How to “Stop Trying” with Type One Diabetes

I rang my diabetes clinic a week or so ago and asked to be discharged from the Diabetes Pre-Conception Clinic. I don’t see the point in continuing to attend a clinic that falls on a day that is inconvenient for me and has a purpose that no longer applies to me.

The lady who took my call sounded bored, in a slightly off-hand way, and distracted from the conversation from the very start.

“I can’t discharge you. You have to see the doctor for that” she sighed, after I’d made my initial request.

“I’m sorry, but that just seems like a waste of everyone’s time” I replied, in my very best, polite voice.

“But you might still need to be seen” came the response. “I can change your appointment, but you’ll have to wait a while as the clinic seems pretty busy.”

“Which is my point. I’m trying to be one less patient to be seen, because I don’t need to be seen.”

“But you need to check with the doctor. You might still need the appointment.”

I’ll freely admit that I had a pretty low tolerance on this particular phone call. Of course I’d rather not be making it. I’d rather be progressing through the pre-conception clinic to the pregnancy clinic and out the other side. I don’t really need anything making these bitter little jobs any harder than they already are.

“No” I said, more firmly this time. “We’re not going to be getting pregnant, or having a baby.” I paused to push back the tear that had begun to form at the corner of my eye. “We’re infertile and it isn’t going to happen. Why would I possibly need to be seen in a pre-conception clinic when I cannot conceive? I know you have policies, but I just want to cancel my appointment and not make another one. I want to return to the same clinic I have been seen at for the past fifteen years instead.”

There was a moment of silence on the other end of the line. I could hear the tapping of keyboards in the background.

“Well maybe you should just keep trying until you see the doctor to check.”

It was my turn to sit in a stunned silence for a moment before I gave up, muttered my thanks (for nothing!) and hung up.

Of course, what I should have said was along the lines of “How dare you? Just because I have a medical condition does not mean I give up rights to my body and my life and what I do with it. It’s bad enough that I have to wait for the medical green light before trying to conceive, although that is with good reason. But I don’t have to ask anyone’s permission to stop trying.”

Suppose I had been calling in as a bereaved woman, or a woman facing a different acute health problem that had forced thoughts of conception in to the background?

And I’m still astounded at the waste of NHS resources that will arise from me not being able to simply remove myself from an irrelevant clinic. I suppose it’s a safeguarding measure, not allowing patients to decide for themselves that they no longer need a particular service. But the clinic aren’t there holding my hand every day and making sure I’m actually taking the insulin I rely on to keep me alive. By opting out of healthcare altogether, I would harm myself in the long term. But if I want to give up on life, that, ultimately, would be my choice too.

I suspect that she wasn’t really paying full attention to me and what I was saying. I expect she answers the phone all day long to a public that I know only too well can be rude, difficult and demanding. But what she said still stung me. Not only was it lacking in common sense, but also in common decency and empathy.

Infertility is often regarded as trivial in comparison to many other health issues, because the prevailing wisdom says that having children is a “lifestyle choice”. Even if you believe that to be true it doesn’t follow that people facing infertility should be treated with such blatant indifference.

We’re still people, after all.

Diabetes and IVF

One of the reasons I gave for sharing our IVF journey was to do a small bit towards addressing the paucity of information about handling type 1 diabetes alongside fertility treatment. Of course, I then got wrapped up in the actual trying to get pregnant stuff, and so far have mentioned very little about the diabetes side of things.

Before I started IVF, however, I was somewhat frustrated by the lack of information about doing it alongside diabetes. There are a handful of threads of a variety of fertility forums, and a similar number on a range of diabetes forums, but just a few personal experiences recounted on blogs and very little credible scientific or medical literature.

That is not to say there is nothing of use, just not all that much and it would be remiss of me not to share a couple of helpful resources. One of the first sites I turned to is a blog written by Cheryl Alkon which is sadly no longer updated. Cheryl underwent fertility treatment back in 2006 and blogged her way through it, sharing a number of useful insights. She then went on to write the successful book “Balancing Pregnancy with Pre-existing Diabetes” (which I reviewed here). The book itself also contains chapters on fertility treatment. (Some of the information contained in the book may not be strictly relevant for readers outside the US, but it is an excellent starting point.) And another useful resource and personal account of the IVF process can be found on The Kaitake Blog, written by a New Zealand woman, who is happily currently about half way through her pregnancy.

