Making Peace with Diabetes | My TAD Talk 2019

On Saturday 30th March, I was lucky to be one of six speakers at the 4th annual ‘Talking About Diabetes’ (TAD) event at the Royal College of Physicians in London. It was an absolute honour to be able to speak amongst such inspirational people, as well as to catch up with old friends and meet others for the first time. Jade, Lauren, Sam, Muhammad, James – you’re all incredible. A huge thank you also to those who organised the day and made it all possible, it was such a fantastic experience.

The outpouring of supportive feedback and messages I’ve received since my talk has been overwhelming. Until the videos of the talks are released, I thought I would share my story here – many will already know parts of it, but I spoke about my experiences growing up with Type 1 diabetes, (recovering from) eating disorders and the lessons I learnt along the way. 

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I was diagnosed with Type 1 diabetes at 2 years old, coeliac disease at 4 and hypothyroidism when I was 10.

As you can probably guess from the title of this post, I haven’t always had the best relationship with my diabetes, and if I could, I definitely would have divorced it by now – but my story does have a happy ending, so please bear with me. 

As a child, I never really felt as though having diabetes held me back – I was lucky to have parents who always let me believe that I could do anything I wanted to pursue my dreams. My mum especially, who was diagnosed with Type 1 diabetes and coeliac disease 5 years to the day after me, is amazing, and carried a lot of the stress of diabetes throughout my childhood.

Growing up with diabetes came with its fair share of frustrations, beyond just the injections and glucose tests – especially the lack of flexibility around mealtimes until I moved from mixed insulin to a basal bolus regime at 10 years old.

I learnt to deal with the strange looks from people when I’d inject in public and the fact that I had to go to the nurses’ office every time I needed to take my insulin at school – only to find that it was locked half of the time.

But then there would be the ignorant and hurtful comments from people at school, including from a teacher in the middle of a whole-school assembly, about how people only get diabetes if they eat too much sugar and don’t exercise enough. All of us know that’s not true, but when you’re 10 years old and just want to play with your friends, it gets frustrating having to keep try and explain.

There were definitely some funnier moments along the way too – like the way I used to inject my favourite teddy every time I had to inject myself, or the way I would make up all of my glucose readings the night before my clinic appointments, making sure to use different coloured pens just to make them more believable. Sadly, I didn’t make the levels themselves as realistic, so would always get found out!

That being said, I took it all in my stride. I did swimming lessons, multiple dance lessons, performing arts, was a straight-A student and had good friends. I was confident, outgoing, and most importantly, I was happy.

Then I became a teenager!

We are constantly told that living with diabetes doesn’t have to hold us back – whilst this might be inspirational and uplifting to hear, and true to some extent, the reality is that for some people living with diabetes, it simply isn’t the case.

Whether it’s a lack of access to affordable insulin, living with the anxiety of complications, or additional physical and/or mental health conditions thrown into the mix, some people do feel held back by their diabetes in some way, and to say otherwise does them a complete disservice.

Most of us probably know by now that 1 in 4 people will experience mental illness at some point in their lives – for those of us also living with a chronic illness like diabetes, the odds are slashed to 1 in 3. When talking about eating disorders and diabetes, the odds are higher yet still, with up to 41% of us likely to experience some form of eating disorder.

When the very nature of diabetes requires an obsessive relationship with both food and numbers, and we rely upon the use of a highly effective weight management tool every single day just to stay alive, it’s easy to understand why.

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The media portrayal of diabetes does nothing to help – when the US Surgeon General tweets something like that, what hope do we have for the rest of the world?!

I was 12 years old when I joined the 41%. I would alternate between periods of skipping lunch and then binging in secret in the afternoons after school. My parents had just divorced, I was in my first year of secondary school and had started dancing a lot more – I became fixated on how I looked, and it was easy for me to turn to food.

By the time I was 13, it had developed into what I now know to be diabulimia, where I would manipulate my insulin doses to control my weight.

