remedying that very shortly so I can hug her and say thanks for this. And make her buy me a coffee to help manage the sleep I’ve lost each year (and am yet to make up!) since taking part in #DBlogWeek.
Today’s prompt: We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?
Just this morning on Twitter, I was having a conversation with a few people and eventually I found myself commenting on the emotional side of diabetes. The discussion was specifically relating to someone who had recently started using an insulin pump and I made a comment about how the learning curve could be steep and to take it easy.
Someone jumped in and said that he found the learning curve to not be steep at all (which is great and also highlights the different ways different people respond to diabetes). He commented that he thought it was pretty straight forward and that most people should be able to follow some basic principles – such as timing of glucose checks and understanding what happens around food and insulin (a movable feast as far as I am concern – there is no understanding, just watching with confusion at why something worked yesterday but not today….).
This may be true. There probably are some principles that could be consistent for most people. However, this was not addressing everything I was referring to which may contribute to the gradient of that learning curve.
Matters such as insulin dosing, timing of glucose checks and counting carbs are, just like working out which buttons to push on the new device, technical. But I believe this is certainly not the only side to diabetes.
I pointed out that it was more than just the technical side to a pump start and commented as such, adding ‘…emotional concerns of ‘attachment’ can be difficult for some, explaining in my next tweet that the term attachment was referring to being connected to something 24/7. (This is something that almost everyone I have ever spoken to has mentioned as a real barrier to starting on a pump or other wearable device – the idea of a constant, attached to the body reminder of diabetes. It was even a discussion last Friday at #DX2Sydney.)
Too often, some forget that diabetes is not about only about operational matters. The equation of ‘you eat, you take insulin to cover the food and then you are all good to go’ does not hold true. In the case of technology it is not, ‘you learn to press buttons and then you are fine.’ Just as I am much more than my diabetes, my diabetes is so much more than food, medication and devices.
When people ask me what I find the most difficult about living with diabetes, I am able to answer without hesitation. For me it is a combination of the relentlessness of the condition alongside the way in permeates all aspects of my life. It is particularly disturbing and distressing for me when it impacts my family who shouldn’t have to deal with diabetes.
I don’t have the answers or know how to fix these troubles. But I do know that there are a few things that help.
- I have learnt to be kind to myself.
- I have learnt to not compare myself with anyone else.
- I have learnt that this too will pass – even the darkest diabetes moments have had light somewhere.
- I have learnt to rely on the people around me who love and support me.
- I have learnt that the moment that I get complacent and think I have this diabetes thing sorted, I absolutely don’t.
- I have learnt that looking to the DOC provides me with a million things I’ve not thought of, and one of those things may work for me today.
- I have learnt that sometimes I need to draw a line in the sand, call it a day, and admit that diabetes is winning right now. But that doesn’t mean it will tomorrow.
- I have learnt that when all else fails, the things that make me feel best are a hug from Aaron and the kidlet, a message to one of my far away diabetes friends, a perfectly made coffee or a glass of Prosecco, and something to take my mind off diabetes.
- I have learnt that even though I have really had some dark emotional days with diabetes, I get up and do it again tomorrow. Because that is the only option.
This morning as I was buzzing around getting ready for work, I suddenly stopped. I realised something that had obviously been creeping up on me so incrementally that I had not noticed it before.
I looked around the bedroom and saw empty cannula packaging from the line change I had done when I got out of the shower and the empty sensor pack with the date written on it so I would remember when it was inserted. I went back through my CGM trace and pump history, noticing where I had bolused for a high BGL, set a temp rate for an impending low and calibrated at the appropriate times. I checked the history on my BGL meter and saw that I have been checking regularly and that the numbers were not as crazy as they have been.
I looked in my bag and saw a spare bottle of strips, my fully stocked ‘emergency’ kit, and a juice box and a small container full of glucose tabs ready in case I needed them.
When I got into work, my desk was prepared for all contingencies – more glucose tabs on the desk, a couple of spare cannulas in the top draw, as well as a few syringes. And a few single portion packs of Nutella.
I was – I am – managing my diabetes – well and without any stress at the moment. The burnout fog that had enveloped me for a long, long time seems to have lifted without me even noticing, and the diabetes tasks that form part of my day and had been so, so difficult to manage, have become routine. I do them without thinking. Checking my BGL and calibrating my CGM just happens. Bolusing for meals or my morning milky coffee is done before I take that first taste rather than half an hour later because my CGM is blaring at me that I am high.
Am I feeling motivated? I’m not sure that is the right word. I don’t have a desire to do these things. I am not so focused on diabetes that I think about it all the time.
But I am doing what I need to. Routinely. Just like brushing my teeth, combing my hair and putting on a necklace in the morning.
Perhaps that’s the thing about managing diabetes well. It’s the balance between getting the things done and not panicking about them. Or feeling so anxious and guilty because they are not getting done.
I don’t know the secret to this change. I do think that a big part of it is wearing my CGM all the time. Once I managed to hurdle feeling overwhelmed by the data and just accepted the numbers for what they are and acting accordingly, I feel much more driven to ‘do diabetes’. And perhaps as I see that things are not as dire as I often imagine them to be, I feel that I can just get on with things.