I wondered, though, whether the fact that I couldn’t find more was because the combination of IVF and diabetes is not that common. But looking back now, having actually done it myself, I think it may be more likely that it isn’t talked about much simply because there isn’t that much to say that isn’t standard diabetes advice about frequent testing and adjustments.

And my own quietness on the subject is almost certainly a reflection of there not being that much to mention. I can honestly say that diabetes has not had a major impact on IVF, and whilst IVF has obviously affected my blood sugars to a degree, it has not been horrifyingly unmanageable. After all, if you live with diabetes, you have to be used to a bit of unpredictability!

If you ask people who, by their own admission, know very little about the process of IVF to share what they do know, many of them seem to mention the “induced menopause”. In proper IVF-speak this is known as “down regulation” – the process of shutting off the bodies own hormonal cycle, before starting to stimulate the ovaries to produce lots of eggs. However, this isn’t an inevitable part of the treatment, and not everyone undergoing IVF goes through the down regulation process, otherwise known as the “Long Protocol” (LP).

I was on the alternative option – the “Short Protocol” (SP) in which stimulation of the ovaries begins on around day 2 or 3 of the cycle, alongside drugs to prevent ovulation. As the name suggests, this a quicker treatment cycle, injecting for around 8-14 days in total,compared to 3+ weeks.

This has distinct advantages for people with diabetes. Firstly it is a less dramatic suppression and replacement of your own hormones, so my guess is that it has slightly less dramatic effects on blood sugar levels. And secondly, the shorter duration means fewer days overall of taking drugs with the potential to affect control.

As it worked out for me, I spent a month taking the contraceptive pill before commencing the active part of the treatment. This is common as it allows clinics to time your cycle, as well as reducing the risk of cysts (ha – that obviously didn’t work for me!) or the uterine lining not being thin enough. I’ve taken the pill before, albeit a long time ago, so I had some idea what to expect. Typically taking external oestrogens raises my requirements for insulin by around 25%. So I raised my basal rates around the clock and kept a close eye on the CGM. Which worked out well.

I then had a break of about six days between stopping the pill and starting to inject Burserelin, the medication which prevents ovulation. In my previous hormone-using days, I had a different profile set up in my pump for the hormone free week. However the week off medication was a stressful one, with discovering a cyst of my ovary and having it drained. I realised afterwards that I had maintained the increased basal rate with only a modest increase in hypoglycaemia during that time. And when I started Burserelin, everything fell back into place.

The leaflet included with Burserelin specifically mentions that it may cause raised blood sugars in people with diabetes. And based on my experience, I’d say that effect is equivalent to the effect of oestrogen. Your diabetes may, of course vary, as it is a completely different hormone. My best advice is to test, test, test.

The stimulation drugs – I was on Menopur – by contrast, had very little noticeable effect on things. I had a number of stubborn and sticky highs, but an equal number of troublesome lows. Overall, I’d say my blood sugars seemed a bit more volatile – swinging more from high to low – than has been normal for me of late. But stress and anxiety during fertility treatment have a lot to answer for too, and obviously it becomes impossible to tell for sure what is affecting what.

The bottom line, however, is that IVF with diabetes is totally do-able. Compared to the changes you will experience in pregnancy (which is the intended outcome, after all) it really is a walk in the park. As with everything diabetes, frequent testing helps. A CGM helps even more. And a pump provides the flexibility to react day-to-day and hour-to-hour much more than multiple daily injections.

I’ll definitely do it again if we have to. And diabetes would be a very long way down any list of reasons not to.

LiveBlogging IVF – Is It Appropriate?

I’ve thought long and hard about how much of our IVF experience I want to document and share. I’ve been hesitant for reasons of personal privacy. For not wanting the pressure of everyone knowing exact dates and the expectation of an announcement of pregnancy or otherwise. I’ve been hesitant about putting it out there on the internet when not all of our friends and family even know what we are embarking upon. I’m aware too, that it’s of little interest to most of the people that read my writing, and I don’t want to become an infertility bore.