It started off as small amounts, but quickly became entire doses that I was skipping over extended periods of time. I lied to my mum and tried my best to hide everything from her. However, mums find out everything – and mine was no exception!

Two days before my 14th birthday, I was rushed into resus in severe DKA, with brain swelling and my doctors concerned that I wouldn’t make it through the night. Thankfully, I did, but that night was the start of a lengthy battle for me.

The next morning, I met my new paediatric consultant for the first time – we spent the next 2 hours talking about how I wasn’t testing my glucose levels enough, but nothing more was said after that.

The problem I had was that, 10 years ago, there was very little available in the form of awareness or support for diabulimia, particularly for children and adolescents. I was referred to Child and Adolescent Mental Health Services (CAMHS) shortly after my DKA admission.

After just one appointment with CAMHS, my psychologist went on maternity leave, and I was told that my case was too complicated to continue being seen. With there being little that my paediatric diabetes team could offer me in the form of support for my eating disorder, it felt as though I was completely alone.

Over the next 4 years, my eating disorder got worse – a lot worse. I knew I could no longer get away with omitting entire doses of insulin if I was to avoid another DKA admission and inevitably being found out, but I still manipulated my doses.

When I was 14 and a half, I also began heavily restricting both the amount and the types of foods that I was eating, and quickly lost a lot of weight. I received compliments from people at school on how I looked, I felt more confident in dance lessons, and it gave me a sense of control at a time when it felt like I was in control of nothing else.

This continued over the next 3 years – as did my lack of glucose testing and high HbA1cs – only with the addition of other eating disorder behaviours and an intense fear of hypos, as to me, these meant only having to consume more calories. By this point, I was studying for my A-Levels in college and still trying to maintain a straight-A record, but not really succeeding!

When I was 17, I approached my GP to see about getting specialised eating disorder help. I left with a box of anti-depressants, but no help for my eating disorder.

A few months later, I made myself sick for the first time. This continued, and worsened, and shortly after I made another appointment with my GP – only this time, I was referred to an independent dietitian. The dietitian immediately referred me to a specialist eating disorder clinic for adults, and I finally felt as though I was getting somewhere.

Shortly after my 18th birthday, I attended my first appointment at the clinic – now with full-blown bulimia and in my final year of college. That day was my very first step on the road to recovery. But what I quickly discovered is that the road to recovery is not a straight one!

I attended weekly sessions at the clinic for the next 6 months, and over the same time period, left college with 3 As in my final exams, got my first job, met my now fiancé and moved to my adult diabetes clinic.

What struck me most in my early days of recovery is just how much more complicated it is when diabetes – regardless of type – is added to the equation. One of the first things that my therapist told me that I needed to do was to stop counting calories and stop weighing out my food – when I told her that I would still need to count carbohydrates with every meal and weigh out certain foods, she didn’t know what to say.

I made it seem as though I was making great progress with my recovery, but in reality, I was lying to my therapist (and everyone else) about relapses, because I wasn’t prepared to let go of my eating disorder. I eventually discharged myself, and as every 18-year-old in their right mind does, decided that I didn’t need their help. This of course, was a lie!

Over the next 2 years, I continued the cycle of asking to be re-referred to the eating disorder clinic and later discharging myself another 4 times. From a diabetes point of view, I was extremely burnt out, didn’t attend my appointments and had zero interest in taking care of myself.

My eating disorder provided a great distraction from the incessant daily demands of living with Type 1 diabetes, because when you’re stuck in an endless pit of self-loathing, the last thing on your mind is what your glucose levels are doing.

After reaching rock bottom (and then discovering that it had a basement), I eventually decided that I’d had enough; I was tired of the exhaustion, blood tests and ECGs; tired of my hair falling out in handfuls every day and tired of crying and watching myself destroy everything good in my life when there was so much to live for and so much more that I wanted to achieve.

I also knew that my partner and I wanted children one day and I wanted to do everything I could to ensure that would be possible. The way I was treating myself couldn’t have been further from the way that I would want my own children to treat themselves – so why should I be any different?