This is the roller coaster of diabetes. The ebbing and flowing of motivation and being in the headspace to get things done. I’m in a good place for now. I just have to work out how to stay here.
I made a commitment to do the #30DaysOfDex challenge at the beginning of the year. Actually, I have been wearing a sensor continually since the beginning of December; so really, I am at about day 45 now.
I have a love/hate relationship with CGM technology. I adore it far more than I dislike it, but still, there have been times that when I simply can’t face wearing it. But that actually has nothing to do with the actual tech. I wear a device that I truly believe I can rely on – and I know that because calibrations are spot on. Even though I’ve been using this particular type of CGM for about 3 years now, I am still surprised at just how accurate – just how often – the results are.
No, the reason I don’t wear it all the time is because I have found it too burdensome when headspace is not right. When there is too much else going on or I am feeling overwhelmed, I just can’t face alarms and numbers and a machine that demands I be responsive to it.
But through some trial and error, I have found ways to lessen those demands, yet still use the device effectively.
Firstly, I’ve had to identify what I hope to achieve from wearing a CGM. Really, there are two aims: have fewer wild BGL swings and pick up hypos as early as possible with a hope of avoiding.
I also identified what I didn’t really care about and that included having a BGL sitting at 5.5mmol/l the whole time. In fact, I am not even aiming for BGLs between 4 and 8 the whole time. I raised the upper limit to avoid some alarms. I don’t want to hear screeching every time I hit 7 or 8mmol/l. At this stage, I am not interested in that. I don’t mind if I hit 10 or 11 after a meal, as long as it doesn’t sit there all day.
It’s not about the number values – for me it’s about fewer variables, because when I am all over the shop, I feel like crap.
So what have I found after a month and a half with this attitude? By and large, it’s been a successful experiment – am far more responsive to the alarms that sound now and I don’t feel frustrated. And I am able to find patterns. It is incredible how I was low or high at the same time each day without knowing it. Or rather, I probably did think it was the case, but with the data and graphs, there is no way of hiding it. I don’t log – it’s been a long time since I had – so I was relying on memory. ‘Was I low at 3pm yesterday as well? Maybe…. Was I? Or was I high?’
The thing that I have come to understand about CGM (and I may be a little slow to the party here) is that the ability to customise it means that I can find a way to benefit from it, even when I am feeling totally burnt out and can’t be bothered with the minutiae of my diabetes.
I don’t need to have a perfectly straight line for CGM to be considered successful. It’s not a waste of a sensor (and therefore a waste of money) if my BGLs do hit and play around at 10 or 11 for a while. This is kind of a breakthrough for me – I’m feeling quite proud!
Something else that has become clear while wearing CGM is that my BGLs are actually not as unstable as I think they are. Oftentimes, I am sure that I am really high, or moderately high or really high. I know that if I wasn’t wearing CGM and was feeling unmotivated, I would use that as an excuse to not check. ‘I know I am high. I don’t want to see a high number because it will make me feel worse. So I am going to bury this head of mine in this sand over here and forget about diabetes.’ Diabetes? What diabetes? Let’s build a sandcastle!
The reality is that of course my numbers are not perfect, but they are actually, most of the time, okay-ish. And I am generally okay with okay-ish! Okay-ish keeps me sane and keeps me happy.
CGM makes me think about my diabetes more. It makes me in tune with it more and it does make it easier for me to manage. Perhaps I have taken a long time to work out how CGM works for me – maybe I have wasted some time or not worn it when I could have benefitted. But for now this is what works really well. And it’s a really good way to start the year.
This week is Jean Hailes for Women’s Health Women’s Health Week. (Yes, there’s a lot of women and health in that sentence, but given it’s the focus of the week, let’s work with it.)
I quite love the theme of the week which is Let’s Talk. The idea is that we get rid of the elephants in the room and talk about health issues that we sometimes find tough to discuss. It’s a great concept! Having people opening up – or at least being able to access information – about health issues that are sometimes not discussed is really important. Plus, there are gorgeous pink elephants all over the promotional materials and that can only be considered a good thing!
Now clearly, I don’t have an issue speaking about health issues. I very openly talk about my experiences living with diabetes. I have willingly and candidly spoken about fertility issues and miscarriage. I have also discussed the body image concerns that I have lived with for most of my life. Mental health is frequently discussed on my blog – usually in relation to diabetes.
But while I am happy to bang on about any health concern that I may be dealing with, that isn’t the case for everyone. That’s why this week is an important one.
And it is why we need people who are happy to share their stories out there. We need people to be discussing the things that are a little ‘underground’ or that make people squirm a little.
Each day of the week has had a different focus. On Monday, the results of an online survey were released. The survey combined responses from 3,300 women aged between 18 and 87 years, and healthcare professionals including nurses, GPs and HCPs.
Yesterday, the attention was directed towards natural therapies, looking at the safety and effectiveness of natural medications and treatments. There was great advice about questions to ask (yourself and your HCPs) before taking any natural therapies.