Ultimately, however, I’ve decided that I want, need, to record this process, and whatever the outcome is, so that I can look back and remember what we went through to create our second child, or remember that, yes, we really did do everything we could to make that dream a reality. I don’t really feel the weight of expectation of our pregnancy outcome. I’m long past dreaming that I could announce a pregnancy as a surprise; I’ve been talking about trying to conceive for at least a year now. I might not choose to share the outcome of the cycle immediately. That might be because I’m pregnant. It might be because I’m having a hard time processing and accepting the fact that I’m not. Either way, you’ll have to wait until I’m ready to share that information. Choosing to write this experience down in my own words does not equate to choosing to give up control of what I share. 

And I want to share it for another very important reason. I want to share this journey to add my voice to all the others who have walked this road before, and to offer information, solidarity and support to all those who will follow after me. There is surprisingly little good quality information written from the patient perspective about assisted reproduction, especially in the UK. There is even less about IVF as experienced by women with type 1 diabetes. The fact that I’ve been looking for this information suggests that there are likely to be others who are too. And I’m happy to put this down, and to share my story, however it pans out. If it can help just one other person, it will be a job well done. And if I can gain just a tiny bit of support for myself out of it, that will be fantastic too.

Because that is what is at the heart of almost all patient-perspective writing about health: Support. A small word, but a massive concept.

Who is anyone outside the arena of what is being shared to judge those of us going through it? 

I’m prompted to ask the question because it seems that there are some people who feel sharing the details of an IVF cycle online is inappropriate or undignified.

My first reaction to this is actually to feel hurt. Because that implies that it is OK for many hundreds of thousands of couples to have to live with this reality, but that we should go on doing it behind closed doors and in secret. To me, that attitude belittles how tough this journey can be. Of course there are worse things that can happen, but as I’ve said before all suffering is relative. Infertility is hard. Going through infertility treatment is a roller coaster of chance and hope, worry and fear. It may not be life or death in a traditional sense, but it the making or breaking of dreams and wishes and the outcome can change your life and the plans you may have had. In addition, the relatively short span of any given treatment cycle can make all those emotions seem enormously intense. The only people who have a hope of really knowing what this feels like are other people who have been there. And the only way to find them is to share.

Infertility my not be chronic, let alone terminal, and I’d never try to equate it to any other condition, but questioning the appropriateness of sharing the infertility experience to me is akin to questioning the ethics of sharing a cancer battle – a point I raise because it is something that has met with prominent backlash strong enough to lead to withdrawal of the article in question by Emma Gilbey Keller on the US Guardian website in recent weeks. Keller drew attention to the story of Lisa Bonchek Adams who is chronicling her battle with breast cancer very publicly across social media channels. “Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies?” Keller asked. Tied up in this one statement is the belief that this level of sharing is rather tasteless – inappropriate and undignified perhaps? It’s not only offensive, it also completely misses the point.

If such things make YOU uncomfortable, YOU should turn away. Those of us in the thick of our stories don’t have that option.

The uproar around Emma Keller’s article relates specifically to Lisa Adams and her cancer treatment, but the issues are equally relevant to all forms of patient-perspective writing and social media usage. As Kerri Sparling puts it in her eloquent piece on the same topic “Being honest about life with illness and disease can be the best, albeit non-prescribed, ‘medication’ yet. Whilst it may also frighten and unnerve, honesty and community can validate, and empower, and inspire.”

Like Kerri, I’ve already benefited from this at first hand in the online diabetes community. And when I was diagnosed with epilepsy, online was the only place I found I could talk about it without fear of judgement. And that’s a big thing. The internet has opened up the opportunity for so many people to share things from behind the safety of a screen that they might otherwise find difficult in person. It has also helped lessen the obstacles of time and geography and given us access to the opportunity to meet far more people, so whilst our in-person networks of friends may not include anyone who has shared a similar experience, online such a person is only ever a click away. 

These are the reasons I’ve decided to be honest about our infertility journey and to share the experience. There are so many good reasons for me to do so, and very few reasons not to and as such, if it’s really a question of ethics, I feel like it would be more wrong not to be open. If it doesn’t interest you, or offends you in any way, you can skip right on by. My writing will still be here if you ever find yourself in my position in future.