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So I started fighting back, challenging the voice in my head telling me that I wasn’t good enough and didn’t deserve happiness.

I decided that I would have to get serious about recovery, even if it meant gaining weight. The tools that I learned in therapy definitely helped me, but I got to use them on my terms and in my way.

As I progressed in recovery, I also felt more able to start taking better care of my diabetes – only, because I’d spent so long not doing so, it felt as though I’d been diagnosed all over again, despite having lived with it for nearly 20 years by this point. I was overwhelmed.

I started attending all of my clinic appointments – I was asked how I was doing, not just how my levels were doing, and was set goals that were achievable for me in my situation.

I had a brilliant paediatric team, but they just couldn’t offer me what I’d needed at that time.

Simple things made the world of difference to me, like being able to email my consultant rather than having to explain everything out loud, or not having to be weighed at my appointments – something which, to this day, I still continue, because it’s just one less thing to worry about each time. Getting the sense that progress was better than perfection ultimately motivated me more than any telling-off ever could.

In the summer of 2016, I started a job in my dream industry – my current job – which only added further fuel to my recovery fire. A month later, I completed my first year of university with a Distinction and 90% overall. 6 months later, my now fiancé proposed to me. 1 month after that, we moved into our own home. Another 6 months later, I completed my apprenticeship course with a Distinction and 2 months after that, my employers offered to sponsor me for the remainder of my degree.

Along the way, I joined Twitter and stumbled across the diabetes online community in the summer of 2017. It was so amazing to be able to talk to other people who had similar experiences to mine, and made me realise the true power of peer support.

In November 2017, I started my blog as a way of talking about my experiences with mental health and Type 1 diabetes. I never in my wildest dreams could have imagined that, 16 months later, I’d have blog views from 43 countries across every continent except Antarctica, be talking to 300 people, joining a steering group to help influence mental health support for diabetes at a national level, and accepting an invitation to the House of Commons!

I’m currently working towards a promotion to land my dream job as a Coastal Engineer, I finish university later this year, and next year I get to call my incredible fiancé my husband.

Not a single one of these things would have been possible if I hadn’t chosen recovery and continued making that choice every single day.

What I lost with my eating disorder was far more than weight – I lost friends, stopped dancing, dropped grades and didn’t apply to the universities that I’d always wanted to. I lost all of my happiness and confidence, was anxious, depressed, self-harmed and couldn’t see a way out of the darkness. I became a complete shell of the person I once was, both physically and mentally. It consumed every minute of every day, and ultimately the thing that made me feel in control made me lose control of everything.

Recovery is by far the hardest thing I have ever had to do – but it’s not only given me my life back, it’s given me a life far better than the one I would have had otherwise; because I’m so much stronger, more compassionate, more resilient and more determined now than I ever would have been before.

I can now happily say, that my Type 1 diabetes used to hold me back – but it doesn’t anymore.

I had to learn the hard way that recovery won’t work unless you believe you deserve it – you can have the biggest support team in the world, but until you believe in your own self-worth, it won’t happen.

I’m not ashamed of my past and I’m not afraid to talk about mental health, because eating disorders, and in fact most mental illnesses, thrive on secrecy and they happen regardless of whether we’re prepared to have difficult conversations about them or not.

These days, I embrace my imperfections, and can often be found tweeting about my Bridget Jones worthy moments – though, not Bridget Jones’ Baby, if anyone’s seen that film!

I’m not perfect – I’m a work in progress and probably always will be. My body isn’t perfect and my diabetes management isn’t perfect – but in the illusion of perfection plastered all over social media, I know that who I am is enough.

I hope that if there’s one thing you take away from this post, it’s that all of you are too.

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From cramponing across a glacier, caving through the lava tube of an extinct volcano, swimming under waterfalls and kayaking alongside seals in the Pacific Ocean, to abseiling 170 metres down the side of a building and quad biking through the Atlas Mountains; there is a crazy, messy, beautiful life out there – but you can’t live a full life on an empty stomach.

Amy

xx

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