Today, it’s all about what is not being talked about. Starting with the difficult topic of domestic violence, the website provides advice about the issue and lists placed to go to for help. While there has been quite a bit of attention in the media given to domestic violence this year, the statistics are horrendous and we need to be doing more.
Also on the agenda for today is mental health and there are links to some valuable information about depression, anxiety and emotional health.
The rest of the week is about managing our health and healthy living.
I understand that not everyone is happy to share their story. And that is fine. But even those who prefer to stay silent and keep any health concerns to themselves still may look for information and advice. And shining a light on some of the less talked about health problems faced by Australian women with a bright and bold campaign does just that.
So. Let’s talk!
I frequently give talks about how to get the most of our healthcare professionals. One of the things I talk about is making sure that we find the HCPs that work best with us. I talk about interviewing doctors – something that I did years ago when I was looking for the right endo. It’s a two way street. One doctor told me that he didn’t think that we would work well together. He was completely right and I walked out of that appointment rather quickly!
I also talk about being really clear and upfront about things – what we need from our HCP, what we expect. And then give them the opportunity to do the same thing.
This is pretty much what I want to say to every HCP when I meet them for the first time.
Hi. You and I are on the same side. My side. We are both championing for me to be the best I can be with the cards I’ve been dealt.
I thought that we would start out by me telling you what I need from you and I would love it if you did the same. This is a relationship that works two ways. You need things from me and I need things from you. Let’s get all that out on the table from the beginning.
Mutual respect is really important. I come with mine ready to give to you. I won’t, however, be quite so generous if you don’t demonstrate the same thing.
Judgement is not welcome in our consultations. That message is actually for me as much as it is for you, because I am totally judging you. I expect you to be judgemental and not understand me or my condition. Show me that I’m wrong. And then don’t judge me for being such a pain in the arse!
My health condition is one that you know a great deal about. That is why I am coming to see you. I want to know everything thing you know that is relevant. But I need you to remember that I have a unique expertise in the field of Renza’s Diabetes. I am the world expert in this field and I will impart everything I have learnt and continue to learn about it to you. If you could then help me make sense of that, I’d really, really appreciate it.
I am not stupid. I have a really good understanding of the health system of which I am, unfortunately, a user. I also know a lot about the technical sides of my condition. I totally get that you need to make sure that I am clear about what you are saying, but please don’t dumb it down too much for me. I promise that I don’t care about looking stupid. I’ll ask if I don’t understand.
I use humour a lot to try to deal with what is, at times, a really scary thing to live with. Sometimes you may think that my humour is not particularly appropriate. A lot of the time you won’t find me funny (but for both of our sake, please pretend; I promise to ignore your fake laugh). I don’t make fun of the situation because I am making light of it. Or because I don’t care. I always care a great deal. But sometimes, it’s what I need to get me through.
I’m really not good at asking for help. But I am coming to see you because I need it. I may seem to be going the long way around getting to actually ask for what I need. Feel free to ask and prompt and even push a little.
I’ll say it again. I care a great deal about my health. I want to be healthy and well and on top of everything. There will be times – and they may be extended times – where it seems that I don’t care. The important word there is ‘seems’. I do care. Really. Sometimes though, it is just overwhelming and exhausting. But I really, really do care.
I have a beautiful family and a great job and a shoe collection that may make you jealous and really like to drink coffee. I bake a lot and love old black and white films. I have wonderful friends I spend time with – frequently over a meal somewhere. Exercise and I are not mates. I read voraciously and should probably seek some sort of therapy for my inability to stop buying books. I have a thing for bright red lipstick and have too many handbags. I love Nutella. And bacon. And doughnuts. You may wonder why I am telling you this. It’s because all of these things are part of my life. Just like diabetes. And it goes to explain why diabetes is not the most important thing in my life or the thing that I focus on all the time.
I’m terrified about my future. I am scared about diabetes complications, I lie awake at night worrying about the chance of my daughter getting diabetes and I fear becoming a burden on my loved ones. Diabetes is scary. It is not just a condition of numbers and lab results. It is (an unwelcome) part of my present and my future.
I solemnly swear that I will never, ever walk into your office asking you about some ridiculous cure I read about on the internet. Remember that bit about me not being stupid? But equally, the internet is where I get a lot of my support and information about living with diabetes. I have a support network of people living with diabetes from all around the globe. They build me up, tell me about new things, help me work through tough times. They are, to me, as important a part of my diabetes management as you are. Don’t treat them with suspicion.
So, did you know that cinnamon can cure diabetes? I’m disconnecting my pump and eating cinnamon doughnuts and nothing more for a week to see how it goes. Just kidding. (Pretend laugh. Now.)
And finally. I want you to remember all the time that I am doing the best I can at that very moment. It may not be as much as you would like, but this isn’t about you. It’s probably not as much as I would like either. Acknowledging what I am doing makes me feel really great. And frequently then makes me want to do better.
Thanks for reading. I really do hope this is the beginning of a beautiful doctor-PWD friendship.
Friday tunes. Oh, Vinnie Barbarino!