Why I Believe Fertility Support for Women With Diabetes Needs a Rethink

Like a lot of women with diabetes, I spend a lot of time ensuring that people see that it doesn’t have to interfere with life and that there aren’t very many things that I can’t do. We don’t want or need special treatment in most ordinary circumstances in life. That said, it certainly complicates life at times, and many things need a little more thought and planning. Pregnancy is an obvious example. Women with diabetes can, and frequently do, have happy healthy pregnancies with happy healthy babies at the end. But it does take a lot more planning and effort to achieve than for many women without diabetes.

Pregnancy prep, for a diabetic, begins many months before “trying to conceive”. Current available evidence suggests that the risk complications is reduced if blood glucose control is at optimal pregnancy levels for some months prior to conception. Most experts seem to recommend a minimum of three months of good control. And this has benefits for the mother-to-be too, as very rapidly tightening control after learning about an (unplanned) pregnancy is associated with a greater risk of worsening any pre-existing eye complications, or bringing new ones on, as well as a much greater risk of hypoglycaemic unawareness and severe low blood sugars – potentially dangerous for both mum and baby.

Pregnancy standard of control achieved for the requisite time, you get the green light to start “trying” in the normal way in the hope that a positive pregnancy test will soon follow. Except, obviously, sometimes it doesn’t. In the presence of good control and regular cycles, there is nothing to suggest that this might be related to diabetes. But all the while that tight control needs to be maintained.

Unless you live with it, it’s impossible to truly understand what that means, but here is a small flavour: Testing blood sugars frequently (up to ten times per day) day-in, day-out. Counting every carb that passes your lips and calculating the corresponding insulin dose. Restricting dietary choices in pursuits of better post-meal blood glucose levels. Aggressively correcting high blood sugars whilst trying to avoid too many lows. Dealing as best as possible with the hormonal ups and downs of each cycle and their effects on your carefully calculated control. And doing that over and over as each month your period arrives and your pregnancy hopes fade.

Vibe CGM Graph

Trying to conceive can be trying for everyone, but trying to conceive with diabetes is a double whammy of struggle.

If you’re under 35, like other women in the UK, women with diabetes are expected to endure 12 months of this roller coaster of trying and waiting until basic fertility investigations are carried out on the NHS. By this stage the obsession over blood sugars has already been going for at least 15 solid months. You then spend month 13 of “trying to conceive” getting blood tests done on appropriate days. And possibly month 14 having these repeated in the hope of a different result. Then you might wait anything between six and eighteen weeks to be seen by a fertility specialist (unless you opt to pay privately, of course). All of which adds up to over 18 months of super tight diabetes control. Two pregnancies worth, before you’re even pregnant.

It’s easy for outsiders to dismiss, to tell you to take a break and that it won’t hurt. Even my GP suggested to me that I stop trying quite so hard to keep my control so good, and if I did happen to fall pregnant I could quickly “sort things out” then. It’s easy to say if you won’t be the one unable to move on should that pregnancy end in miscarriage, forever wondering if those weeks of slacking were the cause. It’s also easy to say when you don’t understand that “sorting it out” isn’t always as easy as it sounds. Because where blood sugars are concerned, stability breeds stability and chaos breeds, well, chaos. Keeping on the level is hard work, but comparatively easier than creating good control out of a mess.

I’m well aware, as someone who wants to minimise the impact of diabetes on my life and health, that we should all be striving for tight control for our own sakes, not just our unborn children. But there is a difference in the level of control required long term to reduce the risks of complications and the extra level required to really minimise the risks to a growing baby. The difference is that just two weeks of terrible control in a forty week pregnancy is a relatively long term. Two weeks in the three decades of diabetes behind me and the many, many years still stretching ahead of me is comparatively tiny. I can slip up for a few weeks, slack off and only test a few times each day. I can take a break between CGM sensors if I so choose and I can be lazy and let my pump infusion site run on for four days because I don’t feel like changing it. In the grand scheme of things it won’t make much difference, unless you throw a potential pregnancy in to the mix. A baby is the biggest motivation for good control ever. But it’s also the biggest fear factor.

I can’t say it often enough that people with diabetes on the whole don’t want to be treated any differently than those without. For the most part there is no need. But sometimes it’s essential. Our pregnancies aren’t managed in the same way as pregnancies which aren’t complicated by diabetes, and I don’t believe that the assessment of our fertility should be either.

I wouldn’t for a moment suggest that women with diabetes should somehow jump the queue for fertility treatment and I fully understand and support the general need to wait a while before testing fertility, as most often all that is required is time. But for some people all that time will turn out to be a waste, because pregnancy could never have been achieved without some form of intervention. That is sad, and hard enough to bear for any couple. But for a woman with diabetes who has driven herself to burnout in all the months of obsessive control, it’s even harder.

The basic fertility tests offered to women who’ve been trying for a year are relatively inexpensive in health service terms and I believe that they should be offered sooner to women in this position. Even if it’s just reassurance that all the effort is worth while because there is nothing obvious going on and pregnancy is as likely as for every other couple. If the news is less good, then at least it’s possible to make informed decisions about diabetes management moving forwards. Because what is the comparative cost to the health service of managing pregnancies in women who have tired of all the hard of work of diabetes and burned out long before the successful conclusion of a pregnancy? These women are at increased risk of miscarriage, need even closer monitoring in pregnancy, have increased risk of needing a caesarean delivery, and increased risk of birth defects or still birth.

Obviously this is something about which I’m very biased, impatient as I am to have another child and as burned out as I am by controlling diabetes right now. I know that every women who is trying and failing to conceive is desperate for answers and wants them as soon as possible. What I’m trying to illustrate is how dealing with an all-consuming chronic medical condition makes this process harder. I’m constantly baffled by how we are left to struggle yet the moment the second line appears on a pregnancy test, there couldn’t be more help on offer.

I could certainly have done with a bit more support on this journey. It’s amazing how much better I’m beginning to feel now that we’re finally getting it.

No Laughing Matter

GBBOlogoThe quirky, humorous snippets and the innuendo from Sue Perkins and Mel Giedroyc is one of the many things that makes The Great British Bake Off so watchable. But when Perkins opened yesterday’s episode with the statement:

“So far we’ve… eaten a chocolate shard that’s made me insulin dependent”

I know, from the reactions on Twitter, that I wasn’t the only one addressing my television screen with at least a bemused “Erm… no it hasn’t” or, more likely, something rather stronger.

It’s light entertainment. I get that. She’s a successful comedienne. I get that too. I know it is not the place of a Tuesday evening reality television show about baking to educate the public about an, albeit common, chronic condition. But, unfortunately, that is exactly what it does.

People who aren’t already connected to diabetes, by living with it or caring for someone who lives with it, don’t tend to seek out accurate information about it from proper medical sources.Why should they, when it doesn’t affect them? They often believe that people with diabetes can’t eat any sugar. They often believe that only older people, or overweight people, are affected by diabetes. They believe what they see and hear in popular media. And a statement such as that opener inadvertently educates, or reinforces the belief, that diabetes is caused by eating too much sugar.

Let me state it for the record now: Type 1 Diabetes (formerly known as insulin-dependent diabetes) is an autoimmune disorder that is not caused in any way by one’s eating habits. In fact, the causes are so complex that not even dedicated research teams fully understand them all. But the bottom line is that the immune system destroys the healthy insulin-secreting cells in the pancreas so that insulin can no longer be made.

The irony is that all of us, diabetic or not and whether we have consumed an enormous chocolate cake or not, are dependent upon insulin. Our bodies need it to function. For people with type 1 diabetes, injected or infused insulin is an essential life support. Without it, we would die. Not as quickly as someone would die without oxygen or water, but rapidly and painfully nonetheless. That stark fact, which we face each day as we calculate and administer this life saving medication, makes it hard to swallow blithe jokes about becoming insulin dependent.

Diabetes is hard work. Browse through my archives to see exactly how much hard work it took to come safely through my pregnancy with a healthy child. Even without pregnancy in the mix, it’s a demanding part of every day. Every morsel of food, every moment of activity, every minute of stress and every degree change in the temperature has the capacity to affect blood sugar levels. The short term risk is severe low blood sugars, potentially leading to unconsciousness or seizures. The long term risks are to our eyes, our circulatory systems, our kidneys and our nervous systems – a seemingly endless list of potential complications of diabetes hangs over each and every one of us living with this condition.

And it’s a condition that’s full of blame. There is no other chronic condition where so much responsibility for ongoing health rests entirely with the patient; where so many day-to-day decisions about management are to be made by the patient alone. We blame ourselves enough when things don’t go to plan, and we don’t need external questions about whether we should be eating something or doing something or the suggestion that we brought this on ourselves with inappropriate dietary choices.

People with diabetes lead full, normal, rewarding and happy lives. There isn’t very much that we can’t do, and perhaps that is why the public perception of this condition remains so twisted. Rest assured that behind the scenes of a diabetic’s life there is a lot of hard work and effort involved in staying healthy. It’s not a laughing matter any more than cancer or mental health or any other illness.

So please, cut the blame and cut the jokes.

Monitor Me – Because I Need the Information

Watching Horizon – Monitor Me on BBC2 last night made me think about healthcare technology and apps in a slightly different light. Living with chronic illness since well before the advent of the world wide web, never mind smartphones and apps, the idea of self-monitoring health information isn’t at all new to me. I’ve been testing my blood glucose at home for three decades, albeit with meters which have got progressively smaller, faster and better featured. But because I think about my health every day, and collect certain information to help me maintain it, in the context of a pre-existing pathophysiology, the idea of using equipment to monitor what I regard as normal physiology hasn’t really occurred to me.

And to be honest, my overarching reaction is that this could well be overkill for most people, and simply a way to fuel unnecessary health anxieties – an increase the burdens on our health service – without improving any important health outcomes, especially as the use of so much home technology does nothing to address the long standing inequalities in health across the population. Those most in need of improved health outcomes are exactly those who often don’t have access to these sorts of technologies, nor the means to interpret the data they give. The program also did not look at how sustainable the changes they showed occurring in the short term really were, and how these might relate to more traditional models of health education. Clearly there is much quantitative research still be conducted before doctors will be prescribing direct from the App Store.

The part of the program which, inevitably, interested me the most though, was that which covered some novel new methods of monitoring actual health problems, rather than monitoring the healthy state. I was already half way through an eye roll, however, when they begun to trundle out a continuous glucose monitoring system, as I got the impression that they were treating it like a brand new technology – when in fact I’ve now been doing this for over seven years. That was quickly replaced with excitement though when I saw the neat integration in a mobile phone and the name DexCom at the bottom of that screen. I’ve been using a DexCom product (as a standalone unit, and then integrated in to my current insulin pump) for the last three years, and it’s a product that simply works. The idea of it working with my mobile phone is a very attractive one, although I’ve not had the chance to find out if this is actually a possibility in the pipeline for commercialisation.

Something became apparent to me, however, whilst following the social media conversations around the program. People seem to think that continuous glucose monitoring is all sorts of things that it’s not. They think it’s been around for years longer than it has (I was an early adopter – first real-time, at home systems came to market in 2005) or that it doesn’t yet exist outside of research programmes at all. They also seem to think that it is cheaper than traditional monitoring because it does away with the need to use so many expensive test strips. Unfortunately the technology isn’t cheap – sensors that are licensed for seven days currently run at around £50 each. The transmitters that last a year or so a several hundred pounds and the receiver in to four figures. Add to that the fact that you still need to use traditional finger stick monitoring to calibrate and before making dose decisions, and you can see the costs mount up. Convincing the NHS that this is cost effective is a long, hard road.

But most of all, people think it’s a gimmick. A game. An exciting gadget. They don’t seem able to comprehend the ongoing impact of actually “needing” to use this technology and relying on these results to stay as healthy as possible. They don’t think about the fact that you can’t necessarily pick and chose when to wear and use these devices, just as you can’t pick and choose when to have diabetes

When you have a chronic illness, monitoring your health is not something you do for fun or interest. You don’t do it in case you can spot early signs of a health problem. You do it because you have to in order to stay healthy. It’s a necessity more than a choice. Or rather, if you choose not to, the consequences can be enormous. If you choose not to run a sleep cycle app one night, chances are you will sleep fine. If you’re health conscious enough to use a pedometer, chances are you’ll take plenty of steps even on the days you don’t wear it. If, as a type 1 diabetic, you choose not to monitor your blood sugars, you could be taking a one way ride straight to hospital.

I don’t really expect people who don’t live in this bubble of chronic illness to get this, or to understand what relying on technology for your health really means, but I suppose that is at least part of the reason why I’m writing this now. I like a gadget as much as the next person. I’d be lost these days without a smartphone and I’m appreciative of the problems it’s solved and simplifications it’s made in my life. But I’m anxious not to see non-existent problems being addressed simply because we have the technology, and especially not to the detriment of people with true health needs.

Animas Vibe Dexcom G4 graph

Diabetes: Caught Between the Miracle Cure and the Deadly Scare

It often seems that there are only really two types of media story about diabetes. The first is the “New Hope on the Horizon” or “End to Jabs Misery for Diabetics” or even “Diabetes Cured… in Mice!” story. Damn those mice. They’re always getting cured. These stories are frustrating because we’ve been hearing it, covering the same ground and getting nowhere, for most of my diabetic life – which is now over thirty years. And it’s not as simple as not believing that there will be major changes in what we know and can do about diabetes, but these stories make it sound imminent and for those of us living with it, the reality is that on a day-to-day basis it still feels impossibly far away.

The second type of diabetes story that clogs up the health pages centres on the condition as a ticking time bomb. How diabetes rates are soaring and how much of a burden we are placing on the Health Service. How we are at risk of so many health complications, whose rates are also soaring, and that diabetes remains a leading cause of premature death.

There is very little middle ground in the mainstream media. What people outside the diabetes community see of the condition is either overwhelmingly positive (we’ll all be cured next year) or overwhelmingly negative (we’ll all be dead next year). Those of us living with type 1 diabetes are, however, for the most part caught somewhere quietly in between these two extremes, striving to live full, happy and healthy lives. And these kinds of media stories do nothing but undermine our efforts to that end.

Despite what the media may have you think, we’re simply not close enough to a cure to pin hopes on it happening. Every hour that we spend with sub-optimal blood glucose levels threatens our bodies and long term health. We can’t rely on a cure or new treatment to appear to halt that damage, so it’s imperative that we live each day as if the cure is never coming, in order to remain healthy enough to see it if it does. And funnily enough, cure aside, most of us don’t want to end up statistics of the condition anyway. We want to remain complication free and achieve a normal or near-normal life expectancy even if it never arrives.

So we work hard, extremely hard, to minimise and mitigate the risks as much as possible. I’ve said it before, but it always bears repeating, that diabetes is not a simple condition for which you take a set amount of medication each day and then forget about it. Every moment of every day has the capacity to affect blood glucose levels – food, activity, stress, illness, hormones, the weather… The list goes on. And the endlessly unpredictable human body can react to the exact same scenario in two different ways on two different days. It’s a constant juggling and balancing act that we ignore at our peril.
However, the negative side of diabetes in the media is a cause of a surprising amount of judgement and misunderstanding about what we can do and achieve. And the truth is, provided we are putting that effort in to controlling it as best we can, there isn’t much we can’t do. We can work in professional and challenging jobs. We can play sports at high level. We can travel around the world on our own. And we can certainly have healthy babies (I‘m proof of that!) And most importantly, we are able to contribute, not merely be a burden. But sometimes we’re under pressure to make diabetes look like it’s easy in order to suppress the idea that we shouldn’t be doing the things we want to, or to reduce other people’s concerns about us doing them. So we get on with all the mundanity of blood glucose testing, insulin dose adjusting and carb counting quietly and try to conceal our frustrations and struggles. Success at making it look easy is sweet, but it doesn’t help people outside the diabetes world understand what it’s really like.

Here’s the bottom line: Diabetes is hard work. And it’s relentless. It’s not our fault that we have this complex autoimmune condition – we certainly didn’t bring it on ourselves. And no matter how hard we try, and how well we do, high and low blood sugars are a fact of life. Diabetes is a big deal and it’s not disappearing any time soon. But it doesn’t mean that we can’t live full, normal lives, provided we are properly supported.

This week is Diabetes UK’s Diabetes Week, focusing on raising awareness. I don’t think we only need to raise awareness of the fact that diabetes exists, but also of the actual realities of living with condition every day.